Hello everyone! I hope you are all pain free and doing good.
The title of this post says it all about the last few days. I am still sick with the flu. Fevers, chills, dry cough, runny nose, headaches and blah. Please do be extra vigilant to keep from getting this flu!! It is a misery and since those of us with autoimmune diseases are usually on immunosuppressants of some sort, hyper vigilance is called for. I thought I was being vigilant yet here I sit, three weeks into it and no relief in sight.
So I have been a bit grumpy, to say the least. I have several reasons. First, I am sick. No explanation needed there. Second, I have been sick for three weeks now. That will make you grumpy too. Third, after waiting over a week to see the PA at my GP’s office, I was not looked at for the flu, but instead they went by what I made the appointment for ONLY. That was acid reflux. Yep, I sat at the doctors and was told I would only be seen for what I had made the appt. for, nothing more. If I needed to be seen for the flu, I needed to make another appt. Same thing for my foot. Ok, the foot I can understand but the flu??? Oh, and since two immediate family members recently had cancer in the uterus and ovaries, I actually asked for an order to get ct scan done just to be safe. I mean, she was writing an order for a chest X-ray so why not? I told her why I wanted it. I was told that would be a entirely new appt and she would not write those orders for me! So, if I needed all these things looked into, then three more appts. would be needed. Seriously!!!
Now having worked in the medical field (nursing), I was flabbergasted!! I understand not addressing my foot issue, but to tell me no orders would be written for tests that I could get done at the same trip to the hospital was absolutely beyond my comprehension. Click, click print and done. Nope. When I said how much easier it would be to do them all at the same trip I was told ” people have to get them done at different times all the time”. Not exactly those words but actually ruder.
So, I have been toying with the idea of changing my doctor (gp) for a bit lately and today tipped the scale. I waited to see them even though I was sick, and have lupus, and yet I could not be treated for anything other than acid reflux!!!!
See ya family practice I have gone to for some thirty years!!! I will find one that actually treats their patients with compassion and caring!!! I have had enough!!!
First, I am on a VERY fixed income. Second, the hospital is in Dayton Ohio so I ration my gas and would like to make it all in one day. Third, I am a human being that typically will NOT go to the doctor UNLESS I am quite ill. You could even say slightly non compliant. If I make an appt. it is not a little thing to me. If I could afford all those visits in the first place, I would not wait until I have to be seen.
So, I got a handout about gerd, an order for a chest X-ray, and $83.00 poorer for wasting my time. This has upset me so much I came home and cried.
Now on to find a new doctor. My daughter told me of the one they see and I am thinking next month I can set up an appointment and see how it goes. I cannot afford another doctor appt this month. Sucks to be me right now but I will survive!
In the meantime, I can always go to the ER where they treat me with more respect and dignity then my family doctors “professionals”.
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01/03/2013 | Categories: Uncategorized | Tags: chest x ray, Health, hyper vigilance, Medicine | 2 Comments »
Well I am still alive and kicking here in Ohio. I must say though, this flu sucks. I have gone from vomiting and diarrhea onto fevers, chills, aches and coughing with sinus pressure. Yeah, it sucks to be me right now.
No matter that though. I want to ask that all my readers do me a favor please. Actually two. First, please pray for my friend Brian and his wife. They live in Tennessee. Their new baby developed an issue and while at the hospital, it was discovered there is a heart issue. The baby was airlifted to children’s hospital in cincinnati and is scheduled to have surgery. This sweet couple need all the help and prayers they can get! On Facebook, you can read their story at the page, “Lucas Strong”. Please keep this family in your prayers!
Second, I have another friend whose grandson has a rare form of cancer. He had a none marrow transplant and has declined steadily ever since. He is soon now to have no more pain but his family, including my friend who is his grandmother, are experiencing emotionally devastating pain as they let him go. Ironically both children are at cincinnati children’s hospital.
So I ask for prayers for these two families who are dealing with so many different issues right now. You don’t need their names, since I know God knows who they are. I thank you.
As I write this I am watching the snow plow clearing our road. We got seven inches of snow a few days ago and have received around three inches so far tonight. I think our mild winter last year is resulting in the snow of this year.
I will be seeing two doctors in the next week and a half. Hopefully I can get this flu over with and move forward again. I just have not been well and that’s why I have not been on here.
Stay safe and warm out there!! ~Jen
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12/29/2012 | Categories: Uncategorized | Tags: Health, Medicine, Mental health, nature, Weather, winter | 3 Comments »
This is a repeat of this post. I thought it maight be worthy of reading again.
Lingo or Medspeak
As someone who comes from a medical professional background (nursing), I had to learn how to medspeak, or the language of medicine with its roots of latin and long unpronounceable words in nursing school. Since my diagnosis, I have found this knowledge to be an asset to understanding what is going on and the variances of the disease. I have also found that many others have been forced to learn the lingo or medspeak upon their diagnosis as well.
When you are diagnosed with a chronic, incurable disease, the first thing many do is look it up online. This can be good or bad. There may be a lot of information out there, some good and some bad, some not important, some important. Some of the information will scare you to death if you read it. For example, when I was first diagnosed with lupus, one of the first things I read was that the life expectancy was ten years. I should point out that I passed the ten year mark about 9 years ago. Unfortunately, that information is still out there and some may stumble upon it and freak out.
With medical diagnoses and prognosis changing every day, it is no surprise that many people are confused by what they find. I think I would recommend if you are researching your diagnosis, start with the national organization in your country. Most times, they have the most current, accurate information available. Once you have waded through the goldmine of information you find there, give it time to digest and process in your mind.
Another great source is to join a support group in your area. You can find out if there are any by once again checking your national organization’s website or calling your local hospitals and asking. Many times, your doctor may even know of any support groups as well.
One of the best ways to investigate the medical lingo is to take it word for word. When you happen on a word you do not understand, stop and look that one word up individually and then try to make sense of it as a whole. Put it in perspective with the sentence. If there is a sticking point, write it down and ask your doctor. Better safe than sorry.
On the whole, always remember that unless it is from an “official” website, it may not be as accurate as it could be. Caution is to be exercised above all and always consult your physician as well.
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09/04/2011 | Categories: All things lupus, Autoimmune Diseases, Fibromyalgia, Life, Medications | Tags: Conditions and Diseases, Connective Tissue, Diagnosis, Health, information, Medicine, Musculoskeletal Disorders, Support group | 1 Comment »
Well, I guess it is time for me to add a personal post. Times are getting better, then worse. Each day has been a challenge in one way or another lately. I have not disclosed the reasons why to date but feel I need to do so now, if only to allow me to shake the negatives by putting them out there and dealing with them more fully.
I have been dealing with a series of tests from several doctors and the results are finally coming in. I had one test come back good. Yay me! However, two other tests came back with issues. As a result, I have had two more tests done to further review the initial results. I still have not heard from three other tests yet.
I still do not think I want to disclose the exact things that are being checked, as it could be a bunch of nothing to worry about. That being said, it is worrying just to have abnormal results and have to take more tests. I have been tied up in this drama of not knowing now for a few weeks and it can wear on the already sick body. It has done exactly that for me.
To illustrate, last night I was in bed and woke up to pain. Yes, the pain woke me up and forced me to sit up and try to get it to stop. I only had over the counter NSAIDS to take, and believe me, they did not help much. I found myself crying and in pain and wishing I could just go back to sleep.
I am going to see about being more proactive in my care again as this pain is crazy to endure when I should not have to. I could be a druggie ont he streets and get the relief I need but no, I am an honest person who cannot seem to get the pain relief I need. Oh well, you can read my tirade on that in the post from some time ago called “Police Mentality and Pain Control“.
I will share what is going on when I know more about it myself. Until then, I apologize for not posting and being a bit on the selfish side. I am just overwhelmed and hope these things get resolved sooner than later. Thanks for letting me spout off and get it out there! It really helps me to be able to vent on this blog and then feel better.
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05/13/2011 | Categories: All things lupus, Autoimmune Diseases, Life, Medications | Tags: Health, Medical Specialties, Medicine, Non-steroidal anti-inflammatory drug, pain, Pain management, Systemic lupus erythematosus | 2 Comments »
This post is yet another in the long lost of things that have gone wrong for me lately. I am telling this because I am wanting others who are “normal” to understand how a simple thing like a cold can become something even more menacing when you have an autoimmune disease.
It started out innocent enough, just a cold. I don’t know where I got it, but I got it and it wasn’t that bad, at first that is. My husband got it and so did my mother-in-law (who lives with us). This is where the similarities end.
I began to have a fever and chills, sore throat, body aches, ear aches, headaches, swollen lymph nodes in my neck and under my arms, a non-productive cough, tons of sneezing, my face began to look like a malar rash was coming in, and my face was swollen from the sinuses being so full, and a tightness in my chest. I could not eat, felt worse than I normally do, and was basically laying around.
This happened over the weekend so I did not call the doctor, but I tried home remedies that I have used over the years to help me muddle through it. I made honey and lemon tea (I wish I could have gotten some good whiskey but it was not happening), I kept hot or cold packs on my head and face (depending on whether I was hot or cold I used the opposite), I used my neti pot more frequently, I made sure to keep hydrated, and I used my nebulizer for the dry cough.
A couple of days into this and I felt better and thought the worst was over. WRONG! I had a brief reprieve for a day then back into the abyss again. This was on Monday so I broke down and called my rheumy. He ordered me prednisone to help me get on track quicker and prevent the flare I am in from getting worse and to keep me from pleurisy (which I can get easily with these things happening). I then talked to my family doc who ordered me some antibiotics.
It has been two days since them and I think the corner is getting turned. I got out into the cold and snow to go to the store with my hubs. It was hard to do since I am still hurting, but I did it. I am not patting myself on the back, just stating a fact.
On to the next thing… can you believe that there are people out there who actually think I was being a BABY about a mere cold??? That is why I posted the posts about lupus and the flu in an attempt to educate so others will not open their mouths and insert their feet. I mean, come on, if I can live in pain for most days, why should I gripe about a mere cold? If it is overriding the pain I normally feel, then listen up! I am in PAIN and I AM SICK! My lungs get weak quick ( I have asthma) when I get these bugs and it is not something I can buck up and get over!
It really burns me that there are people out there who think I am being a baby. I say, if you have not walked in my shoes, then tread lightly and do not impose your limited medical knowledge on me. Believe me, if I could, I would “get over it”. I would love to walk in your shoes and have the energy to get all I want done. I would love to be able to have a mere cold and not be any sicker. I would love to not lay in a recliner or bed on the days when I am the most sick. I would love to work again!
The truth is that I cannot do a lot of these things anymore and if you need to put me down with your snide remarks and innuendo to make yourself feel better about yourself, then take a long walk off a short pier please and leave me alone. I cherish the real friends I have around me and I do not need anyone who has to be mean to others to elevate their own stature (at least in their mind). It is petty, small minded and just plain ugly to treat others with so much disdain that you belittle their illness and them and then can go off and laugh later thinking you were so clever.
I hate to break it to you but the truth is, you really make a fool of yourself because others can see through you and actually feel pity for you, because you cannot or will not ever understand the feeling of empathy. I feel sorry for you too.
In the meantime, I will deal with each bump along the way and I am so thankful that I am here for today! Little things are big things to me! I am blessed int hat I have dear friends who genuinely love me,and I do not need the pettiness.
I think when I am sick these things hurt me more than when I am feeling better. I apologize for the negativity. Sometimes, I just have to get it out or I will explode.
I hope everyone is safe and warm and dry out there! Thanks for letting me vent!
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02/02/2011 | Categories: All things lupus, Autoimmune Diseases, Family, Life, Medications | Tags: Common cold, Conditions and Diseases, Cough, flu, Health, lupus, Medicine, Neti pot, pain, Symptom | 2 Comments »
I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!
See, I told you…good news indeed! I am finally feeling wonderfully like me!
The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?
For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.
I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.
I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.
When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?
You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?
When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.
Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.
I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are!
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12/17/2010 | Categories: All things lupus, Autoimmune Diseases, Family, Life, Medications | Tags: chronic pain, Clinics and Practices, Health, Massage, Medical Specialties, Medicine, pain, Pain management, Systemic lupus erythematosus | Comments Off
I must confess that I have thoroughly enjoyed our Indian Summer this year. Now that it is December, the cold arctic air has arrived and snow along with it. The beautiful white fluffy flakes have been falling off and on for two days now. The roads have not been bad, considering it is the first snowfall of the season.
I ventured out yesterday to pick up a few groceries. Most normal people do not think twice about getting ready and heading out, even in bad weather. I got dressed and put my coat on and headed out. I got to the grocery and while I was shopping, I began to experience pain in my legs, specifically in my knees, ankles and feet. After checking out quickly, I headed back home.
I arrived home and immediately took my pain medication (the one that really does not much). I was a total grouch too. I seem to be a grouch when I am in pain. At least, that is what my family tells me. I recognize it as well. After what seemed like a long time, the pain began to subside somewhat.
I posting this because it shows how I can feel decent one moment and in a short time, feel intense pain in my joints. The pain was triggered in part by the cold air I had been in. I have found when it gets cold, my body rebels and causes pain to occur.
My story is not unique. Most of us lupies experience more pain and flares in the winter, and it seems that the colder weather does trigger the flares and pain. This is the time of the year I call my hibernation period. I call it that because I do not get out much, and actually go out of my way NOT to go out. It is the only way I can feel like I can control my pain.
On the plus side, this last week I had my yearly eye exam and it went well. I have a new rx for glasses so I have to get them soon. The cataracts are still growing, but they are not as invasive as they could have been. Whew! Unless they get worse, I do not have to go back for one year! I go once a year because of the medication I am on, called plaquenil. It is an anti malarial drug which can affect the eyes when used long term. I have been on this medication for ten years or more now. To prevent the possible side effects, I have to go once a year and do several tests just to make sure all is well.
Next appointment is with the pain clinic for my first visit and then I also have an appointment to see the orthopedic surgeon about my knees. Finally, I will see my surgeon that takes care of my stomach. This month is the month of doctors. The good news is that once it is over, I should be cleared again for a few months at least.
When you have a chronic disease like lupus, you develop a “team” of doctors who take care of various aspects of the manifestations of the disease. I personally see my family doctor, a neurologist, a rheumatologist, a surgeon, an orthopedic surgeon, and my opthalmalogist. On the periphery are my other doctors, which I see as needed. One is my cardiologist and another is the gastroenterologist.
Well, in the meantime, I will update as I go through all of these. I am hoping to have more survivor stories soon from some of my friends. It is my hope that even if it helps and encourages one person, it will be worth it!
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12/06/2010 | Categories: All things lupus, Autoimmune Diseases, Family, Life | Tags: chronic, Health, Medicine, Orthopedic surgery, Osteomyelitis, pain, Pain management, Surgery | Comments Off
This post is not about the group Foreigner or their hit song of the same name. This double vision thing just started and to be honest, it is kinda scary. Both eyes have it. So, I looked it up and here is the information I found. This information is from www.webmd.com.
One of the things that can cause it is migraines, something I get quite frequently lately. Interestingly, myasthenia gravis is another cause and it is one of those possible overlapping diseases that occur in some people who have autoimmune diseases. Interesting to read. Enjoy!
Double vision, or diplopia, is a symptom to take seriously. Some causes of diplopia are relatively minor, but others need urgent medical attention. WebMD takes a look at the causes, symptoms, and treatments for double vision.
What Causes Double Vision?
Opening your eyes and seeing a single, clear image is something you probably take for granted. But that seemingly automatic process depends on the orchestration of multiple areas of the vision system. They all need to work together seamlessly:
- The cornea is the clear window into the eye. It does most of the focusing of incoming light.
- The lens is behind the pupil. It also helps focus light onto the retina.
- Muscles of the eye — extraocular muscles — rotate the eye.
- Nerves carry visual information from the eyes to the brain.
- The brain is where several areas process visual information from the eyes.
Problems with any part of the vision system can lead to double vision. It makes sense to consider the causes of diplopia according to the part of the visual system that has the problem. Double vision is not normal and should be reported promptly.
Cornea problems. Problems with the cornea often cause double vision in one eye only. Covering the affected eye makes the double vision go away. The damaged surface of the eye distorts incoming light, causing double vision. Damage can happen in several ways:
- Infections of the cornea, such as herpes zoster, or shingles, can distort the cornea.
- An uncommon complication of LASIK surgery can leave one cornea altered, creating unequal visual images.
Lens problems. Cataracts are the most common problem with the lens that causes double vision. If cataracts are present in both eyes, images from both eyes will be distorted. Cataracts are often correctable with minor surgery.
Muscle problems. If a muscle in one eye is weak, that eye can’t move smoothly with the healthy eye. Gazing in directions controlled by the weak muscle causes double vision. Muscle problems can result from several causes:
- Myasthenia gravis is an autoimmune illness that blocks the stimulation of muscles by nerves inside the head. The earliest signs are often double vision and drooping eyelids, or ptosis.
- Graves’ disease is a thyroid condition that weakens the muscles of the eyes. Graves’ disease commonly causes vertical diplopia. With vertical diplopia, one image is on top of the other.
Nerve problems. Several different conditions can damage the nerves and lead to double vision:
- Multiple sclerosis can affect nerves anywhere in the brain or spinal cord. If the nerves controlling the eyes are damaged, double vision can result.
- Guillain-Barre syndrome is a nerve condition that causes progressive weakness. Sometimes, the first symptoms occur in the eyes and cause double vision.
- Uncontrolled diabetes can lead to nerve damage in one of the eyes, causing eye weakness and double vision.
Brain problems. The nerves controlling the eyes connect directly to the brain. Further visual processing takes place inside the brain. Many different causes for double vision originate in the brain. They include:
- Strokes
- Aneurysms
- Increased pressure inside the brain from trauma, bleeding, or infection
- Brain tumors
- Migraine headaches
What Are the Symptoms of Double Vision?
Double vision can occur by itself with no other symptoms. Depending on the cause, other symptoms may be present with double vision, such as:
- Misalignment of one or both eyes (a “wandering eye” or “cross-eyed” appearance)
- Pain with eye movements in one or both eyes
- Pain around the eyes, such as in the temples or eyebrows
- Headache
- Nausea
- Weakness in the eyes or anywhere else
- Droopy eyelids
How Is Double Vision Diagnosed?
Double vision that’s new or unexplained needs medical attention right away. With so many potentially serious causes for double vision, it’s important to discover the reason without delay.
Your doctor will most likely use multiple methods to diagnose the cause for double vision. Blood tests, a physical exam, and possibly imaging studies like computed tomography (CT) or magnetic resonance imaging (MRI) are frequently used.
One of the most effective tools in diagnosing diplopia, though, is the information you can provide. You can make the diagnosis for double vision more accurate by answering several questions beforehand.
- When did the double vision start?
- Have you hit your head, fallen, or been unconscious?
- Were you in a car accident?
- Is the double vision worse at the end of the day or when you’re tired?
- Have you had any other symptoms besides double vision?
- Do you tend to tilt your head to one side? Look at old pictures, or ask family — you may not even be aware of the habit.
Now, focus on something unmoving in your field of vision — a window or a tree.
- Are the two objects side by side, or is one on top of the other? Or are they slightly diagonal? Which one is higher or lower?
- Are both images clear but simply unaligned with each other? Or is one image blurry and the other clear?
- Cover one eye, then uncover it and cover the other. Does covering either eye make the double vision go away?
- Pretend your field of vision is a clock face. Move your eyes around the clock, from noon to six and up to 12 again. Is your double vision worse at any clock position? Does any position make your double vision improve?
- Tilt your head to the right, then to the left. Do any of these positions improve the double vision, or make it worse?
How Is Double Vision Treated?
With double vision, the most important step is to identify and treat the underlying cause. In some cases, double vision can be improved by managing or correcting its cause.
- If weak eye muscles are the cause, or if a muscle has been pinched as a result of injury, surgery may help.
- Myasthenia gravis can be treated with medications.
- Graves’ disease is often curable with surgery or medical therapy.
- Blood sugar in diabetes can be controlled with medicines and/or insulin.
If double vision can’t be reversed, treatments can help people live with double vision. Sometimes, this requires wearing an eye patch or special contact lens to minimize the effect of double vision.
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11/13/2010 | Categories: All things lupus, Autoimmune Diseases, Life | Tags: Brain tumor, Conditions and Diseases, Cornea, Diplopia, Eye, Health, Medicine, migraine, myasthenia gravis, strokes | Comments Off
Once again, in researching some things about lupus, I found this interesting article discussing neurology and lupus. It is written by neurologists for neurologists but it is enlightening for patients as well. This information came fromt he website www.asktheneurologist.com.
“Lupus neurology:- Here we deal with all the neurological manifestations of lupus including epilepsy, headache,and psychiatric problems“
// //
Systemic Lupus Erythematosus (SLE or lupus for short) is disease of the immune system (autoimmune disease) affecting many different organ systems throughout the body.
Neurological and psychiatric symptoms occur in many patients due to the disease process itself however the issue is further complicated by the fact that drugs used in SLE and other “rheumatological” conditions may have a variety of neurological side effects. In addition neurological problems may result from damage to other organ systems such as the liver and kidneys.
Lupus Neurology:- Neurological features of SLE
SLE is characterized by the presence of circulating antibodies which attack the host (“autoantibodies”)
A wide variety of neurological symptoms may occur in patients previously diagnosed with SLE. However, patients ultimately diagnosed with SLE may initially present with neurological symptoms and have no obvious involvement of other organ systems on initial clinical evaluation. Therefore many patients originally going to a neurologist with neurological syndromes should be screened for clinical and laboratory features of SLE.
On the other hand, neurological evaluation of patients with established SLE may not be straightforward, as neurological problems may be a direct consequence of the disease, a result of other organ involvement or due to therapeutic interventions. The American College of Rheumatology defined 19 neuropsychiatric syndromes (NPS) occurring in SLE. These represent conditions directly associated with SLE and does not include conditions occurring because of other organ involvement or therapy.
The antiphospholipid antibody syndrome (APLAS) is a frequent accompaniment to SLE and the frequency of nervous system involvement is higher in SLE patients with antiphospholipid antibodies, particularly anticardiolipin antibodies. Furthermore, neuropsychiatric syndromes frequently occur in APLAS without SLE
Various neurological problems may be interrelated. For example, cerebrovascular disease or stroke may lead to “focal deficits” such as weakness of one side, cognitive problems, seizures and a movement disorder . Similarly, inflammation of the spinal cord (“myelitis”) may either be isolated, or reflect the co-existence of Neuromyelitis optica or Devic disease, or multiple sclerosis (MS) both of which which are sometimes an issue in “lupus neurology”.
A severe syndrome of short term memory loss due to bilateral hippocampal inflammation known as “limbic encephalitis” may occasionally occur.
Although headache is often considered to be one of the neurological manifestations of SLE the association is controversial. Headache is probably no more frequent in SLE when compared to the general population, while migraine with aura may be commoner in SLE sufferers especially with anticardiolipin antibodies. In children with SLE, headache may be associated with CNS involvement and may lead to referral for an MRI.
To summarize:- neurological dysfunction is an important cause of disability in SLE and many neurological disorders will prompt a neurologist to exclude the presence of a co-existing rheumatic condition such as SLE.
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10/21/2010 | Categories: All things lupus, Life | Tags: disease, Health, Conditions and Diseases, Autoimmune disease, Systemic lupus erythematosus, American College of Rheumatology, Medicine, Neurology | Comments Off
Today was one of those days where you think about things in your life and how to change them for the better. It requires me to make decisions about a few things, but the one I will discuss here is my doctors. I adore my family practitioner very much. She is awesome and never makes you feel like you are stupid when you ask questions.
I am currently in process with my neurologist. In other words, he is still new to me but so far I have been impressed with his manner and decisions in my care. He is doing tests and making sure of the things and how to deal with them. I like that,
My rheumatologist is a nice man. He is also the doctor for my clinical trial I am on (benlysta, soon to be approved). I like him. There is one flaw in the equation though. He seems reluctant to help me in the pain department. So now I have to make a decision. I actually have had three different people tell me I need to go to a pain clinic. These people know me well and after discussing my issues with them, they agreed that maybe I need a new doctor. I really do not want to leave this rheumatologist, however, I may take the advice of these folks and go to a pain clinic for help with my pain.
You see, my rheumy is treating me for depression, but I am not sure he realizes that I am depressed because I am in so much pain right now. I mean seriously, in pain. If you add in the toxic fatigue and everything else, I am in a flare and need help here. I truly believe that if I got the pain meds to help with the pain, I may not be depressed. The pain makes me be a pain. When I am in pain, I am grouchy, grumpy, and depressed because I do not want to be in pain.
Now I need to make an appointment at the pain clinic and see what happens. I will update when I go.
Have any of you had issues like this before? I really could use some feedback from others who have experienced this as well. Thanks!
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10/19/2010 | Categories: All things lupus, Family, Life, Medications | Tags: benlysta, Clinics and Practices, doctors, Family medicine, Health, lupus, Medical Specialties, Medicine, neurologist, pain, Pain management, pain medications, rheumatologist, Rheumatology, United States | Comments Off
Yes, I did it again. I spoke too soon. I was in such a great mood and felt so good that I did a bunch of things today. Guess what happened next? For starters, it started raining. Rain is a good thing but with the cold front, it brings more pain and believe me, I am feeling it. Next I started feeling like I was coming down with something and found my lymph nodes are swollen again. Add my hair is falling out and you can see the wolf is punishing me for today.
I hope that tomorrow will be much improved. I am making my mind up that I will have a great day tomorrow! The mindset of thinking positive definitely helps. I have a question though….do other lupies feel like this when it rains? That would be a nice poll question. Ok, will make the poll then and see what the concensus is among those of us with lupus.
So for now I will just post this short note. Have a great night everyone and think positive so our days are quality!
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10/13/2010 | Categories: All things lupus | Tags: Beauty, Cancer, flare, Health, lupus, Lymph node, Medical Specialties, Medicine, Pain management, Rain, United States | Comments Off
As someone who comes from a medical professional background (nursing), I had to learn how to medspeak, or the language of medicine with its roots of latin and long unpronounceable words in nursing school. Since my diagnosis, I have found this knowledge to be an asset to understanding what is going on and the variances of the disease. I have also found that many others have been forced to learn the lingo or medspeak upon their diagnosis as well.
When you are diagnosed with a chronic, incurable disease, the first thing many do is look it up online. This can be good or bad. There may be a lot of information out there, some good and some bad, some not important, some important. Some of the information will scare you to death if you read it. For example, when I was first diagnosed with lupus, one of the first things I read was that the life expectancy was ten years. I should point out that I passed the ten year mark about 9 years ago. Unfortunately, that information is still out there and some may stumble upon it and freak out.
With medical diagnoses and prognosis changing every day, it is no surprise that many people are confused by what they find. I think I would recommend if you are researching your diagnosis, start with the national organization in your country. Most times, they have the most current, accurate information available. Once you have waded through the goldmine of information you find there, give it time to digest and process in your mind.
Another great source is to join a support group in your area. You can find out if there are any by once again checking your national organization’s website or calling your local hospitals and asking. Many times, your doctor may even know of any support groups as well.
One of the best ways to investigate the medical lingo is to take it word for word. When you happen on a word you do not understand, stop and look that one word up individually and then try to make sense of it as a whole. Put it in perspective with the sentence. If there is a sticking point, write it down and ask your doctor. Better safe than sorry.
On the whole, always remember that unless it is from an “official” website, it may not be as accurate as it could be. Caution is to be exercised above all and always consult your physician as well.
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10/04/2010 | Categories: All things lupus, Life | Tags: Conditions and Diseases, Diagnosis, disease, Health, Language, Life expectancy, lupus, Medicine, Support group | Comments Off
My area has a Lupus Support Group that meets once a month. The meetings are help the third Tuesday of each month at the Atrium Medical Center. Here is all of the information for those of you in the Middletown and surrounding areas:
Meets: Third Tuesday of each month
Address: Atrium Medical Center, 1 Medical Center Drive, Middletown, OH
Classroom 5C
Rhonda Roberts, Facillitator
Contact 440-591-7775 or Rhonda@LupusCincinnati.org
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10/03/2010 | Categories: All things lupus, Life | Tags: Conditions and Diseases, Connective Tissue, Health, lupus, Medicine, Musculoskeletal Disorders, Systemic lupus erythematosus, United States | Comments Off
10.01.2010
Campground
I am writing two separate blogs tonight. The first one was light hearted and a true story about changes I have made in my old age. This one is more serious. It is about others and how they can affect us.
As I posted earlier, I saw my neurologist today and had a long visit. You can read about it here in another post. I am not discussing it now. What I am discussing now is the apathy that others have towards me. This is one of those ugly posts so stop reading now if you do not want to know the ugly truth.
I came home from the appointment this morning and stopped and got a few groceries. I arrived home and hubs helped me carry the groceries in. Thanks honey for helping me. I then got my things together to come camping. In all this time, over an hour, I was never once asked about my appointment, how it went, nothing.
We came on out to the camper. While he surfed the internet, I laid down and took a short nap. When I woke up, I asked if I could please use the computer to research some things. He said what things? I told him I wanted to research the new tests and medications the doctor ordered today. Here is the ugly part now… he actually said to me “I do not understand why you want to spend all your time in a hospital“. Not one word about what happened at the office visit or anything. I mean, I actually got lost at the hospital and had to get help to find my way to the doctors office but could I tell him? No.Thanks for the interest sweetie.
It just infuriates me at times how his illness and his issues and his life are always so much more important than mine. His standard line lately is “I don’t need to hear this right now”. Yes, he has tuned me out. That is the reason I blog. I have to vent somewhere or I will explode. The total lack of empathy is amazing to me though.
You see, when he has appointments, he always has me there. I have always thought that you should do to others the way you want to be treated. Anyway, I go with him, hold his hand, give him encouragement, you know, like a spouse should do. He, on the other hand, feels no need to be involved in my care other than to say he thinks I need a new doctor so I can get stronger pain pills.
So, now I have ranted and hope that tomorrow is a new day. Maybe he will think about it. Most likely he won’t. It is sad to not be able to share important things with your spouse. I would love to, but he tells me that line about not needing to hear this right now. Gee, maybe I don’t want to be sick, but it is a fact and I am sorry if my illness inconveniences you. So, I cannot talk about it, cannot mention feeling bad (he hates it when I mention my real feelings) and instead I am reduced to downplaying it all and pretending all is ok. Sad, isn’t it?
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10/02/2010 | Categories: All things lupus, Family, Life | Tags: blog, Camping, Health, Hospital, Medicine, neurologist, Old age, Physician | Comments Off
Today I went to see my neurologist for a re check and other issues. He is a relatively new doctor on my list, so I am still seeing how he reacts to me. I have been pleasantly surprised so far that he is not only very personable but knows his stuff too. He also has passed my test for researching my issues and passed with flying colors.
On to the visit. We discussed the periphreal neuropathy in my feet and hands and it was decided that I should start upping my dosage of neurontin as slowly as I feel comfortable doing it. My feet are also turning purple (as I have discussed before on here) and so he checked them and said I have slow capillary refill so he is ordering a vascular study of my legs and feet. I also need to have new bloodwork (oh yippee).
Now onto the migraine situation. I am on midrin, an older migraine medication that treats the headache when it occurs. I have taken it for years now to help with these awful migraines. It has done the job pretty well, although I have breakthrough pain at times. After discussing this, my neurologist suggested we try topomax instead. He said that it helps to prevent them from starting and that we should see how it works. It also has a quality similar to neurontin but in smaller quantity for the neuropathy as well so it would help a little in thaat department as well. I do have to watch for kidney stones, since I am prone to them and this medication can cause them. I know how they feel so I hope to keep the stones at bay.
If anyone out there has used topomax, please let me know how it works for you. I am always curious to find out from others how a medication helps them. Since this is a new one for me, I will be interested in hearing from anyone on it.
Now, I am off to the campground for a night or two to digest this latest development in my care and research it as well. I am sure I will be posting the results here. In the meantime, thanks for all the support I get from you all. It really does help me to cope with all the manifestations of the wolf.
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10/01/2010 | Categories: Uncategorized | Tags: Conditions and Diseases, Headache, Health, lupus, lupus flare, Market research, Medicine, migraine, Neurological Disorders, Peripheral neuropathy, Research, Treatment Centers, vascular studies | 1 Comment »
I am posting these articles to show why many doctors feel unable to adequately treat chronic pain with medications that have been shown to not only work for those with chronic pain, but can actually lead to a much improved quality of life.
Please read these articles and form your own opinion. I welcome comments as well.
“The Police State of Medicine”
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Introduction —
First, I would like to thank the Drug Policy Foundation for the opportunity to speak to you today. I understand that the rights of patients to effective treatment and the impact of current drug policy on the doctor-patient relationship are very much on your minds, as they are on mine. I offer my story as a case study of regulatory abuse, as we try to fashion an adequate political and legal response to what I think of as “The Police State of Medicine.”
I will begin with a review of the legal events in my case. I will then tell you about my patients and the impact of the legal action against me on them. Finally, I would like to address two related questions:
How does the police-state of medicine affect medical care?
and. . .
What can we do about it?
What Happened to Me?
In May of 1996, my license to practice medicine was suspended without a prior hearing by the Commonwealth of Virginia after the deaths of two of my patients were incorrectly attributed to my treatment. I was charged with having prescribed excessive doses of opioid analgesics in the treatment of 30 patients who, it was acknowledged by the Board of Medicine, had conditions causing intractable pain. The charges were brought without any apparent reflection by the Board on the applicability of Virginia’s Intractable Pain Act, upon which I was relying for legal protection.
The hearing might well be characterized as a Kafkaesque inquisition. This was not anything close to an open-minded search for the truth in which legal adversaries present evidence before an impartial finder-of- fact. This Board thought it knew from the outset what constituted proper pain management, and it thought it knew that the high doses of medication I prescribed to many of my patients were illegitimate and without clinical rationale. The number of pills I prescribed was all the evidence the Board or its prosecutors thought they needed. They had not even bothered to subpoena my medical records!
When we pointed out that, under the Virginia Intractable Pain Act, dose alone was an insufficient legal basis for disciplinary action, rather than dismiss the charges, the hearing was turned into a fishing expedition for evidence with which to smear my name and to provide a rationale for the harm they had already caused me and my patients by the summary suspension. The prosecuting attorney sponsored testimony to the effect that I was taking money under the table for prescriptions — testimony which was subsequently shown to be pure fabrication — without disclosing his witness’ prior felony conviction for fraud. He also presented testimony from an addiction specialist, who, it turned out, had himself been disciplined over a ten year period by this very Board. He had been an anesthesiologist who was addicted to Fentanyl, a strong opioid used in anesthesia, which he stole from his patients — leaving them to buck in pain on the operating table.
My experts — all pain specialists of international repute (one of whom, Dr. C. Stratton Hill, is being honored at this conference) — were harassed by cross-examining Board members. My patients, many of whom had traveled from distant states, were ignored, ridiculed, insulted, and ultimately condemned to pain and misery.
After this caricature of a hearing, my license was revoked. Although the revocation was stayed and my license was restored after three months, my authority to prescribe the controlled substances necessary to treat my patients was withheld. The Virginia proceedings set in motion a cascade of legal action against me. The authorities in the District of Columbia, where I was actually in practice, suspended my license. This provided the DEA a basis to revoke my registration — although ultimately they agreed to transfer my registration to my Virginia address with restrictions paralleling those imposed by the Virginia Board.
After an informal hearing in August of 1997, the Virginia Board restored my ability to prescribe pain medicine and accepted a protocol for treating pain patients that was essentially the same as I had been using prior to my suspension. By doing so, the Board appears to have accepted the legitimacy of the therapeutic principle that calls for adjustment of medications according to patient response without limit as to dose or combination. The Virginia Board’s action remains, at best, a symbolic gesture without practical consequence, however, unless and until the DEA restores my registration and the Board has an opportunity to demonstrate its good faith.
An appeal from the original Board Order of August 1996, in which the Court is called upon to interpret the extent, if any, of the safe-harbor protection afforded by the Virginia Intractable Pain Act, was heard in August of this year (1997). The Court has not yet issued its opinion. Nor has the DEA responded to the application I submitted over four months ago for full restoration of my prescribing privileges. It’s not their pain.
Only participants can have any idea of the exorbitant personal and professional costs such legal proceedings exact. But this was nothing, when compared to the impact on my patients.
What Happened to My Patients?
At the time of the Virginia Board’s suspension in May of 1996, I had over 200 patients with intractable pain from all over the United States. Some of their stories are gripping:
A young woman whose daily headaches were so bad that she had the nerves to the back of her head cut, only to find that after a brief respite, her pain came back worse than before.
A gentleman, now in his 50s whose legs had to be amputated when he was 18 years old. They had been frozen when he was trapped in his car after an accident in 30-below weather. He subsequently had the lower portion of his torso removed. With the benefit of pain medicine, he was able to work and support himself.
A physician who had such severe reflex sympathetic dystrophy that his left arm became gangrenous and had to be amputated.
A woman in her thirties whose leg had been almost completely severed at the thigh in a motorcycle accident. The orthopedist who reattached her leg also treated her pain with opioids. But after he retired, noone would continue her treatment.
There were over 200 of these patients with crippling pain from failed backs, arthritis, multiple sclerosis, interstitial cystitis, arachnoiditis, RSD, TMJ, trigeminal neuralgia, and phantom limbs. . . the list goes on and on and on. Many of them had come to me after years of unsuccessful attempts to obtain relief from a multitude of procedures, doctors, and pain clinics. They were treated like addicts and criminals.
They were stigmatized, insulted, neglected and abandoned. Betrayed by the whole medical profession with the refrain, “I would like to help you, but I can’t. I don’t want to lose my license.” But who can blame the doctors, who are themselves the victims of the thuggish drug-control police and the heartless and mindless bureaucrats who serve on boards of medicine.
When my patients came to see me, they were terrified that I too would reject them, or subject them to more tests, more procedures, more expense and delay. But my approach was different. I asked them what had worked in the past, and that was my starting point. I let their response to medication guide my treatment. If one medication didn’t work, or made them sick, we — the patient and I — tried another. If a medication became less effective, we increased the dose. Sooner or later, we found what worked best for each patient.
The response to pain relief was dramatic. People who hadn’t worked in years went back to work. People who could barely get out of bed began to move, even to dance. Some no longer needed crutches or a cane. Almost everyone reported that their lives were better. Many said that I had given them their lives back.
When word went out that my license had been suspended, there was panic as patients contemplated what it would mean for the pain to return. Lives that had been rebuilt on the basis of pain control had lost their foundations. After I lost my license, the fear was palpable: pharmacists afraid to fill my prescriptions, doctors afraid to take my patients, and patients desperate for continuity and certainty. Added to the stigma of taking morphine, methadone, or Dilaudid, was the stigma of being one of “Dr. Hurwitz’s” patients.
There were a few happy stories. A few physicians who had known my patients before they came to me and saw their improvement while under my care were willing to continue the treatment. Pain specialists at some of the academic centers and a few brave doctors in private practice were willing to take my patients. Some of my patients, those who had saved a reserve supply, were able to obtain a modicum of pain relief and avoid the symptoms of abrupt withdrawal.
Some stories were not so happy. A few patients went through horrible withdrawals — a number who availed themselves of medical help were admitted to psych units and detoxed cold turkey. Some found doctors who were willing to treat them, but were unwilling to continue what had been successful medication regimens. Some were exploited by doctors who imposed expensive and risky procedures as a condition for receiving pain medication. And some just gave up, exhausted by insurmountable obstacles.
There were two suicides directly attributable to the prospect of inadequate pain control.
How Does The Police-State of Medicine Affect Medical Care?
The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain. Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.
In what other context do we sit in judgment of a patient’s moral worth to determine his eligibility for treatment? Is a former addict with AIDS less entitled to medical care than the victim of a contaminated transfusion? Or less entitled to pain relief with opioid medications?
To me, the unequivocal answer is no. We are not society’s policemen, nor should we be. I am not arguing that we should be indifferent to the use to which our prescriptions are put. I am arguing that patients deserve the benefit of the doubt, that a Draconian response to the occasional, but inevitable physician error in providing medication to the dishonest patient who may be misusing or diverting medication has the inevitable consequence of denying pain relief and perhaps condemning to death the honest one.
Effective medical care requires trust in both directions. A patient must trust that his physician is acting in the patient’s medical interest. But how is this possible when the physician’s career is threatened by doing so? A physician must trust that his patient is reporting his circumstances and symptoms accurately. How is this possible when the patient is afraid that the truth will look suspicious, and that merely looking suspicious will prompt abandonment?
Under current regulatory policies, distrust governs the treatment of pain and subverts the usual clinical calculus of risk and benefit. Patients are subjected to a modern version of trial by ordeal, where their credibility as patients is measured by the pain and indignity they are willing to endure and the expense they are willing to incur. And physicians who are unwilling to impose these indignities as a condition for pain treatment are punished with the destruction of career, reputation, and livelihood.
In the end, the only important clinical question should be: What is best for the patient? As physicians, we treat individuals for the simple reason that they are fellow human beings, and our treatment must respect their humanity. Respect requires that patients be afforded the dignity of choice — the freedom to choose or refuse treatments based on their calculus of risk and benefit and cost. The current regulatory regime effectively denies most patients the dignity and respect that simple humanity requires.
What Can We Do About It?
The stakes in this battle are too great to leave its outcome to the valiant efforts of the dedicated few. We need reinforcements in the form of legal help, publicity, and financial support to help make boards of medicine and the DEA legally and politically accountable for the misery they engender. Intractable pain acts are not enough. And if boards of medicine were, as a practical matter, legally, ethically and politically accountable, such statutes would not be necessary.
Our strategy should be to raise the cost to the regulators of their regulatory tyranny and to lower the cost to physicians, pharmacists, and patients of defending their rights. We need to destroy the public’s naive presumption of the regulators disinterested good faith, to debunk the myth that medicine is being regulated in the public interest, and to reveal the abuse of power for what it is. Only then will we empower physicians to help their patients, and patients to control their pain.
* Dr. William Hurwitz, MD, is 51-years old and a graduate of Columbia College (1966, BA), Stanford Medical School (1971, MD) and George Mason University School of Law (1996, JD). Married with two children, Dr. Hurwitz resides and now practices medicine in McLean, Virginia — prior to the revocation of his medical licenses, he practiced in Washington, DC. Dr. Hurwitz and this issue have been the focus of in-depth reporting by CBS’s “60 Minutes,” “US News & World Report” and PBS’s John McLaughlin. |
Remarks By Dr. William Hurwitz,* MD
BEFORE
October 18, 1997
NEW ORLEANS, LA
The Drug Policy Foundation*
Copyright © 1997 by Dr. William Hurwitz, MD
Deadly Morals
article By Katherine Eban Finkelstein
Copyright Playboy Magazine, August, 1997
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THE DEA IS BUSTING DOCTORS FOR PRESCRIBING DRUGS-AND PATIENTS ARE DYING IN PAINDONALD DEWBERRY, 44, a retired aircraft mechanic, went to Dr. John McFadden several years ago after two failed surgeries for degenerative disk disease. 7he pain in his neck was crippling, and even moving his eyes triggered it. Dr. McFadden, who is medical director of the Tupelo Pain Clinic in Tupelo, Mississippi, prescribed Dewberry narcotic painkillers known as opioids, which are highly effective and rarely addictive when taken to relieve pain.Unfortunately for McFadden, he was under surveillance. Federal and state narcotics investigators first went to his red-brick clinic in 1987 on a tip from the Mississippi State Board of Pharmacy that he was overprescribing painkillers. They sifted through his inventory logs for evidence that narcotic medications had been diverted to the street for black-market resale. McFadden claims that only minor record-keeping errors were found. Yet because McFadden specialized in pain treatment (and therefore had prescribed narcotics such as Vicodin and Tylenol #3), he was subject to continuing suspicion. Over the next nine years, agents from the Mississippi State Board of Medical Licensure periodically investigated his prescribing habits.
A new front had been opened in the drug war, and patients in pain were potential enemies. Even though McFadden, the only pain specialist in northern Mississippi, administered legal medications of great benefit, his prescribing of narcotics targeted him as a suspect.
In March 1996 a state medical board investigator arrived at his clinic with a search warrant. “We had been expecting him. We knew he had to do his job, so we were friendly and said, ‘You can look at any-thing you want,”‘ McFadden recalls. The agent seized the medical charts of 36 patients. Several months later McFadden was notified that the medical board had charged him with 11 counts of violating the Mississippi Medical Practice Act, including unprofessional conduct “likely to harm the public.”
After two days of administrative hearings and 30 minutes of deliberation, the medical board-whose members are appointed by the governor-suspended McFadden’s medical license and prohibited him from prescribing a variety of controlled substances on an outpatient basis. McFadden’s censure has had a chilling effect in Mississippi medical circles. To avoid similar repercussions or scrutiny, other area doctors have virtually stopped prescribing narcotics. One doctor in Tupelo posted a notice in his waiting room: DO NOT ASK ME TO REFILL PAIN MEDICATIONS. In a doctor’s office 40 miles away in Corinth, a sign read DON’T ASK FOR OPIOIDS.
McFadden’s patients, meanwhile, were left in pain. When Dewberry returned to his longtime family practitioner in nearby Oxford and asked for a prescription, the doctor chewed him out. “‘You’re just an addict,”‘ Dewberry recalls him saying. He has since stopped taking medication, and the pain keeps him in bed: “I’m in this haze of fighting pain. I’m trying to raise two teenagers, and I have a mortgage on the house. But if I said, ‘Heck, if it all falls to pieces . . .’ then it does.”
By almost any measure, America has lost its war on illegal drugs. Cocaine and heroin still cross the nation’s borders. “Cat,” or methcathinone, can be purchased in any city, despite endless law enforcement efforts to buy and bust. Meanwhile, the real threat from illegal drugs has fed America’s opiophobia, an irrational fear of narcotic pain relief. Needing a winnable war, the government has cracked down in doctors’ offices. Across the country, state agents, allied with the DEA, have staked out pain clinics under the assumption that wherever narcotics are prescribed, diversion of the drugs will soon follow. In pursuing this theory, the government has criminalized an entire class of patients and scared doctors into abandoning them.
As a result, pain is grievously undertreated. According to the National Chronic Pain Outreach Association, an estimated 34 million patients suffer chronic pain and lose 50 million workdays a year. Seven million of these patients cannot relieve their pain without opioids, but there are only approximately 4000 doctors in the country willing to prescribe them. A recent New England Journal of Medicine editorial noted that 56 percent of cancer outpatients and 82 percent of AIDS outpatients received inadequate pain treatment. Fifty percent of hospitalized patients with a range of illnesses also received inadequate pain treatment.
Our drug war has overshadowed our pain crisis because the former is fought by politicians, while the latter is lived by patients who are often confined to bed. In the absence of an effective pain lobby, politicians have been able to whip the public into an opiophobic frenzy. “All you have to do is scream about the drug hysteria, then everyone tucks his tail and runs,” says Dr. Stratton Hill, a Houston pain specialist. “No politician wants the charge that he’s soft on drugs.” Late last year the Clinton administration challenged referenda in Arizona and California that would legalize the medical use of marijuana for easing the pain and nausea that are related to cancer and its treatment. This past March the president emerged from knee surgery declaring that he would not medicate his pain with narcotics.
While doctors may shrug off such proclamations, they cannot afford to ignore the investigative machinery that opiophobia has built. “We have established a bureaucracy to catch doctors making errors,” says a leading researcher in pain treatment. “As a result, fear is endemic among physicians.”
In 1984 Congress handed the DENS Office of Diversion Control discretionary power to revoke a doctor’s registration to prescribe medicine. (In order to write prescriptions, doctors must be registered with the DEA.) The 1984 legislation enabled the government to yank this registration if a doctor commits “such acts as would render his registration . . . inconsistent with the public interest.” This phrase, buried in the fine print of the Dangerous Drug Diversion Control Act, significantly expanded the ODC’s latitude. Before 1984, the agency could revoke a doctor’s registration for only three reasons: If he had falsified a prescription, was convicted of a felony relating to controlled substances or had his state medical license revoked, denied or suspended.
With the passage of the act, the rules changed overnight-from black-and-white to gray. Enforcers could pronounce guilt and revoke a registration simply by declaring that the public interest had been threatened. Suddenly, prescribing that was determined to be against the “public interest” was being used as prima facie evidence of diversion. The government had effectively criminalized narcotic pain treatment and had begun to practice medicine.
Since its creation in 1973, the ODC has had a dual function. It was charged with ensuring the availability of pharmaceutical drugs for legitimate needs and preventing their diversion for illegitimate sale and use. But the 1984 drug bill changed everything. Despite limited data on the origins or amount of diversion, the agency targeted doctors and patients, performing search and-seizure operations in the offices of baffled clinicians. The peremptory justice was supported by Orwellian logic:
Patients at pain clinics use narcotics.
Narcotics can be addictive.
Therefore, pain patients are addicts.
This new system encouraged doctors to suspect the motives of their patients. “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one,” explains Dr. Frank McNiel, a family practitioner in Knoxville, Tennessee.
In deciding who to bust, investigators rely heavily on medication categories that were established in 1970 under the Controlled Substances Act. The DEA groups medications into five different “Schedules,” depending on their potential for abuse. Schedule V contains some prescription drugs as well as over-the-counter cough medicines, which are rarely abused. Schedule IV includes benzodiazepines such as Valium. Schedule III contains anabolic steroids, some barbiturates and blends of aspirin and codeine. Schedule I includes heroin, LSD and marijuana, which have no medical use, according to the feds.
Overwhelmingly, the 1984 provision led agents to focus on Schedule 11. The painkillers here, including morphine and Dilaudid, have a high street value. Looking for a way to combat diversion, agents relied on the all-purpose “public interest” dictum. They used it as a preventive tool, to bust law-abiding doctors prescribing medication that might be diverted down the road. On both the state and federal levels, the distinction between enforcement and prevention collapsed, as did the distinction between criminal behavior and the treatment of pain. Once Schedule II drugs were involved, the DEA decided to shoot first and ask questions later.
Federal and state arsenals are now bristling with weaponry. The DEA performs long-range computer surveillance with the Automated Reports and Consolidated Orders System. This database logs every transaction between manufacturers and distributors of controlled substances. If a large quantity of barbiturates, for example, were distributed in a certain city, it could mean that an organized group had diverted the medication. Law enforcement authorities would launch an investigation.
States use their own monitoring apparatuses to track the prescriptions of individual doctors and their patients’ habits. Some states require doctors to report even their terminal cancer patients as addicts if they are prescribed opioids for a certain period of time. In eight states, including California and New York, doctors who want to prescribe from Schedule II must order registered prescription forms that have multiple copies: The doctor retains one, the pharmacist keeps one and the third copy is sent to state health or narcotics-control agencies. Studies show that doctors in these states have decreased the amounts of Schedule II drugs they prescribe by 40 percent to 60 percent. Possibly, some of the drugs had been diverted and the crackdown was actually successful. But studies also have shown that doctors in these states increased their prescribing of less-regulated painkillers by almost the same percentages. These alternative drugs are often less effective in treating pain and can also be more dangerous to patients than are Schedule II drugs.
The scrutiny has led doctors to ration pain medicine and ignore pain — necessary restraint in a world of diversion, enforcers would have us believe. “Even if you treat a patient with a terminal malignancy, it’s irresponsible to write a prescription for 500 Dilaudid tablets,” says Dr. James Winn, executive vice president of the Federation of State Medical Boards. “If the patient dies three days later, in a legitimate family the rest should be flushed down the commode. But sometimes a family member picks them up. We have a major drug problem in this country, and a lot of it comes from doctors.”
The DEA provides no detailed record of the amount of diverted prescription drugs it recovers each year. The agency also lacks comprehensive data on the origin of the medication it seizes. Thus, despite Dr. Winn’s assessment, there is little evidence to suggest that the narcotics which originate in doctors’ offices are the same drugs which wind up on the street. In fact, DEA officials concede that the majority of black-market narcotics originate from crime rings in foreign countries, where the drugs are manufactured illegally.
In February ODC director Gene Haislip retired after 17 years, leaving behind an agency known for its intimidation tactics. Haislip maintains that legitimate prescribing has not been deterred at all by his policies. “I don’t believe doctors would not prescribe because of there being a government report any more than they would not make money because they have to report it on their income tax,” he claimed confidently in a speech that outraged doctors.
Despite this shaky analogy, the IRS doesn’t destroy your livelihood, it simply takes a portion of it. A DEA fine, or even a protracted state medical board investigation, can threaten your medical practice, your income and the wellbeing of your patients. A state board ruling nearly ruined Dr. McNiel’s life. A family practitioner who ran an outpatient clinic in Mosheim, Tennessee, McNiel vividly remembers the day he was first targeted. “In 1992 an investigator with a badge walked into my office and said I was under investigation. She had a list of patients and said she wanted to look at charts. She dug around for a few days, then disappeared.” As McNiel puts it, her visit “encased the office in ice.”
Working for 15 years as a missionary doctor in Honduras and Nicaragua, McNiel had witnessed all kinds of injustices. But nothing could have prepared him for what happened next. More than a year later, he received an official envelope that contained a long list of charges: “The only thing it didn’t include was rape because they didn’t think of it. They make you out to be the scum of the earth. This is devastating to a person’s self-esteem.” The medical board brought charges against McNiel of nontherapeutic prescribing in the cases of ten patients, in addition to mentioning, without any explanation, “other cases too numerous to count.” The board, seemingly making no effort to conceal its arbitrary methods, also proposed more than $20,000 in fines.
National data suggest that such administrative intimidation is widespread. In 1994 state medical boards took action against 434 physicians for prescribing in violation of state medical practice acts, according to the Federation of State Medical Boards. However, the DEA, which often works with state medical boards, pursued only six criminal cases against doctors in 1994, according to information obtained from a database of justice Department files. Of these, only one doctor, from Puerto Rico, was found guilty.
The data from 1995 are similar. State medical boards took 392 actions against doctors for prescription violations. Only 11 cases were pursued by the feds that year, but there were no criminal findings. Two of the cases were dismissed because of minimal federal interest. The picture is the same at the state level. Last year in New York, the Bureau of Controlled Substances adjudicated 36 cases against doctors. However, 14 were civil cases, 14 had no charges issued and there was a smattering of warnings. Only one case was criminal.
Though these numbers seem small, each doctor works in a close-knit community. The flash of a badge can send shock waves through a hospital, or a state, and indelibly change prescribing habits. Some doctors in New York still shudder when they think of Dr. Ronald Blum, former deputy director of the Kaplan Cancer Center at New York University. In 1987 two state drug agents with guns and badges arrived at Dr. Blum’s office. Though Blum was not arrested, the agents threatened to slap him with three record-keeping violations. Eighteen months later, he received a letter of warning and the investigation against him was dismissed. Nonetheless, Blum’s “case” was used to bolster the statistics on state drug crackdowns.
The DEA, for its part, is quick to point out that its drop-ins on doctors are not arrests. An agency spokesperson explains: “It is important for people to realize that just because the DEA initiates an action, that doesn’t mean there’s criminal activity.” Which is just the point.
A lawyer in Austin, Texas who has defended numerous doctors from overprescribing charges describes the agency’s numbers game: “The DEA agents show up like a blitz, unannounced, in their little black jackets. They’ll scare the you-know-what out of a doctor and get him to surrender his DEA registration. They get instant results for their own data, and they make a quick bunch of money for the government, a $25,000 fine. But the doctor is screwed, because he doesn’t have his DEA number and can’t reapply for a year. When he does, the medical board says, ‘You gave up your DEA number. You must have done something wrong.”‘ It is a rare doctor who, when threatened with these sorts of grave charges, will refuse to surrender his registration.
The Mississippi medical board that heard McFadden’s case makes it clear that it hails administrative citations as victories. “We are number one in the country for bringing the most disciplinary actions per 1000 physicians,” says Dr. Thomas Stevens, the board’s executive officer. “I’m not proposing that we’re the best in the world. But it might be a sign that we do a good job.” Zealotry aside, the board’s complaint counsel, Stan Ingram, contends that the hearings are fair. “The board members trying the case play no role in the investigation and have little knowledge of the facts prior to the hearing,” he explains. In fact, a board member who is McFadden’s neighbor was permitted to recuse himself; thus due process was protected.
Nonetheless, McFadden’s son-in-law, Sean Milner, a Jackson, Mississippi based attorney, was appalled by the blatant conflicts of interest that riddled the hearing. For example, a state investigator collected the evidence and Ingram prosecuted the case; both are on the board’s payroll. “It’s the kind of justice you see in third world countries,” Milner says. “The judges are the investigators. They hire the prosecutor. They sit as the jury, plus referee the match. How many cases do you think they lose?”The board did not demonstrate that patients had complained. It presented no evidence that McFadden had harmed patients. The board did enter evidence that McFadden kept incomplete records. On several occasions, for example, he prescribed from home when his patients had crises, then failed to enter those prescriptions into his office records. Yet the board’s medical expert, a neurosurgeon, never addressed record keeping. Instead, he debated one of McFadden’s diagnoses, then testified that in his opinion, McFadden had treated his patients in good faith.
“I don’t want to use the term witch hunt, but I don’t know how else to describe the Board of Medical Licensure,” says a pharmacist who used to fill McFadden’s prescriptions. McFadden has begun the arduous process of appealing the board’s ruling.
It is now probably easier for a drug addict to buy black-market prescriptions on a street corner than it is for Dewberry to obtain a legal prescription for Vicodin. Meanwhile, there is no evidence that this policy has slowed real diversion, according to Dr. James Cooper, associate director of the clinical services research division at the National Institute on Drug Abuse. “It’s misleading to say that diversion comes only from prescribing. The research data aren’t available. No one knows the nature and extent of diversion from doctors’ offices, thefts, forgeries and smuggling.”
On paper, the DEA supports the use of opioids to treat pain patients. Its 1990 Physician’s Manual states that narcotic analgesics have “a legitimate clinical use and the physician should not hesitate to prescribe, dispense or administer them when they are indicated for a legitimate medical purpose.” In reality, the agency’s crackdown has been so complete that obtaining legal pain medicine has become practically an underground activity. On August 10, 1996 the Virginia Board of Medicine revoked Dr. William Hurwitz’ license, claiming he had overprescribed opioids. Many of his 220 patients, who suffer intractable pain and came from around the country to see him, have been unable to find new doctors. Several patients are being tracked by DEA agents; they speak to one another through Web sites. Two committed suicide because of the prospect of untreated pain. One recorded a final videotape, saying that his inability to find pain relief led him to seek death.
Dr. Hurwitz, 51, who obtained a law degree after he was first investigated in 1991, believes the state shouldn’t interfere with a patient’s right to treatment: “It is important to assess patient reliability. But I refuse to hold a moral screen over eligibility for medical care.” Although some of his patients had prior addiction histories, he issued them prescriptions for clear medical needs. “I wanted to make sure that people were as functional and comfortable as possible,” he says. “I felt the sheer force of numbers would protect us, by illustrating the need for pain treatment.”
That illusion has been shattered. A dozen of his patients have contacted Dr. Jack Kevorkian in Detroit, who receives several hundred calls a week from patients suffering from intolerable pain. In April, Susan T., a registered nurse and a former Hurwitz patient, sent Dr. Kevorkian her final set of medical records.
Years ago, she had been vital and athletic. But searing pain in her legs and buttocks from a botched gynecological operation and a subsequent back injury left her unable to get out of bed. Her only relief came from Hurwitz, who had her up and walking with Percocet and morphine. Since his license was revoked, she has called more than 15 doctors. Most refused to treat her after she disclosed her connection to Hurwitz.
This experience led Susan to Kevorkian. She explains, “I’m pushing hard to get financial things in order, to set up a revocable trust and have my house cleaned out of extra stuff so my husband won’t have to do it.” Of course, she could take another patient’s pain medication. But that would be diversion. “It’s plain illegal and there’s a line,” says Susan. “Many things are worse than death. One of them is losing the last of your dignity.”
Patients who need narcotics are often given less-regulated alternatives that are far more dangerous. Doctors who fear scrutiny rely heavily on antiinflammatory drugs such as arthritis pills, which can cause internal bleeding, liver damage and ulcers. One study has shown that these alternative medications kill 17,000 pain patients a year. Comparatively, the death rate from narcotic painkillers is “vanishingly small,” says Dr. Brian Goldman, a University of Toronto researcher who has studied prescription drug diversion. “There is no gastrointestinal bleeding, or kidney or liver failure. An accidental death could be from respiratory failure, but pain triggers you to breathe.”
Despite these facts, says Dr. Goldman, “the underlying logic is that death is better than addiction. ‘Narcotics can addict you. The alternative drugs can kill you. Therefore, we should prescribe those.”‘
Doctors fear drug investigators and with reason. A 1987 DEA study showed that in states with a triplicate monitoring system, only 21 percent to 35 percent of physicians bothered to order the required forms. They simply chose never to prescribe drugs that created added scrutiny. As Michael Troyer, director of the National Chronic Pain Outreach Association, puts it, “Doctors do not want to be identified as treating pain patients for fear of being investigated.”
In 1994 the DEA tried once again to augment its weaponry against legal narcotics. The agency drafted legislation, the Controlled Substances Monitoring Act, that would have required physicians to use government-issued prescription forms for all controlled substances. The Department of Health and Human Services deftly quashed the plan, noting that the DEA had submitted no evidence that the scope of drug diversion required such “drastic action.” This defeat signaled a subtle ebb in public opiophobia.
Support for pain patients has been growing, partly fueled by outrage over regulatory excesses. Since 1989 ten states have passed intractable-pain treatment acts, supporting the medicinal use of narcotics for patients with severe pain. In Oregon, Republican state senator Bill Kennemer underwent a bitter personal experience that led him to sponsor what came to be known as the Compassionate Care Act. In 1990 his wife was diagnosed with terminal breast cancer, and she was in excruciating pain. After her third day on morphine, her oncologist said he’d have to take her off it: “‘It’s addictive,”‘ Kennemer recalls the doctor saying. “I looked this guy in the eye and said, ‘What does it matter?’ He said, ‘I’ll lose my license if I don’t cut her off from morphine.’
“If you can’t eliminate the pain, you have to medicate it,” says Kennemer, who forged an alliance between the Oregon Catholic Conference, Citizens for a Drug-Free Oregon and the Oregon Right to Die group.
As patients secure their rights, doctors have also been emboldened to launch counterattacks. In 1994 the Florida Board of Medicine went after Dr. Katherine Hoover, charging that she had overprescribed controlled substances to seven patients. After a two year battle in which Dr. Hoover acted as her own lawyer, the appeals court chided the medical board for being “overzealous” and dismissed its case as “founded on a woefully inadequate quantum of fact.”
Hoover had moved to West Virginia to run her family’s farm and practice medicine. Given the Florida imbroglio, she was rigorous about documentation. She required her patients to sign a contract about the risks and benefits of narcotic pain relief, and she committed them to using a single pharmacy and not misusing their medication. However, it wasn’t long before she heard from the West Virginia Board of Medicine.
The State Department of Health and Human Resources had filed a complaint with the board regarding Hoover’s treatment of five patients whose pharmacy records had been singled out for review. The complaint alleged that she had prescribed in excess of her peers. Hoover points out, however, that she is the only internist in the area committed to pain management. Who, then, are her peers?
Hoover is defending herself once again. “I am not pretending to be a lawyer. I’m doing all of this because I’m a doctor,” she says.
She has filed a $10 million suit against the State Department of Health and Human Resources and the West Virginia Board of Medicine, charging them with extortion, conspiracy to defraud and discrimination under the Americans With Disabilities Act. “Patients have a constitutional right to life, liberty and the pursuit of happiness,” says Hoover. “How can you be happy when you’re in that much pain?”
Several doctors are now considering following her lead and filing lawsuits against their medical boards for discriminating against pain patients. As Frank McNiel puts it, “A lot of the people hurting are not the ones who live on Functional Street. You’ve had three surgeries, you’re on disability, you’re broke and living in a trailer. You don’t look like Mr. Yuppie, OK?” McNiel knows that if doctors want to treat pain patients, they may have to fight a court battle to do so.
In 1995 the Tennessee Board of Medical Examiners determined that McNiel had violated several provisions of the Tennessee Medical Practice Act and had a “co-dependent” relationship with his patients. The board labeled him an “impaired” physician, forced him to surrender his DEA registration and mandated he join a co-dependents’ support group. After a prolonged hearing process that resulted in more than $100,000 in legal bills (which his malpractice insurance paid until the verdict came in and he was fired), his attorney’s advice was simple: Put your head in the guillotine and let them drop the blade. However, McNiel appealed.
justice was served this past March. A state appeals court reversed and vacated the ruling, stating in its decision: “The conclusions of the board and its judgment are without necessary support of material and substantial evidence.” McNiel succeeded in blowing up the board’s opiophobic logic that when it comes to drugs, no proof is required: We would not accuse you if you were not guilty.
Despite his victory, McNiel still awaits a knock on his door: “I have a moral obligation not to ignore patients who come to me,” he says. “But I’m terrified every time I write a prescription.”
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from the website drcnet.com
Chronic pain treatment
| One of the most serious problems in modern medicine is the under-treatment of patients in chronic pain.� More than 30 million patients suffer from chronic pain, and seven million of them cannot relieve their pain without opioids (narcotics), but only 4,000 doctors in the country are willing to prescribe them, according to the National Chronic Pain Outreach Association.� A New England Journal of Medicine editorial stated that 56 percent of cancer outpatients and 82 percent of AIDS outpatients were undertreated for pain, as were 50 percent of hospitalized patients with a range of conditions.Today’s massive denial of pain medication is a consequence of the social, regulatory and law enforcement climate created by the War on Drugs. Doctors can suffer loss of license or even incarceration, when the inevitable mistake of providing medicine to a dishonest patient who may be misusing or diverting medication occurs.� The climate has led to a situation in which most physicians are incorrectly trained in pain management and under- or non-treatment of pain is the norm.� Doctors who treat pain correctly typically must exceed the usual prescribed dosages, and in so doing draw the scrutiny of state medical boards and the U.S. Drug Enforcement Administration (DEA).� The DEA demands that doctors and pharmacies regularly provide them with records of every prescription for controlled substances that is written or filled.As Virginia physician William Hurwitz, whose case was featured on Sixty Minutes, explains, “The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain.� Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.”� Frank McNeil, a family practitioner in Knoxville, Tennessee, explains, “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one.”The fate of pain patients in the “police state of medicine” is grim.� Day after day of constant torment drives many to depression or even suicide. Many patients receive enough medicine to provide relief for four hours out of the day, and have to decide which 20 hours of the day they will spend in extreme pain.� Frightened doctors sometimes “fire” patients, cutting them off from pain meds suddenly, thereby putting them at risk for shock or withdrawal.� And those patients receiving adequate prescriptions live in fear that their doctors could be put out of business by the government or frightened into cutting them off.� Former addicts as well as former prisoners are in the worst situation of all, being automatically suspect — but pain patients from these backgrounds need and deserve proper treatment nonetheless.
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Pain Medication: Will I Become Addicted?
Addiction is a Real Risk, But Most Painkillers are Safe When Used Properly
From Marc Lallanilla
Created February 12, 2009
About.com Health’s Disease and Condition content is reviewed by the Medical Review Board
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(LifeWire) – Some pain medications have the potential for addiction, especially opioids, painkillers originally derived from the poppy plant. Despite this, most patients are able to use opioid pain medication without becoming addicted.Addiction to pain medication, however, is a serious problem worldwide. The Drug Abuse Warning Network (a program of the U.S. Department of Health and Human Services) noted that the opiate painkiller Oxycontin (oxycodone) was involved in more than 22,000 overdose-related emergency room (ER) visits in 2002 — an increase of 560% since 1995. Similarly, Vicodin (hydrocodone) was noted in more than 25,000 ER visits, and Duragesic (fentanyl) was involved in more than 1,500 ER visits, a staggering increase of 6,745% over 1995.
A number of factors have contributed to the growth in pain medication addiction. The availability of prescription drugs over the Internet has fueled an international trade in illicit drugs, including many counterfeit drugs. Doctors are also writing more prescriptions for painkillers: In 1991, about 40 million prescriptions for opioids were written; in 2007, that number jumped to 180 million.
Drug Abuse
The drugs most commonly abused fall into four general categories: stimulants like caffeine, nicotine and methamphetamine; sedatives like alcohol, benzodiazapenes and barbiturates; opioids (including heroin and opioid painkillers); and other drugs, like marijuana and hallucinogens.
Opioids are generally prescribed to be taken orally, but abusers often crush the pills into powder and snort or inject the powder. Because some opioids, like Oxycontin, were developed to be slow-release formulas, snorting or injecting opioids can result in a potentially deadly overdose.
Addiction to painkillers is not, however, the same as a physical dependence, which is common when such medication is prescribed on a long-term basis. Tolerance, when the body naturally adapts to the medication, can happen with some pain pills, which means higher doses will be required to experience the same level of pain relief. Addiction includes both physical dependence (tolerance and withdrawl) and out-of-control use.
The process by which a patient becomes addicted to prescription drugs is the subject of ongoing research. Use of the most commonly abused, prescribed medication, including opioids, causes a release of dopamine in the brain. Dopamine is a neurotransmitter that affects the brain’s processing (among other things) of reward-seeking behaviors and pleasure sensations. The brains of some people are more prone to addiction for reasons not yet well understood.
Patients’ personal histories also help reveal those who are at higher risk for abuse of prescription drugs, including painkillers. Patients with a history of alcohol or drug abuse, for example, are more likely to become addicted to prescribed pain medication. Younger patients, too, are more likely to become addicted, as are patients who work in a healthcare setting, where access to prescription drugs is easier.
Minimizing Addiction
There is some controversy over the long-term use of opioids for managing chronic pain, but there is also a growing consensus that for most patients, a well-managed treatment program of opioid use is appropriate.
To minimize the likelihood of painkiller addiction, doctors are advised to stay up-to-date on advances in pain management, to make thorough examinations and take in-depth patient histories — especially regarding substance abuse — and to develop a strategy for monitoring patients when prescribing opioid pain medication.
Patients, too, have an important role to play in preventing addiction to prescription pain medication. Complete honesty with the prescribing doctor — including disclosing information about past alcohol or drug abuse — is critical to successful pain management with opioids.
Patients and doctors alike, as well as friends and family members, should be aware of the signs of prescription drug abuse and addiction. These include getting multiple prescriptions from more than one doctor, “accidentally” misplacing prescriptions or losing pills, stealing or forging prescriptions, and taking higher doses of medication than prescribed.
Treatment for addiction to prescription pain medication includes managed withdrawal and detoxification, therapy such as behavioral counseling and groups like Narcotics Anonymous, and medications including methadone, buprenorphine and naloxone.
Sources:
“NIDA InfoFacts: Prescription and Over-the-Counter Medications.” nida.nih.gov. Aug. 2008. National Institute on Drug Abuse, National Institutes of Health. 26 Jan. 2009 <http://www.nida.nih.gov/infofacts/PainMed.html>.
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10/01/2010 | Categories: All things lupus, Life, Medications | Tags: chronic pain, Clinics and Practices, Complex regional pain syndrome, Health, Health care, Medical Specialties, Medicine, Pain management, Physician, United States, Washington D.C. | Comments Off
I actually found this on facebook from another fellow lupie. This is interesting because it discusses whether we as patients should become better consumers of our own health. Enjoy and share your opinions…
Healthcare & Social Media: Are e-Patients Crossing the Line?
Tweeter asks: ARE E-PATIENTS CROSSING THE LINE?
What line? Where is the line? In former times the line was malpractice. Honestly, that was the only solution to an inadequate or inept doctor. If a patient had a doctor that did not listen and the patient got even sicker or died as a result, he or his family could sue. It was simple. Everyone knew his role.
Patients asked doctors for answers. Patients paid the doctor for answers. Patients had questions and doctors had answers. If patients were harmed in the process, a lawsuit could be filed.
Today, it’s complicated. Patients who don’t get answers from their doctors can persevere in other ways. They don’t have to accept a suspect or inadequate answer. They can research information online. They can network with other patients. They can conduct online polls on their blogs. And they can search for doctors who are better equipped to manage their cases.
So, where are the lines today? Are patients who read medical journals out of line? Are patients who share their own experiences with others out of line? When do e-patients cross some kind of line of what is acceptable? How do they know when they violate the unwritten law, transgressing into a sacred realm of medical knowledge?
Two ways to look at e-patients
There are two ways to look at the modern scenario. There is the “Us versus Them” mentality where doctors and e-patients square off against one another. They draw lines between “our side” and “their side.” Alternately, there is the partnership model where healthcare becomes a collaboration between patients and doctors. Both have knowledge, one as an expert in his field (the doctor) and one as an expert in himself (the e-patient).
Most patients have their own examples of struggles to get answers from when doctors do not adequately address the concerns of patients. I will use two that affected me personally. I choose them because they demonstrate the dead end of drawing “lines” that sound too much to me like “Don’t drink from this fountain” or “Sit in the back of this bus.”
Two examples of un-empowered patients
My first example came when my husband was entering seminary. Money was tight and healthcare was pay as you go. On a retreat weekend, I experienced a sudden onset of excruciating joint pain I had not experienced before. At first, the pain was in my neck accompanied by redness. I suspected a spider bite since we were in the woods. Large doses of ibuprophen only helped a little. When the pain spread to other joints, the VIP’s at the event became concerned and insisted I seek medical attention.
My visit with the urgent care doctor was short. I described my symptoms and showed him the lacy red rash that covered my legs. He told my husband there was nothing wrong with me. My husband paid him one hundred dollars. I felt powerless to argue.
There was a happy ending: I arrived home to see that my little girl had a red face that looked like sunburn. If you hadn’t guessed it by now, I’m sure that gave it away. I had Fifth disease caused by Parvo virus. Our pediatrician recognized it immediately. The virus resolved without treatment. But I would have been more comfortable with prednisone.
Maybe it didn’t matter that I was embarrassed or spent money I didn’t have to be insulted by an incompetent doctor who did nothing to make me more comfortable. However, a similar scenario ended tragically. My grandmother was in a car accident when I was young. When the emergency room doctors released her as healthy, she continued to experience pain. When she returned repeatedly, she was assured that she was only upset. My grandmother was bleeding internally. She didn’t recover. My family sued.
I believe that her story could have ended differently today. I believe that the bright woman could have been an e-patient if she had the opportunity. It was not a door she could have opened herself, but she could have walked through it the same as hundreds of women I see on my blog or Facebook every day. None of the doctors viewed my grandmother as a partner in her treatment. Her assertions went unheeded. Doctors and patients who are leading the way today toward patient empowerment are working to change sad endings like that.
So, are e-patients crossing the line?
I don’t believe e-patients want to usurp the role of doctors. They just want to get well – or see their loved one live on. Certainly patients should trust doctors’ judgment, but some doctors got C’s in medical school or are too busy to read the latest study or just have poor listening skills. Collaborating with patients could make them better doctors.
Are e-patients crossing the line? If so there will there be new lines. I think the roles are changing. I wear the e-Patient label proudly – for the time being at least. I don’t care what we are called – as long as we can be partners.
Kelly Young is the author of the Rheumatoid Arthritis Warrior website. Kelly’s e-patient story is on e-patients.net. Her Twitter is @rawarrior.
Note: The link it the Tweet referred to a blog written by Martin Young, MD. I do not believe that Dr. Young meant to imply that patients are crossing lines inappropriately by being e-patients. I take him at his word when he states that he supports e-patients as a concept and as individuals. He has personally been supportive of me and my work as a patient advocate. I have had discussion with him and I do believe that he is honestly concerned for our welfare as patients.
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09/30/2010 | Categories: All things lupus, Life | Tags: Arthritis, Conditions and Diseases, Health, Health care, Medicine, Musculoskeletal Disorders, Rheumatoid, Twitter | Comments Off
Well, once again, here I am expounding the ups and downs of this disease called lupus. The big bad wolf (as it is also known) has taken a big bite out of me lately by keeping me close to my bed and not allowing me to have energy for but a few moments at once. All in all, it has been tough this last five days or so. In keeping with the promise to tell the good with the bad and ugly, I am writing this blog today to share some really good news!
Today was a decent day. I have been out of bed most of the day. Albeit, I have been on the couch for most of it, but I was out of bed! This is a considerable victory for me because a few days ago, it took all my energy just to get to the bathroom. I even babysat my grand Courtney Scarlett for two hours while her mom took my grandson to see the doctor. She is good medicine for me (as are all of my grands). She sat quietly on the couch and watched Dora and Team Umizoomi with Meemaw.
I have found that, contrary to popular belief, children are quite intuitive about adults. In my experience with my grandchildren, I have found that they know when I can or cannot be more active with them. My grandchildren have seen their grandmother in the hospital, taking many pills daily, in bed, on the couch, and basically flat on my back so many times that to them it is a normal thing that I am not able to do much physically with them. On the rare occassions when I am able to do more than my “normal”, they are astonished to see their Meemaw running or jumping or being silly. I have tried not to upset them by having them see me give myself injections of meds, or the pain when I move or walk, etc., but they have learned from infancy that this meemaw cannot do things and they accept me as I am.
It is an amazing thing that children can accept you as you are and love you still, yet most of the world at large seems to not be able to accept you as someone with a disease that doesn’t show. Most try to put you in a category of any of the following: fat/skinny, lazy, attention seeking, hypochondriac, doctor shopping, pill popping, all in your head, making it up, oh please; types of things so they can justify making fun of you or dismissing your illness altogether. We have all had this in some form or another in our disease process. It can even include doctors we are looking up to for help and healing.
I am going offtrack now but on to a rant of mine so here goes…
Ok, here is a tidbit about me. I love to watch the television show “Mystery Diagnosis“. Do you know why? It is because there are many more people out there who have serious and debilitating diseases that have been in the same boat as many of us lupies. They have been to many different doctors, who have told them any number of things and even dismissed them altogether, only to find that one rare gem of a doctor who listened and put it all together.
On this show, I heard a comment from one of the doctors who had helped one of these people to find the correct diagnosis and was treating the patient for it. He made the statement that doctors should know the difference between lumping and sifting. He said doctors should always look at the overall picture (lumping) of the patient and how they present to the doctors versus the opposite by treating each small bit of the disease piece by pice by many different doctors (sifting). For example, if you have lupus, you may have gone to your primary care doctor first, who then referred you to another doctor who treated you for one thing, then sent to another doctor who treated you for another thing, but in the long run, none of them saw the overall picture of the lupus constellation of symptoms. It happens on almost every show on this tv series. It never ceases to amaze me that so many of our doctors out there are just skimming by on the first easy thing they can find to “take care of” the reason for your visits.
I know, there are many good doctors out there. I have several in fact. However, it is by trial and error that I have happened upon them. I really do trust my doctors and the main reason why is that they respect me as a person. If I call or come in to see them, there is a valid reason and they know it. As a former medical professional, I am not some one who is afraid to speak my mind. I have personally “fired” a couple of doctors in my time. I have moved to different states and kept my doctors here in Ohio because I could not find ones who were as qualified and competent as the ones I see here. I have tried to find some, but even if it starts out good, they always seem to let me down by assuming I am some ignorant female who is attention seeking. I have heard that one before. They fail to see that I am sick, truly sick, and only want to be well, or as well as I can be.
The thing I want to stress most emphatically is that we patients are the consumers here. We are the ones who pay the bills. If you are not satisfied with your care, find another doctor. As frustrating as the process may be, in the long run, a doctor who respects you and your feelings is the one you will get the best care from.
One of my doctors that I know as a person as well as a doctor, always gives me hugs when she sees me, either in her office, or in public. She is a nurturing and caring person who believed me when I thought I was losing my mind. She knew that I was not making this stuff up and she kept on until we found out why. We all need and deserve a doctor like this one.
I know, many doctors are overworked and only have a few minutes to give to each patient, however, by being prepared and taking an active role in our medical care, we show them that we are as responsible for our care as they are and a true healer will appreciate us taking that active role. I say beware of those doctors who have a god complex. If they think your ideas or your research or your opinions are of no concern and act like you are silly for any of them, then leave at once and find someone who will take the time and give you their respect. After all, it is YOU who is sick, not them. It can be very enpowering to find where your doctor falls in this equation and enlightening to see how they feel about you and your feelings.
Now what has brought this on, this rant of mine? I read an article that many doctors think patients should not become empowered by researching their diseases and asking questions from this research. Hm… interesting indeed. I think I have made my point on this subject clear. In the meantime, I hope you all find doctors who are genuinely interested in your health and care and give you the respect you deserve. I now will step off my soapbox…
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09/29/2010 | Categories: All things lupus, Life, Medications | Tags: caring, Conditions and Diseases, Connective Tissue, disease, doctors, Health, Health care, lupus, Medicine, Musculoskeletal Disorders, Ohio, physicians, respect | Comments Off