Letter to friends and family

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I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…

Enjoy!

A letter to be shared with friends and family
by Theresa Stoops in Florida

WHAT YOU SHOULD KNOW ABOUT ME

My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,

I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.

==== And always remember I LOVE YOU! ====

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ER Visit

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Well, the neuropathy pain has been getting worse each day. I see the neurologist on the 24th. In the meantime, a friend of mine took  me to the ER because I cannot sleep from the pain. It is not only both feet now, it has also moved into my legs!

For the past several days I have gone to bed and the pain wakes me back up. It is a vicious cycle of pain and no sleep. Frustrating.

So, I headed to my ER. They actually got me right in and checked me out. Decided no blood clots were present. It is just the pain of the neuropathy.

Neuropathy is usually associated with those who have diabetes. A little known fact is that when lupus starts affecting your brain, it can cause your nerves to go haywire, just like in diabetes patients. It causes a pins and needles type of pain. It causes acute pain and can be really horrible. I have posted previously on this subject of the connection from lupus.

Sorry if this post is a little disjointed. The ER doctor gave me a healthy dose of morphine along with a triple dose of neurontin. The pain is still there, just not as bad. I have some relief finally. Now, on the 24th me and my neurologist are going to have a major pow wow and get this pain under control. I cannot live like this, in constant pain. I totally understand why some of our fellow lupus warriors have committed suicide. When you have this pain all the time, you get to wondering why should you keep trying. Been there. Now, if this will give me a little break from the pain, maybe I can get back on track and feeling better. Ok, a girl can dream at least.

Seriously?

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I would like to say up front that I think my team of doctors is a pretty good team overall. They take good care of me each, in their own way or specialty. I am thankful to have them. However, I do believe that there are times I would like to fire the lot of them and start all over again. Why you ask? Let me explain…

I have been experiencing some of the most horrible pain of neuropathy I have ever had lately. Crying, throbbing, nasty mean pain. Ok, so I decided to do what I am supposed to do, I called my neurologist. I called his office where, I find, the earliest they can get me in is July 24th. Seriously! Despite me telling them the pain I am in and all. So, I take it. I asked them if they could give me something for the pain until the appointment. They suggested I call my family doc and see them to get something in the interim. 

So, I call my family doctor. I ask to have an appointment and explain why I need to see her. They tell me they will call me back after talking to the doctor. I get a phone call back a while later and I am told that since I have a neurologist who treats my neuropathy, I should see him for the pain. Seriously? I just explained that he could not see me for almost a month! 

I did ask at both practices what I should do about the pain. Both suggested I go to the ER and I could get some temporary relief there. Boggles my mind!

I am trying to go about this the right way and I basically got the run around. In the meantime, the pain is still there, making me hurt more each day. Let me tell you why I do not go to the ER though. You see, if I go, it always goes like this… I am seen, given a shot or something then sent home. I am treated like a whiner, a silly woman who is drug seeking for pain killers. I just wish once, these same people had drop of the pain I live in daily and could see just how painful it is. A little empathy would go a long way.

I guess what makes me really boiling mad is that when someone in TRUE pain presents to the medical establishment, they get no relief for fear of  being accused of supplying medications to drug addicts. However, the true drug addicts can get whatever their heart desires at any time, legally or not legally. It is the honest folks who are paying the price.

Makes me think that I should find my neighborhood drug dealer for relief. Oh wait! If I do that, then I am a criminal and can go to jail. On the other hand, in jail I get free medical care and drugs. Wow! I understand why people with chronic and incurable pain get so angry! Is this wrong? Yes, because the really sick people are the ones who suffer because of the drug seekers who abuse the medications that we, the truly ill need. 

Ok, getting off my soapbox now. Just had to vent. Thanks for bearing with me!

Fibromyalgia Basics Overview

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Since the beast of fibromyalgia has reared its ugly head in my body recently, I decided to review the basic facts of fibromyalgia (fm). I always feel that knowledge is more powerful than ignorance so in my quest for the information, I found this website which has a great description of the basic information of fm. I got this from the website www.prohealth.com. You can find more information there. Here is their article:

What is Fibromyalgia?


Fibromyalgia (FM) is a chronic pain disorder characterized by widespread pain, fatigue and sleep disturbances. It was originally thought to be a musculoskeletal disorder since most of the pain was felt in the muscles and other soft tissues. However, recent research and the advancement of brain-imaging technology is revealing that fibromyalgia is actually a disorder of the central nervous system, which causes abnormal pain processing and results in pain amplification.

Fibromyalgia Symptoms


The three primary symptoms that are common to almost everyone with fibromyalgia are pain, fatigue and sleep disorders.

Pain: Pain is usually the most prominent symptom of fibromyalgia. FM pain is chronic and widespread, affecting all four quadrants of the body, although not necessarily at the same time. Its intensity may range from mild to profound. FM pain tends to migrate, sometimes affecting one part of the body and sometimes another. Patients also report that their bodies ache all over, much like having the flu. In addition to the aching, FM pain has been described by different people as burning, throbbing, sharp, stabbing or shooting pain. Most people with FM also complain of feeling stiff and achy when they wake up.

Fatigue: While everyone knows what it feels like to be tired, the fatigue experienced by fibromyalgia patients is so much more. It’s a pervasive, all-encompassing exhaustion that can interfere with even the most basic and simple daily activities. Another feature of FM fatigue is that it is not relieved by rest.

Sleep Disorders: Most people with fibromyalgia have problems with sleep. They report having difficulty getting to sleep, waking up frequently throughout the night, and not feeling refreshed when they get up in the morning. Studies have shown that FM patients spend little to no time in deep, stage four sleep because their sleep is repeatedly interrupted by bursts of awake-like brain activity. Since deep sleep is the time during which the body replenishes itself, fibromyalgia patients are not able to get the restorative sleep their bodies need. In turn, this lack of deep sleep can result in making their pain and fatigue worse.

Other Symptoms: Most fibromyalgia patients also report a number of other symptoms and overlapping conditions, which may include allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.

(For more information about specific symptoms, see “Common Symptoms“)

Who is at Risk for Developing Fibromyalgia?


Adult women appear to be at greater risk for developing fibromyalgia than men or children, however, it can affect all ages and both sexes. Historically, 75 to 90 percent of people diagnosed with FM have been women, but new information may eventually change those figures.

FM experts are finding that men often have fewer than the traditional 11 tender points required for diagnosis, yet meet all the other criteria for fibromyalgia. And what was once thought to be “growing pains” in children may turn out to be a previously unrecognized form of FM.

Although fibromyalgia will probably still occur most frequently in adult women, we may soon discover it affects significantly more men and children than once thought.

Another risk factor may be family history, as there is growing evidence of a genetic component in fibromyalgia. If someone in your family has FM, you may be at greater risk of developing it yourself.

How is Fibromyalgia Diagnosed?


Fibromyalgia (FM) should be diagnosed by a qualified physician who is familiar with the illness and has experience diagnosing and treating it. In 1990, the American College of Rheumatology established the research criteria for fibromyalgia, which are now the criteria most commonly used to diagnose it.

For a diagnosis of fibromyalgia, both of the following must be present:

  • A history of widespread pain in all four quadrants of the body for a minimum duration of three months, and
  • Pain in at least 11 of 18 designated tender points when four kilograms (about 10 pounds) of pressure are applied.

According to the American College of Rheumatology fibromyalgia is not a diagnosis of exclusion. However, there are several other illnesses that have similar symptoms, so it is important that the doctor test for certain comorbid conditions as well. Which particular tests may be necessary will depend upon the individual patient’s symptoms and medical history.

Fibromyalgia Causes


In the past few years scientists have made tremendous progress unraveling the mysteries of fibromyalgia. Although there is still some disagreement as to the cause of FM, there is little disagreement that its onset is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress.

Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.

One popular theory as to the cause of fibromyalgia is that a trauma or significant stressor turns on an individual’s “fight-or-flight” response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off.

But when the stress becomes prolonged, the fight-or-flight response gets stuck in the “on” position and the person’s body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.

Regardless of what initially triggers the illness, research has shown that fibromyalgia patients have very real physical abnormalities, including:

  • Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems fibromyalgia patients experience.
  • High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
  • Low levels of nerve growth factor.
  • Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
  • Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
  • Low levels of phosphocreatine and adenosine, muscle-cell chemicals.

Treatment


Since the cause of fibromyalgia remains a mystery, most treatment is aimed at relieving symptoms and improving quality of life. Most patients find that a multi-disciplined approach using a combination of  prescription medications, alternative/complementary therapies, gentle exercise and lifestyle adaptations seems to work best.

Unfortunately, finding which medications, therapies, etc. work best for a particular patient is generally a matter of trial and error. What helps one patient may not help another. It’s important that the patient, doctor and other healthcare professionals work together as a team to develop an individualized treatment plan.

(For more information about different treatment options, see”Treatment Modalities.” )

Choosing a Doctor


If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding fibromyalgia. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with fibromyalgia and able to help you.

In the past, rheumatologists were the specialists who diagnosed and treated fibromyalgia. However, since research is indicating that FM is most likely a central nervous system problem, some rheumatologists are no longer taking FM patients. Check with the rheumatologists in your area to see if they will treat fibromyalgia. Logically, if FM is a central nervous system issue, neurologists would be the specialists that should treat it. Unfortunately, most neurologists are reluctant to add fibromyalgia to their practices. A few, however, have jumped on board. Again, check with the neurologists in your area to see if they will treat FM.

If your doctor is not knowledgeable about FM and is not able to recommend someone, your best resource for finding a doctor who is knowledgeable about fibromyalgia in your area is probably a local support group. (Check ProHealth’s Support Group Listing to find a group near you. ) FM message boards are also a good place to ask if anyone knows of a good doctor in your area. (Visit ProHealth’s FM message board.)

Talking with family and friends may shed some light on your search as well. Hearing of a physician with compassion, one who spends time with patients and listens, goes far when making a decision. Overall, you want to find a physician who is committed to learning as much as she can about the condition so she can provide you with the best possible care.

Do a little research on the doctors you are considering. First, check with your insurance carrier to find out which health care providers are covered by your plan. If there aren’t any suitable doctors in your plan, inquire about out-of-network coverage and charges. Next, check out the doctor’s medical credentials and whether there have been any malpractice suits or disciplinary actions against her. Below are just a few resources to help you begin your research:

  • American Medical Association’s Doctor Finder includes physician profiling information such as medical school, training and specialty.
  • The American Board of Medical Specialties will tell you if your doctor is board certified and in what specialties. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means the training, but not the test, has been completed.
  • Contact your state’s Board of Medical Examiners to find out about any history of malpractice suits.
  • Find out how other patients feel about a doctor you are considering. There are several Web sites, like RateMDs.com where patients rate their doctors. This particular site covers doctors and dentists in the US, Canada, the UK, Australia, New Zealand and India.

As with any chronic illness, navigating your way within the medical world will require you to be your own advocate. This means being proactive about your care, staying informed, and being organized about your needs during each appointment. This is not an easy road, and balancing the medical, insurance and care aspects of your health is going to require clarity and work on your part.

Related Conditions


Seldom is fibromyalgia a solitary illness. Most FM patients have one or more comorbid (related) conditions. Which came first is one of those chicken and egg questions.

Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes.  Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See “Are Fibromyalgia and Other Chronic Conditions Associated?” for more information on Central Sensitivity Syndrome.)

Some of the related conditions that fibromyalgia patients may have include:

  • Allergies
  • Migraine disease
  • Restless legs syndrome
  • ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
  • Irritable bowel syndrome
  • Lupus
  • Multiple sclerosis
  • Hypothyroidism
  • Temporomandibular joint disorder (TMJ)
  • Chiari malformation
  • Intermittent cervical cord compression
  • Cervical stenosis
  • Polymyalgia rheumatica
  • Sleep apnea
  • Raynaud’s syndrome
  • Sjogren’s disease
  • Myofascial pain syndrome
  • Depression
  • Osteoporosis
  • Multiple chemical sensitivity
  • Osteoarthritis
  • Rheumatoid arthritis
  • Interstitial Cystitis
  • Gulf War Syndrome

Personally

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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.

Why I Walk

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To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…

I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.

I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.

I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.

I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!

I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.

Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to

www.lfa.org and learn more about it.

If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.

On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.

Stupid wolf!

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Have you ever wished to just once wake up and feel normal? I do and lately it has been hard. My joints are all hurting really bad. My migraines are clustering again. Now, on top of all the regular gripes, it seems my left lung or kidney is now hurting really bad. I am not sure which it is, it could be either causing the severe pain, however I suspect it to be the lung because it hurts when I inhale air. I have one more issue but do not want to share it until I know more.

Have you ever wished the pain would go away? I have. More so lately than before. I think I am in a new threshold of pain and it frightens me some. I mean, I am not afraid die, quite the contrary. I just hate living with all this pain. Yeah, I know, pain makes us stronger, but I am really tired of being strong, I need to relax and enjoy life instead of sitting on the sidelines watching life go by.

Ok, I might be a little depressed as well. Wouldn’t you be depressed if you woke up to painful joints and swollen lymph nodes and a myriad of other stuff? Never ever take for granted good health if you have it. I pray no one has to feel this way. It is amazing how much you have to suffer just to get by. Well, I am not going to take it and the big bad wolf can just go hang. I am bigger than the pain, although it is pretty bad right now. I will get through this. I’d better.

If the pain persists, I will go to the ER. Simple plan. Hope I don’t need it!