Hello once again!
As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.
I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!
Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!
So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.
He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.
I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.
A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.
I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.
Hello everyone! I sincerely hope that you have all had a great week! Our weather here in Ohio has been beautiful! Sadly, I did not get to enjoy it.
I had to prep for a colonoscopy which meant that I was tied to the toilet for the weekend. Yay me! I am glad that I had it though. It was on Monday morning I had it. I knew something was different when I woke up and discovered it took a lot longer than normal. I was also hurting a little. I have had lots of these since 2001 so I know the drill.
Anyway, I found that they had removed three small 2 mm polyps and one big 3 cm polyp. That big one was the worry. They have all been sent for biopsy and I find the results on Monday. Ok, whew!! Made it!!
Then, on Monday evening I began to hurt in the region of the big polyp removal. I went to sleep eventually but woke with more pain. I kept pretending to myself ( something I am quite good at) that it would go away. Instead, it got worse until finally I called the doctor at 4:30 pm. He told me to go to the ER and have a ct scan. Easy enough, right? Wrong!
I got there at 5:30 pm (driving myself, don’t ask). After triage and IV port in, bloodwork was sent off and they finally got a room for me. I went back and got dressed in hospital garb and waited. I saw the doctor around 8 pm and he ordered morphine for pain and zofran for nausea. Now I was scrambling texting trying to find a ride for later when I left. Remember, I drove myself ( again, don’t ask).
Finally I got my ct scan. The doctor returned and said my lymph nodes were inflamed around the area the polyp was removed. Great! The good news was my colon wasn’t perforated!! Ok, lymph nodes, sounds like lupus is acting up to me but what do I know?
I was then told I was being admitted. What!? Oh just great! So, now I am texting saying I am not needing a ride after all. Around 1 am I am taken to a room and after another hour of admission process I am finally able to rest a little bit. I slept for an hour before the lab came for blood again. Next was the tech for vitals. The nurse was next with meds. So, no sleep.
I must have seen seven different doctors on Wednesday morning. Finally one came in and said I had “alongmedicalnameicantrecall” syndrome that a few people get after a colonoscopy. Figures. This was the first time I ever had anything like this!
I was told if I could eat lunch, I could go home. Yippee!!! Well, after lunch, another doctor came in and said I would stay one more night just to be safe. Oh no!!! After she consulted with the other doctor, it was decided it was up to me! I dressed quickly and asked for my paperwork. Ah! The sweet smell of success!! I was breaking out!! Then, oops!!!!
They asked how I was getting home. Thankfully I had not had pain meds that day so I told them I was driving myself. It almost was an issue but in the end, they walked me all the way to my car and I was out of there!!!
I stopped and got my meds on the way home them got home. Took my meds and sat in my recliner with the intent of watching a few shows that were on the dvr. The joke was on me! Once I sat back my kitty jumped into my lap and I woke up at 8 this morning! Now, that’s not so bad but I went into the bedroom and promptly fell back to sleep. I finally woke up at 3 pm! I guess I was sleepy!!!
So, I must apologize for being MIA but it wasn’t intended. To beat it all, the weather today is cold rain!! All those beautiful days and I was out. Crap. Oh well, at least I am home now!
Please dear friends I would like to ask for prayers that my biopsy comes back ok. I am a little worried. I am not going to obsess but it is there until they give the all clear.
Hopefully I will steer clear of hospitals for a long time now. Well, one can hope anyway! Hope you are all enjoying spring wherever you live! ~Jen
When you have an autoimmune disease like lupus and others, you need to be travel savvy when taking trips. How do I know this? Well, I like to travel and find that proper planning and rest can make the world of difference to a lupus body.
I have found that when planning a trip, first consider how you are traveling. If by car, then the rules are different than from airplane. So, in an attempt to help others, I thought I would share some of my “tips” for traveling with an autoimmune disease like lupus.
No matter your mode of travel, the first rule is always the same, get plenty of rest before you go anywhere. Take your time when planning your trip and be sure to include this rule.
Do not “wing it”. Properly planning your trip and itinerary can make the most ambitious trip more manageable. I start by listing what I plan to take with me, as in clothing and accessories, and from that branch out into what I want to do while on my trip and places and/or people I want to see. This helps because by breaking it down to smaller components, you do not get overwhelmed and overdo it. It is important to do this, otherwise, you could be setting yourself up to a disasterous trip and full on flare! Simply taking it in bite size pieces before you leave can make all the difference in the world.
Rest. Plan rest stops for you and your body so you can do all the things you really want to do. For example, when I travel by car, I always plan on taking a day off the next day to let my body rest. If I push myself, then I get into a world of hurt. It is vitally important that we rest often and take our time. If traveling by plane, you can rest on the plane, especially if it is a long flight.
No matter how you travel, make sure you stretch your legs at regular intervals, and as often as you need to. This will prevent not only blood clots from forming in your legs, but also allow for your muscles to not cramp and for proper blood flow and joint movement. When you sit too long in one position, your joints tend to stiffen up and become painful. When by car, I try to stop once every two hours, no longer than that, and get out and walk a bit. It truly does help. In a plane, you can walk up the aisle and back down as you go to the restroom or to the snack area. If you are on a long flight it is important to do this for the reasons mentioned above.
Keep your meds close to you. If traveling by car, keep them in the interior of the car if possible and if by plane, keep them in your carry on luggage. This insures that you will not get separated from your vital medications. I never put my meds in checked baggage, ever! I always try to keep a small bag in the interior of the car to so that if I need something, it is in easy reach and not buried under a mound of luggage in the trunk of the car.
I hope you have found this to be helpful. I have learned these things by trial and error. I love to travel. I love to see new things. These hints have helped me to maintain a semblance of less pain as I see and learn new things in my travels.
To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:
A tremor is an involuntary, somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.
This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.
Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.
I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.
I saw my new gastroenterologist the other day. Since I have been having so many issues with my colon, I knew I needed to see someone so my new family doctor referred me to this new doctor. He was awesome! He had us schedule a colonoscopy for the first part of April, hopefully by then these issues will be resolved enough to do it.
I feel so much better after seeing this doctor and I am so glad to add him to my team of doctors! My appointment was for 2:30 pm, I got there at 2:25. I was checked in and filling out forms and then called back to the room. The nurse was thorough and very nice. The doctor was amazing! Afterwards, I paid, got my instructions, and left. It was now 3:00. WOW!!! I love how these doctors value my time as much as their own! I like this new trend in medicine.
So, one major thing down, a few more to go. I still have eto see my new gynecologist for checking out that mass on my ovary. I am seeing my neurologist Friday. I see my surgeon next Thursday and the the following Monday, my rheumatologist. My ducks are lining up quite nicely.
Thank you all for your continued good wishes and thoughts and prayers. Things are on the upswing now! I am being proactive and hope things turn out well. I have a lot more living to do, a new grandbaby coming, and plans to do much more!
Well I am sorry to report that my infection never went away. A part of it lingered on from my recent hospitalization despite all the antibiotics I have taken. The pain was pretty bad so off to the ER again.
After tests, iv’s and a ct scan they discovered that this infection had not left. However, it was not as bad as before so wonder of wonders they sent me home with five new prescriptions! Hooray!!! I packed a bag in case they admitted me but so happy I didn’t have to use it.
One more thing… I asked about my blood count and I am now 12.1! 12 is the lowest number for not being considered anemic. I am working on improving that by eating protein. That is good news indeed!!
So, I am home, in my recliner, my kitty is sprawled out across my lap, and all is right for me. Hopefully, after two more antibiotics, this thing will be gone once and for all. Here’s hoping!!!
It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.
As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.
My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!
Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.
I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.
So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.
||Phase 1 – TENSION BUILDING:
Tension increases, breakdown of communication, victim feels need to placate the abuser.
|Phase 4 – CALM:
Incident is “forgotten”, no abuse is taking place.
||Phase 2 – INCIDENT:
Verbal and emotional abuse. Anger, blaming, arguing. Threats. Intimidation.
||Phase 3 – RECONCILIATION:
Abuser apologizes, gives excuses, blames the victim, denies the abuse occurred, or says it wasn’t as bad as the victim claims.
The original three-phase Cycle of Violence theory was developed by Dr. Lenore Walker
The fourth phase was added by unknown persons in shelter handouts, pamphlets etc.
From the webpage http://www.lilaclane.com/relationships/emotional-abuse/
COMMON CHARACTERISTICS OF ABUSERS
* He was verbally abused as a child, or witnessed it in his own family.
* He has an explosive temper, triggered by minor frustrations and arguments.
* Abusers are extremely possessive and jealous. They experience an intense desire to control their mates.
* His sense of masculinity depends on the woman’s dependency upon him. He feels like a man only if his partner is totally submissive and dependent on him.
* Abusers often have superficial relationships with other people. Their primary, if not exclusive, relationship is with their wife/girlfriend.
* He has low self-esteem.
* He has rigid expectations of marriage (or partnership) and will not compromise. He expects her to behave according to his expectations of what a wife should be like; often the way his parents’ marriage was, or its opposite. He demands that she change to accommodate his expectations.
* He has a great capacity for self-deception. He projects the blame for his relationship difficulties onto his partner. He would not be drunk if she didn’t nag him so much. He wouldn’t get angry if only she would do what she’s supposed to do. He denies the need for counseling because there’s nothing wrong with him. Or he agrees to get counseling and then avoids it or makes excuses to not follow through. He might not want her to get counseling because, he reasons, she wouldn’t have any problems if she only turned to him.
* He may be described as having a dual personality — he is either charming or exceptionally cruel. He is selfish or generous depending on his mood.
* A major characteristic of abusers is their capacity to deceive others. He can be cool, calm, charming and convincing: a con man.
* The mate is usually a symbol. The abuser doesn’t relate to his partner as a person in her own right, but as a symbol of a significant other. This is especially true when he’s angry. He assumes that she is thinking, feeling, or acting like that significant other — often his mother.
I got these questions at http://www.lilaclane.com/relationships/emotional-abuse
An abusive partner will railroad discussions, so that you don’t have time to think about what’s right and what’s wrong in their behavior.
Take a moment to consider these questions. Your partner might have behaved as though these things were okay, even though it’s obvious that they aren’t okay…:
Do you feel that you can’t discuss with your partner what is bothering you?
Does your partner frequently criticize you, humiliate you, or undermine your self-esteem?
Does your partner ridicule you for expressing yourself?
Does your partner isolate you from friends, family or groups?
Does your partner limit your access to work, money or material resources?
Has your partner ever stolen from you? Or run up debts for you to handle?
Does your relationship swing back and forth between a lot of emotional distance and being very close?
Have you ever felt obligated to have sex, just to avoid an argument about it?
Do you sometimes feel trapped in the relationship?
Has your partner ever thrown away your belongings, destroyed objects or threatened pets?
Are you afraid of your partner?
I am writing this post while I have so many things on my plate. I need to get the house in order for the upcoming winter, and from what I have heard, this house is horrible for drafts and cold. A previous occupant told me she would get up in the morning and open the oven, turn it on, then lay back down until it heated it up enough for her to get dressed for work. Yikes! Now, that being said, I do not truly know what it will be like but hey, gotta place to live so I cannot complain. I will get a couple of those little heaters to help out. I am also thinking of getting hay bales to put around the exterior ground level of the house to help with insulation. You see, the house is kind of rotting around the ground level from mold and rot due to not having the proper spouting leading the water away from the foundation. Yes, as you can tell, this is an old house. Ah well, I will deal with it all in my time frame.
Now, another thing on my plate is getting my finances in order. I have worked out a budget that, while tight, is going to get me what I need. No wants but needs. I can deal with it. The peace is wonderful and worth it. Just going to be living simply for the next bit but in the end I will be debt free and able to live better on my own.
On the negative side of things, my lymph nodes are swollen in my neck and I have blisters in my mouth along with severe pain in the joints. This is otherwise known as a major flare beginning. My rheumy is calling me in steroids to help combat this before it goes any further. I hope it helps. Daggone it though, I just lost all that weight and now will most likely gain some of it back. Well, I guess that is better than the pains of lupus.
I have been getting to see my kinds and grandkids so much more lately and that is a blessing. I admit that it has been so wonderful seeing them more often and getting to be a major part in their lives.
I am still dealing with my grief on losing my doggie Savannah. She is missed so much and yet knowing she is not in pain anymore makes the blow a little easier to accept. It will get easier over time but right now it still is a bit raw.
I will be posting my big shopping adventure tomorrow and show you all my freebies I got!!! Retail therapy does help me out…lol…
Hope you all are pain free and happy and enjoying the change of seasons in your area!
I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
Part 9 of this series, thank you for indulging me int his. From the Mayo Clinic website
Lifestyle and Home Remedies
Lifestyle and home remedies
By Mayo Clinic staff
The following suggestions can help you manage peripheral neuropathy:
- Take care of your feet, especially if you have diabetes. Check your feet daily for signs of blisters, cuts or calluses. Tight shoes and socks can worsen pain and tingling and may lead to sores that won’t heal. Wear soft, loose cotton socks and padded shoes. You can use a semicircular hoop, which is available in medical supply stores, to keep bedcovers off hot or sensitive feet.
- Exercise. Ask your doctor about an exercise routine that’s right for you. Regular exercise may reduce neuropathy pain and can help control blood sugar levels.
- Quit smoking. Cigarette smoking can affect circulation, increasing the risk of foot problems and possibly amputation.
- Eat healthy meals. If you’re at high risk of neuropathy or have a chronic medical condition, healthy eating is especially important to ensure that you get essential vitamins and minerals. Emphasize low-fat meats and dairy products and include lots of fruits, vegetables and whole grains in your diet. Drink alcohol in moderation, if at all.
- Massage your hands and feet, or have someone massage them for you. Massage helps improve circulation, stimulates nerves and may temporarily relieve pain.
- Avoid prolonged pressure. Don’t keep your knees crossed or lean on your elbows for long periods of time. Doing so may cause new nerve damage.
I just posted this as my facebook status because, well, I heard there are those who are questioning my doctors in the care they are giving me. So, in the spirit of letting them know how I feel, here is my retort:
Ok, this is for the people who think I should not take so many medications and that the medications are the reason I am so sick, well, think again! When you get a medical degree and can tell others what they should take, then I will listen to you. Until then, I prefer my specialists like a neurologist, an opthalmologist, a rheumatologist, and others who form what I call my “team of doctors”. Yes, they all share what is going on with my disease. Yes, they all know what meds I am on. And guess what? They all agree to the care I am receiving. So, if you want to discuss my disease and care, please have the decency to call me and get the facts first before judging me! Thanks!
Seriously, that is what I said. What do you think? Too hard on them or too easy?
Part 8 in this series from the Mayo Clinic
Treatment and Drugs
Treatments and drugs
By Mayo Clinic staff
One goal of treatment is to manage the condition causing your neuropathy. If the underlying cause is corrected, the neuropathy often improves on its own. Another goal of treatment is to relieve the painful symptoms.
Many types of medications can be used to relieve the pain of peripheral neuropathy, including:
- Pain relievers. Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
- Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
- Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
- Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
- Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.
Part 7 pf this series from the Mayo Clinic website
Tests and Diagnosis
Tests and diagnosis
By Mayo Clinic staff
Peripheral neuropathy isn’t a single disease, but rather a symptom with many potential causes. For that reason it can be difficult to diagnose. Your doctor will need to determine where the nerve damage is and what’s causing it.
Diagnosis usually requires:
- A full medical history. This includes your symptoms, your lifestyle, exposure to toxins, drinking habits and a family history of neurological disease.
- Neurological exam. This may include checking your tendon reflexes, your muscle strength and tone, your ability to feel certain sensations, and your posture and coordination.
- Physical exam. Your doctor will likely do a complete physical exam.
Your doctor may order tests, including:
- Blood tests. These measure various levels, such as vitamin and blood sugar levels; and bodily functions, such as thyroid, liver and kidney.
- Imaging tests. Your doctor may request a CT scan or MRI to look for herniated disks, tumors or other abnormalities.
- Nerve function tests. These may include electromyography — which reads electrical activity in your muscles to determine if your weakness is caused by muscle damage or nerve damage — and nerve conduction studies — which assess how your nerves and muscles respond to small electrical stimuli, generated by a probe and measured by an electrode placed along the nerve’s pathway.
- Nerve biopsy. Your doctor may recommend this procedure to try to determine what’s damaging your nerves. A small portion of a nerve is removed and examined for abnormalities.
Part 6 of this series from the Mayo Clinic website.
Preparing for Your Appointment
Preparing for your appointment
By Mayo Clinic staff
You’re likely to start by seeing your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in nervous system disorders (neurologist).
To make the most of your appointment time, it’s good to arrive prepared. Here’s some information to help you get ready for your appointment, and to know what to expect from your doctor.
What you can do
- Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Make a list of all medications, vitamins and supplements you’re taking.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all of the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Preparing a list of questions can help you make the most of your time with your doctor. For peripheral neuropathy, some basic questions to ask your doctor include:
- What’s the most likely cause of my symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need? Do these tests require any special preparation?
- Is this condition temporary or long lasting?
- What treatments are available, and which do you recommend?
- What types of side effects can I expect from treatment?
- Are there alternatives to the primary approach that you’re suggesting?
- I have other health conditions. How can I best manage them together?
- Do I need to restrict any activities?
- Is there a generic alternative to the medicine you’re prescribing?
- Are there brochures or other printed material I can take home with me? What websites do you recommend?
Don’t hesitate to ask other questions that occur to you.
What to expect from your doctor
Your doctor is likely to ask you a number of questions, such as:
- Do you have any underlying health conditions, such as diabetes or kidney disease?
- When did you begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- Does anything seem to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
Part 5 of the series on neuropathy from the Mayo Clinic website.
By Mayo Clinic staff
Complications of peripheral neuropathy may include:
- Reduced feeling. Because parts of your body may be numb, you may be less likely to feel temperature changes or pain. This can make you more susceptible to burns or skin trauma.
- Infection. Make sure to check your feet, as well as any other areas lacking usual sensation, regularly so that you can treat minor injuries before they become infected. This is especially important for people with diabetes, who tend to heal more slowly.
Part 4 of this series from the Mayo Clinic website.
By Mayo Clinic staff
Peripheral neuropathy risk factors include:
- Diabetes, especially if your sugar levels are poorly controlled
- Alcohol abuse
- Vitamin deficiencies, particularly B vitamins
- Infections, such as Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS
- Autoimmune diseases, such as rheumatoid arthritis and lupus, in which your immune system attacks your own tissues
- Kidney, liver or thyroid disorders
- Exposure to toxins
- Repetitive physical stress, possibly from occupational activities
Part 3 of the series on this subject from the Mayo Clinic website.
By Mayo Clinic staff
It’s not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:
- Alcoholism. Many alcoholics develop peripheral neuropathy because they make poor dietary choices, leading to vitamin deficiencies.
- Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
- Diabetes. When damage occurs to several nerves, the cause frequently is diabetes. At least half of all people with diabetes develop some type of neuropathy.
- Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
- Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
- Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
- Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position or repeating a motion many times — such as typing.
- Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
- Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
- Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.
Continuation of the series on periphreal neuropathy from the Mayo Clinic.
By Mayo Clinic staff
The nerves of your peripheral nervous system send information from your brain and spinal cord (central nervous system) to all other parts of your body and back again. Nerves that may be affected by peripheral neuropathy include:
- Sensory nerves that receive sensations such as heat, pain or touch
- Motor nerves that control how your muscles move
- Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder function
Most commonly, peripheral neuropathy starts in the longest nerves — the ones that reach to your toes. Symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:
- Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
- Burning pain
- Sharp, jabbing or electric-like pain
- Extreme sensitivity to touch, even light touch
- Lack of coordination
- Muscle weakness or paralysis if motor nerves are affected
- Bowel or bladder problems if autonomic nerves are affected
Peripheral neuropathy may affect one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy).
When to see a doctor
Seek medical care right away if you notice any unusual tingling, weakness or pain in your hands or feet. Early diagnosis and treatment offers the best chance for controlling your symptoms and preventing further damage to your peripheral nerves. If your symptoms interfere with your sleep or you feel depressed, your doctor or pain specialist may be able to suggest treatments that can help.
Well, in light of the progression of my neuropathy, I decided to check out more information. I went to the Mayo Clinic website and found this information. I have re-read the information in light of the new developments in my case. As with any portion of our lupus, or autoimmune journeys always talk to your doctor before starting any new treatments.
From Mayo Clinic website:
By Mayo Clinic staff
Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.
This is a reblog from another blogging friend of mine. Hope to inform others about these types of people.
“…defining the key behaviors of an abusive man and the characteristics of the relationship he creates:
- Give and take in the relationship goes grossly out of whack. You end up giving way more than your share, while your partner is taking way more than his.
- You pay a high price for bringing up certain subjects, so that you start to feel, “I just can’t talk to him about that.”
- He tells you that things he has done to you are your own fault.
- You get punished for standing up to him about certain things. If you don’t back down when he reaches his limit, he will get you back for it by ripping you apart verbally, threatening you, scaring you, hurting you physically, or intentionally ruining your day. The bottom line is, if he doesn’t get his way about something that is important to him, he makes sure to make you miserable.
- You feel more and more controlled and devalued by him over time.
- He hurts you for being hurt by him. In other words, if you tell him how you have been affected by his destructive behavior, or he notices those effects himself, he uses those effects to ridicule you or to do you more harm in other ways.
- He refuses to accept responsibility for his own actions.
The passive aggressive man does these abusive things covertly, subtly, in ways that seem completely justifiable.
Got this from a great board for support. It is from the UK Lupus support board on myspace. Awesome read!
“Toxic Fatigue of Lupus”
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
The toxic fatigue of lupus also forces you to make major decisions. Will you make yourself a cup of tea, which means dunking that heavy teabag, or settle for a glass of water – and how many ice cubes can you use without making the glass too heavy?
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.