CIDP-Pain or no pain?

CIDP most certainly causes pain!

My daughter Emily has had pain in her ankles, legs, hips, and lower back.

Have you tried Rituxan? There’s a whole thread about it some where here.

Kelly

My 11 y/o son has pain. It seems as though you are stating your pain is new, could you also have fibromyalgia in conjunction with the cidp. Is is nerve pain? Do you take Lyrica, has it helped? Also, I was wondering if you have done the cell cept or imuron route? Good luck to you.
Dawn Kevies mom

Along with all of the other tests, I assume you have done the standard blood tests for inflamation. has arthritis been considered since it seems to be in the joints? You never had pain w/cidp before? The thing that I think stinks about this disease is you never know what is cidp and what is new?
Dawn

Your doctor is WRONG about saying there is no pain with cidp. Every part of my body has hurt at some point since I was diagnosed with cidp in 2000. I have never had multiple treatments, nor am I familiar with Tysabri infusions. You mention that you have tried all that has been mentioned on these threads, but are you getting the right dose of ivig for your body weight and height? And any current immunosuppressants or medications for the nerve pain, ie Neurontin, Lyrica, etc.? Does your doctor indicate that you have progressive or relapse/remit cidp? Best of luck to you. Emma

Fred, how long were you on the rituxan? From this site, many who take it are told it takes at least 6 months to see a difference. Have you tried lyrica? This drug is specifically for nerve pain. FYI, try entering Jenns story (try Jen’s story also) She too exhausted all treatment options and was the first person to receive a stem cell transplant for cidp. She lives not too far from me and the transplant was done at Northwestern University, Chicago. She is doing great now, I spoke with her a few months ago. She has an e-mail that you can ask her questions, and she responds promptly. Good luck.
Dawn Kevies mom

Yes there is pain I had a nerve biopsy and I still have pain from that. But my other pain I am not sure it is related to my CIDP.

I was on Neurontin but switched to Lyrica. How much Neurontin did you take? Some people could take as much as 5400mg a day. But I think the drug company says 3600mg a day I was on 1800 mg a day for the pain from my nerve biopsy. The maximum Lyrica is 600mg a day.

I hope you get some pain meds soon.

Sue

An Article I saved on my computer that mentions pain.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system but often can have central nervous system involvement. The disorder is sometimes called chronic relapsing polyneuropathy. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.
Overview
The pathologic hallmark of the disease is loss of the myelin sheath (the fatty covering that protects nerve fibers) of the peripheral nerves.
Chronic inflammatory demyelinating polyneuropathy is disease believed to be due to immune cells, cells which normally protect the body from foreign infection, but here begin incorrectly attacking the nerves in the body instead. [B]As a result, the affected nerves fail to respond, or respond only weakly, to stimuli causing numbing, tingling, pain, progressive muscle weakness, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations.[/B] The likelihood of progression of the disease is high.
CIDP is under-recognized and under-treated due to its heterogeneous presentation (both clinical and electrophysiological) and the limitations of clinical, serologic, and electrophysiologic diagnostic criteria. Despite these limitations, early diagnosis and treatment is important in preventing irreversible axonal loss and improving functional recovery.[1]
Lack of awareness and treatment of CIDP is also due to limitations of clinical trials. Although there are stringent research criteria for selecting patients to clinical trials, there are no generally agreed-on clinical diagnostic criteria for CIDP due to its different presentations in symptoms and objective data. Application of the present research criteria to routine clinical practice often miss the diagnosis in a majority of patients, and patients are often left untreated despite progression of their disease.[2]
In some cases electrophysiological studies fail to show any evidence of demyelination. Though conventional electrophysiological diagnostic criteria are not met, the patient may still respond to immunomodulatory treatments. In such cases, presence of clinical characteristics suggestive of CIDP are critical, justifying full investigations, including sural nerve biopsy.[3]
Diagnosis
• [B]Clinical neurological examination
Patients usually present with a history of weakness, numbness, tingling, pain and difficulty in walking. They may additionally present with fainting spells while standing up or burning pain in extremities. Some patients may have sudden onset of back pain or neck pain radiating down the extremities, usually diagnosed as radicular pain. These symptoms are usually progressive and may be intermittent.[/B]
On examination the patients may have weakness, and loss of deep tendon reflexes (rarely increased or normal). There may be atrophy (shrinkage) of muscles, fasciculations (twitching) and loss of sensation. Patients may have Multi-Focal Motor neuropathy, as they have no sensory loss.
The patient may present with a single cranial nerve or peripheral nerve dysfunction.
Autonomic system dysfunction can occur; in such a case, the patient would complain of orthostatic dizziness, problems with bowel and bladder functions, and cardiac problems.
Most experts consider the necessary duration of symptoms to be greater than 8 weeks for the diagnosis of CIDP to be made.
• Electrodiagnostics – electromyography (EMG) and nerve conduction study (NCS).
In usual CIDP, the nerve conduction studies show demyelination . These findings include: (a) a reduction in nerve conduction velocities b; (b) the presence of conduction block or abnormal temporal dispersion in at least one motor nerve; (c) prolonged distal latencies in at least two nerves; (d) absent F waves or prolonged minimum F wave latencies in at least two motor nerves. (In some case EMG/NCV can be normal).
• Sural nerve biopsy
Biopsy is considered for those patients in whom the diagnosis is not completely clear, when other causes of neuropathy (eg, hereditary, vasculitic) cannot be excluded, or when profound axonal involvement is observed on EMG.
Treatment
First line treatment for CIDP includes corticosteroids such as prednisone, plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) which may be prescribed alone or in combination with an immunosuppressant drug.
IVIG and plasmapheresis have proven benefit in randomized, double-blind, placebo-controlled trials. Despite less definitive published evidence of efficacy, corticosteroids are considered standard therapies because of their long history of use and cost effectiveness.
Immunosuppressive drugs are often of the cytotoxic (chemotherapy) class, including Rituximab (Rixutan) which targets B Cells, and cyclophosphamide, a drug which reduces the function of the immune system. Ciclosporin has also been used in CIDP but with less frequency as it is a newer approach.[4] Ciclosporin is thought to bind to immunocompetent lymphocytes, especially T-lymphocytes.
Non-cytotoxic immunosuppressive treatments usually include Imuran and Cellcept.
Anti-thymocyte globulin (ATG), an immunosuppressive agent that selectively destroys T lymphocytes is being studied for use in CIDP. Anti-thymocyte globulin is the gamma globulin fraction of antiserum from animals that have been immunized against human thymocytes. It is a polyclonal antibody.
Although chemotherapeutic and immunosuppressive agents have shown to be effective in treating CIDP significant evidence is lacking, mostly due to the heterogeneous nature of the disease in the patient population in addition to the lack of controlled trials.
Physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.
Prognosis
As in Multiple Sclerosis, a similar demylenating condition, it is not possible to predict with certainty how CIDP is going to affect an individual in the future. The pattern of relapses and remissions varies greatly with each patient. A period of relapse can be very disturbing, but many patients make significant recoveries.
If diagnosed early, initiation of early treatment to prevent loss of nerve axons is recommended. However, many individuals are left with residual numbness, weakness, fatigue and other symptoms which can lead to long-term morbidity and diminished quality of life. [5]
It is important to build a good relationship with doctors, both primary care and specialist. Because of the rarity of the illness, many doctors will not have encountered it before. Each case of CIDP is different, and relapses, if they occur, may bring new symptoms and problems. Because of the variability in severity and progression of the disease, doctors will not be able to give a definite prognosis. A period of experimentation with different treatment regimes is likely to be necessary in order to discover the most appropriate treatment regimen for a given patient.

Sue

Fred and Sue, I made a copy of your article Sue, I have a similar one, but yours is very good to keep in my ” cidp” file.

Fred, Had a question-you mentioned not responding to the ivig-has your doctor only tried one brand? They are different for me-one made me worse instead of better. I now get a loading dose of gammagard liquid 45gm X 2 days every two weeks. Everyone is different, but maybe if you had a more frequent dose, that would help. Just another thought…..good luck.:) Emma

[QUOTE=GAVol]I’ve been fighting CICP since 1996 and continue to slowly lose ground. I have had all of the treatment protocals talked about on this site over the years, most with little or no success. Plasma exchange with IV Solumedrol has been the one treatment that seems to slow the progression best over the years, but that now too seems to be losing its effectiveness.
My question is this. Do any of you suffer from rather intense pain? A couple of months ago I began having severe pain in ny hips and back, and sometimes in my shoulders. Have had many sets of x-rays, MRI’s and CT scans, all negative. My doctor insists that CIDP does not cause pain and has had me take a bunch of tests to “rule out” joint or disc, or any thing else. All of the tests have been negative, so I am now on high octane pain killers as a solution.
A second question. Has any one been treatred with Tysabri, the MS drug? I have had three infusions, but see no results. The doctor says it needs six months before he will know if it is helping. During these three months, I have lost a lot of strength and balance, so he is going to try a new strategy at the end of July. He is going to give me one plasma exchange with IV Solumedrol a week before the next Tysabri infusion, then give me one IVIG infusion the day before or the day after the Tysabri. Has anyone else been given multiple treatments within such a short time frame? Thanks in advance for any input.
Fred[/QUOTE]
My husband has cidp. He has lots of pain. I hear him even when he is asleep with the pain. His neuorologist has subscribed neurontonin. He also takes tramidol hydrocodone and just recently one lyrica at night to help with the pain. The dr. that said you do not have pain, has he ever had cidp patients. My husbands pain is very real. The dr is he a neurologist? Even my husbands primary care physician who is an internal medicine dr. knows there is pain with cidp. He sent us to the neurologist for it. The way my husband describes the pain is sharp shooting pains and sometimes like you are being shocked. I think I would find another DR.

Hi there,

Even I can weigh in on this one. I have CIDP. I have pain. The pain worsened for me during remission. I have had spike and jab pains, aching of muscles,
residual inflammation pain. And many other pains associated with muscle and tendon imbalances from the condition. My knee cap hurt when I go up steps.
etc. on and on. I believe the multifocal motor neuropathy has less or no pain, just weakness.

tim

I have had CIDP for over 5 years and never experienced any pain until my lat relapse about a week ago. When I was first diagnosed and up until after my daughter was born 2 years ago I never had numbness either. After her birth I started to experience numbness, This past relapse was VERY painful, also tingling, numbness and a burning sensation. Is it possible for CIDP to change from remitant to progressive? What exactly defines the difference between the two? Until recently (on this fourm) I didn’t even know there was 2 kinds. Thanks for your thoughts!

There was a point there where I had so much pain, right after the turn around that I was taking 6 vicodin per day. This was two more than prescribed but I took em anyway. that helps alot but makes your head really dopey. I now take and like very much. ULTRAM ER/ extended release. I don’t need a nap and don’t get dopey head. I use the max 300mg. It is geat for me because it is excreted throught the kidney. My liver wouldn’t tolerate the ViK’s.

It is a fallacy that cidp can not cause pain. There is another fallacy that says opiates can not treat nerve pain, but that is another discussion.

I have never had any luck with lyrica or neurontin personally. I have tried those at very large doses. Ibuprofen seems to work better than anything non opiate for me.

I thought there had to be another condition going on in the beginning of my disease process because I was in so much pain. I researched fibromyalgia and it seemed to fit, so I asked my neuro. He told me that the pain and symptoms are almost definitely cidp.

Actually, as a child I remember intense muscle pain and nerve pain that my mother attributed to growing pains. Now I am not so sure.

If I were in pain with cidp and my neurologist told me cidp was painless, I would find another neurologist.

I wonder if some peoples pain is/was like mine. I had pain for 13 years. Mostly muscular although also nerve. I also tingle a lot and one neuro mentioned that the tingling is also a sort of pain, although compared to my muscular pain I’d take the tingling pain anyday. My muscular/nerve pain could be highly debilitating. My current neuro believes that based on my symptoms and history that I have had CIDP for 13+ years. My pain was strong enough that Neurontin didn’t do squat for me, neither did any over the counter meds. Muscle relaxants helped in the sense they made me not care if I hurt. I was diagnosed with fibromyalgia in abt 2003 (obviously now we can see that it was just one more misdiagnoses). Since the dxn of Fibro was what I had to work with, I eventually did enough research and decided that I was hypothyroid EVEN though the test results showed otherwise. I found a endo who obviously felt sorry for me and treated me with T3 (majority of endos use synthetic T4 and will not use T3…it is a pharmaceutical political “thing”) as my research showed that T3 worked better than T4 for people with Fibro and those with muscular pain. My pain went away. It is gone. My current neuro has commented that thyroid and CIDP are closely related although I have not questioned him farther on it. Also I have discovered a few studies that shows that thyroid hormone enhances remyelination in chronic inflammatory diseases. I am working with my endo to keep my thyroid hormones at a good place in hopes that it will help me remyelinate and also stay that way.
My point is that yes, you could have pain with CIDP BUT it is also possible that the pain may be due to something other than CIDP.

Kristin, Very interesting about the T3 studies-I am going to check that out. Did you just start googling it? Could use any help you can give me. My initial throid lab was normal and when I saw my neuro a couple weeks ago, I was told I had a combination of relapse-remit/progressive cidp. I have basically had MS-Parkinson’s-Fibro ruled out. At one point my neuro said ” let’s not worry about any new problems.” I take 5400 Neurontin, 100mg Imuran, Darvocet-6 a day(max for Tylenol dose), Xanax as needed and sometimes this helps calm down the shocking, burning, stabbing pain and the itching that makes me want to rip my skin apart-but I still cannot get total refief from the constant pain, burning, numbness-esp the pain-just for one day, would like have no pain!! I have never tried any heavy duty narcotics for the pain, so will discuss that and the thyroid with my docs. And have just started liquid gammagard ivig every two weeks and with premeds of the darvocet-2 and benadryl-2 and motrin800 1/2 way through the infusion, other than fatigue for 2 days, had no headache, now will monitor if it helps-very sensitive to all the water intake-had swollen ankles and a little wheezy the 2nd night of the ivig but both gone by the next morning. I do seem to coast for awhile then a new stress upsets the boat! Just my input Fred and everyone for the day-we are all different and each need different treatments, the trick is to find the right things that work and learn from each other, something new that may help us enhance our current treatment.
I also have started to google and research supplements-I take several but am maybe finding out that I do not take enough and not at the right times of day-pharmacist is also helping me figure this schedule out.
Emma

Fred,

Its late and I havent read all the reply’s………responding to your first post on this thread…… Firstly, I thought your doc to be quite ‘cutting edge’ earlier this year when you discussed the possibility of going on Tysabri – I really dont think many docs would even know that it is used in very very rare cases for CIDP, not only that, as you know, the controversy surrounding it is another story. However, having given you this option I am very upset to hear what he had to say about CIDP and pain – not sure how on earth he could possibly say something like that.:confused:

I really wish you all the best with your continued treatments, finally having taken this step, I pray that you will be rewarded and that it will pay off in the end.

You can comment to your Dr abt T3, but I can guarantee that most Dr’s will scoff. From the late 1800’s until the early 1970’s a natural dessicated porcine thyroid product was used (it includes, to this day, T4 and T3). In the 1970’s, pharmaceutical companies started pushing synthetic T4 (body converts T4 into T3 which is then used). Huge campaigns were waged against the natural stuff and Dr’s switched from the natural to the synthetic. Hence it is extremely difficult to find a “regular” Dr who will prescribe a T3 product as their training generally only entails synthetic T4. Also during this time, treatment changed from treating symptomatically to treating via test ranges. Because of the test ranges people nowadays get roughly 1/3 the amt of thyroid hormone they use to…and nowadays their symptoms aren’t alleviated as they use to be pre1970’s.
Also, Dr’s tend to use the old “normal” ranges for determining who is hypoT even though the ranges changed in 2001. Dr’s are trained on these old ranges and often refuse to treat a person unless their TSH is over 10.
So it is kind of a double whammy…Drs use big name “new” pharmaceutical drugs over proven natural substances (with a track record back into the late 1800’s) because the pharm companies have huge lobbyists. AND even if you are truly HypoT, Drs often won’t treat as they use out of date ranges.
If you want more info, email me or PM me. If you think you are HypoT, I can give you websites to look at for symptoms and treatment.
Kristin