fibromyalgia and CIDP same issue??

    • Anonymous
      November 8, 2008 at 4:15 am

      Has anyone seen this information about the link between fibromyalgia and CIDP?
      Is just my situation and maybe others.
      For reumatologist I have fibro, and for the neuro I have CIDP.
      Is incredible how in medicine they have so broad differences between them.
      I´m an electrical engineer, and I can see no way how when can differ in diagnostic and solutioon with a mechanical or other engineer branch when we study an issue.

    • Anonymous
      November 8, 2008 at 11:21 am

      I was diagnosed with Fibro but when I lost the ability to walk and move the diagnoses was changed to CIDP. I read that study a while ago.

      For many diseases, the symptoms are the same. I have also read that fibro mimics lymes and a few other things. The symptoms that I hear on this forum for CIDP match up pretty much the same as those on my thyroid lists. …extreme muscle weakness (such as unable to climb stairs, stand on toes, ,run, etc), fatigue, tingling/nerve pain, numbness, little to no reflexes, etc. The majority of people on those thyroid lists fix their symptoms, but not with what people on this list use.

      I did get rid of my widespread pain (that I had for 13 years) by taking T3. One of the theories of fibro is that it is a undiagnosed thyroid problem. There are tons of fibro patients now taking iodine and finding major pain relief. That is great news as it is helping to show that for many fibro patients that it may indeed be a thyroid issue, the bad part is that no one would fund it therefore it is not a clinical trial or any other type of blind study….hence the main medical field will not recognize that and will not try it and will continue to either ignore the problem or just dispense antidepressants, lyrica, etc.
      Diet is another possible cause of these diseases. I do know many people who get “cured” of fibro by eliminating sugars and gluten products out of their diets. I know of a family who had lymes so bad (lymes and fibro have similar symptoms) that this diet was the only thing that finally cured them.

      These diseases seem to be closely related from what we can see symptomatically and perhaps similar treatments would work. The issue comes with finding Dr who would try them and having the insurance co allow treatment. Also what works for one person doesn’t necessarily work for everyone.

    • Anonymous
      November 9, 2008 at 12:44 am

      That is very interesting about the Fibromyalgia. They wanted to call my problem Fibromyalgia too but then it happened to be a thyroid issue. I personally think Fibromyalgia is actually a disease process. It’s actually a disease that has not gotten a diagnoses and they call it fibromyalgia. I have met alot of people with that diagnoses and many in later years develop the disease that was not diagnosed at first. Certainly not fun having lupus and a doctor tells you have fibro and you know darn well its lupus. LOL! I hate to say this but there are just too many people getting that diagnoses when it’s actually something else causing the problems. Not enough time these doctors spend on a patient also. No wonder so many aren’t diagnosed yet! I also think Fibro with CIDP is the first process of a disease trying to come out of the woodwork. Meaning you have reached two criterias of a certain diagnoses. Being watched by the doctor for another symptom to pop up. The more symptoms the more a diagnoses is made!

    • Anonymous
      May 3, 2009 at 2:46 am

      I saw this in the list archive and was interested, so I thought I might resurrect it to see if anyone else has any comments to add now.

      My brother was DX with fibromyalgia a couple years back. He’s gone from looking “normal” to looking frail and sickly. He’s had a lot of pain issues, but has always been able to walk on his own without any aids.

      I come along this year and get a CIDP DX. I went from walking just fine to having to use a walker in less than 2 months and I so far (knock on wood) haven’t had much in the way of pain issues.

      To make it more interesting, our sister has hypothyroidism. She was DX about 5 years ago.

      We only have one sibling left who is a middle child and doesn’t have some kind of DX like the rest of us (thank goodness!)

      To top it all off, our mother had Lupus.

      I’m just wondering– What’s it all about, Alfie?:confused:

    • Anonymous
      May 3, 2009 at 6:35 am

      Hi Joanne! Your mother had Lupus huh? Does the doctors know about your mother? Lupus too can cause CIDP. That is what caused mine! What other Symptoms have you had besides CIDP. It can run in family members. My one daughter too has Lupus and my other daughter this year got diagnosed with Rheumatoid Arthritis. But I am suspecting Lupus in her also!
      Linda H

    • Anonymous
      May 3, 2009 at 5:26 pm

      Boy, all these autoimmune diseases floating around makes you wonder about what is going on. How do they really determine what is CIDP, Fibromyalgia, Lupus, or Hypothryroidism? I have CIDP and was diagnosed by a high level of protein in my spinal tap fluid. I have had a lot of pain issues lately and wonder if something else could be causing it. I also was diagnosed with mild arthritis (another autoimmune). My other cousins haves autoimmune disorders. I have really been thinking strongly of changing my diet by eliminating processed foods. Since the introduction of processed foods our diseases have increased. Makes you wonder.
      Clare in Michigan

    • Anonymous
      May 3, 2009 at 6:10 pm

      Hi Claire! Normally when a person starts complaining of numbness and tingling the doctors end up doing a number of labs on their patients. And most of the time they order MRI’s just to make sure the person does not have MS or White Matter disease or the typical easy to diagnose disease that will show up in Bloodwork.. So many diseases can cause Neuropathies! And yet there are some Neuropathies that never ever get diagnosed as having any disease at all. That person ends up with an unexplained Neuropathy. CIDP normally shows high levels of protien in the Spinal Fluid. I think GBS also but not sure about that one or not!
      And yes it does make you wonder why so many are getting sick. Processed foods, pollution or is it the Ozone Layer. I guess we will never know what causes many of us to get sick. If I had my choice just like many others in here I think we all would prefer to be healthy individuals. I honestly think alot of our diseases have been ariound much longer than we think though. Back in the olden days they did not have the medical technology like they did many years back. Now giving many patients a name instead of unknown. Too many of us suffer and have to live this way the rest of our lives. I know I will never be cured of Lupus and CODP. But I just deal with it the best I can!
      But I do wonder what causes my disease and why? Just glad they have medications that help to ease the crunch on what we have. If they did not have those medications, I would probably either be dead by now or praying I would die! LOL!
      And sometimes even with the meds I feel like a mess! I have my good days and my bad days. I think we all have them. Just wished they had a cure for each and everyone of us. That is a dream I would love to see. No more IVIG’s no more Chemo drugs. Just a pill that says cure instead of what many of us go through day in and day out.
      Auto-immune diseases though can do many things in alot of families. One that has Lupus might end up another family having Rheumatoid. Another person in that same family may end up with another disorder in the same family but have a different name.
      I read an article once that really shocked me. It claimed in that article that 1 in every 3 women will develop a Rheumatoligical disorder. Wow! 1 in 3 women. What about the other 2 women? There is cancer, heart disease, diabetes and many other diseases. So if 1 in 3 get a disease makes you wonder how many people in this world are really healthy.
      I hope that they get your CIDP in better shape and you start feeling better soon. Will keep you in my prayers! Hugs
      Linda H

    • Anonymous
      May 3, 2009 at 11:59 pm

      Fibromyalgia is very different from CIDP. Fibro is a problem with muscles. CIDP is a problem with nerves. Yes they share some similar symptoms and they are both autoimmune disorders/syndromes. Thyroid disorders are also autoimmune, they have similar symptoms. Fibro doesn’t cause CIDP, just as thyroid problems don’t cause fibro or CIDP. The only thing that connects them all is they are all autoimmune disorders.
      I have had fibromyalgia for over 20 yrs, hypothyroid 16 yrs and neuropathies started 10 yrs ago.
      My mom was dx with hypothyroid yrs after I was. There are many other family members, immediate and distant, with autoimmune disorders.
      Some types of meds can be used for both fibro and cidp, for pain involvement, and inflammation. Thyroid takes its own hormone to correct. Thyroid diseases are easy to test for, there for its considered a disease.
      Fibro and cidp, there are no tests to run for a def dx so they are called syndromes. Once you have one autoimmune dx you may be open to more.

    • Anonymous
      May 5, 2009 at 11:13 am

      Just thinking outloud here…:)

      [QUOTE]Fibromyalgia is very different from CIDP…Yes they share some similar symptoms and they are both autoimmune disorders/syndromes.[/QUOTE]

      Although symptoms are similar, Fibro is not considered to be an autoimmune disease as antibodies are not targeting the body.

      [QUOTE]Thyroid disorders are also autoimmune[/QUOTE]

      If you have Graves or Hashimoto’s. Many other types of thyroid disease exists also which are not autoimmune.

      [QUOTE] Fibro doesn’t cause CIDP, just as thyroid problems don’t cause fibro or CIDP. [/QUOTE]

      In my understanding no one knows what causes all CIDP. I have seen a few studies where people had Graves and then later developed CIDP. My Dr says that he sees a correlation with his CIDP patients and hypothyroidism. I think the jury is still out as to whether thyroid disease can cause CIDP. Until studies are done, it can not be said that thyroid disease does OR doesn’t cause CIDP.
      Since Fibro is a syndrome and not fully understood, the same case can be made for that too.

    • Anonymous
      May 5, 2009 at 1:21 pm

      In my understanding no one knows what causes all CIDP. I have seen a few studies where people had Graves and then later developed CIDP. My Dr says that he sees a correlation with his CIDP patients and hypothyroidism. I think the jury is still out as to whether thyroid disease can cause CIDP. Until studies are done, it can not be said that thyroid disease does OR doesn’t cause CIDP.
      Since Fibro is a syndrome and not fully understood, the same case can be made for that too.[/QUOTE]

      Interesting you would mention the thyroid in relation to fibromyalgia, as I was just reading about anecdotal evidence of people with fibro becoming much improved when treated with iodine.

    • Anonymous
      May 5, 2009 at 2:38 pm

      Cheryl, thanks so much for your post. There are so many autoimmune disorders and for most of us….once you have had one, you can expect to have others. In some ways, I think our illness is an “autoimmune syndrome”. Our bodies are unable to deal with the many impurities we have in us and it doesn’t know what to do so it turns on itself. Just my theory.

      So many illnesses and disorders have very similar symptoms. I think in some ways it is unfair to blame a doctor for not knowing right away what we have. It is sometimes a process of elimination and for some of the disorders there is no clear testing process that gives immediate diagnosis. I know this frustrates all of us, but it is a reality. Hang in there everyone!

    • Anonymous
      May 5, 2009 at 3:58 pm

      [QUOTE=Elihab]Interesting you would mention the thyroid in relation to fibromyalgia, as I was just reading about anecdotal evidence of people with fibro becoming much improved when treated with iodine.[/QUOTE]

      I take iodine too. There is a study being done on iodine and fibro. It is on-going and being done privately by a few MD’s. What little I have heard is that there is a strong link that iodine does work for many of the people in the study…BUT I wish that they would print #’s so that we’d really know for sure.

    • Anonymous
      May 5, 2009 at 7:28 pm

      Fibro is an autoimmune disorder/syndrome-because there is no cure, no test. I have been to many well informed drs in the last 25 yrs and I have read all sorts of information on the subjects (not much online is reliable). Hypothyroid is an autoimmune disease-as it can be treated with synthroid, and there are tests to dx it. It has many of the same characteristics as fibro except the fact that fibromyalgia has to do with muscles and not hormones as hypothyroid does. and that is a fact. cidp has to do with demylination of the nerve sheath, it is autoimmune in nature, it is a syndrome because there is no cure and no test to make the dx. It is a progressive neuropathy, may be slow, fast, remittant and relapsing in nature. Fibromyalgia has 25 tender spots, one must have 18 of 25, for over 6 months, to be dxed with it. No type of bloodwork will tell you you have it, but it can have an effect on your bloodwork when it comes to other tests -it can make your results turn out as low normals or high normals-depending on the test.
      I do agree alot more research needs to be done on CIDP.

    • Anonymous
      May 10, 2009 at 11:23 pm

      I do not agree… a syndrome is not defined by the cure, is defined by the mechanic of the cause of the disease.
      In fibro they just define sympthoms, now the new fibro test is the anti-polymer auto-antibody test, you can check it on the web, but no aproved by FDA.
      The tender points test is non sense, everybody that is not sleeping well has the 18 tender poiunt test,
      you can check it on the web. I have the 18 tender points hurting me all day… I have fibro?
      My sed rate is 30, and GD1 and GM4 auto-antibodies are very high (1/15000 by ELISA).
      I think fibro is a no diagnostic for all the pain people that docs can not say who they suffer from.
      The neuros I have seen do not believe in fibro, even the reumathologist do not…..

    • Anonymous
      May 11, 2009 at 12:04 am

      You might wish to contact the Arthritis Foundation and inform them of your online findings, I’m sure they would be interested in it. Your tests, are different from what neuro specialists have performed on me and many others, show that you have an inflammatory process going on in your body-which you do if you have cidp,so that is not a good diagnostic test to rule fibro out. Correct info on fibromyalgia can be found at the arthritis foundation site or any fms chapter in the US.

    • Anonymous
      May 11, 2009 at 12:27 am

      You said yourself….”Understand Your Limits, But Never Limit Your Understanding”

    • Anonymous
      May 11, 2009 at 12:56 am

      I just bought the new textbook by Amato and Russell called Neuromuscular Disorders published in 2008. I bought it to learn more about CIDP. The text just has a small section on Fibromyalgia and I will quote it.

      Fibromyalgia and myofascial pain syndrome are commonly diagnosed disorders that are controversial in regard to their nature because of the lack of objective evidence of organic disease. Fibromyalgia is often dominated by subjective complaints of generalized muscle pain in addition to other somatic complaints including headaches, fatigue, and abdominal cramps. In this regard, it shares many features with the somatoform disorders and the equally dubious chronic fatigue syndrome.

      There is no “gold standard” for diagnosing fibromyalgia. Fibromyalgia may be diagnosed if a sufficient number of “tender points” at specific locations on the body are found. Unfortunately, the study by which these criteria were based is scientifically flawed. The investigators predetermined that tender points were necessary for diagnosis and they each received training in how to identify such tender points. Patients diagnosed with fibromyalgia based on the presence of tender points were then evaluated by other investigators to confirm their presence. The fact that these tender points were reproducible (good intra-observer reliability), served as a validation of the diagnosis for the investigators. Detecting tender points is dependent on the patient’s subjective inmput and is in no way a truly objective marker. The neurological examination including muscle strength testing and laboratory evaluation is otherwise normal in fibromyalgia. Likewise, serum CK, nerve conduction studies, and electromyography (even of in the areas of tender points) are normal. Finally, thee is no difference in frequency of abnormal histologic findings compared to control populations.

      Myofacial pain syndrome (MPS) is similar to fibromyalgia but the pain is described as being more focal or regional as opposed to generalized. Rather than tender points, advocates of the disorder suggest patients have “trigger points”. These trigger points have been associated with “taut bands,” “nodules” and “local twitch responses”. However, a blinded, controlled studies have demonstrated a low sensitivity and specificity of this so-called diagnostic marker of MPS. One study described abnormal “spontaneous EMG” activity in the area of the trigger points. However, review of the published figures suggest this was just normal end plate spike activity. The majority of electromyographers, including ourselves, have not been able to verify the presence of any abnormalities in MPS. As with fibromyalgia, the clinical examination, serum CK, EMG and NCS, and muscle biopsies are normal.

      Regardless of the orgnanicity of the pain related to fibromyalgia or MPS, the patients’ symptoms are often quite distressing and disabling to them. We often recommend treatment with tricyclic antidepressant medications, pregabalin, or gabapentin as we do with other chronic pain syndromes. Patients my also benefit from physical therapy program to increase their endurance and tolerance. (End of quoted article).

      I don’t really have comment–I just was reading the thread and hauled out my new textbook which is used as reference book by neurologists and GPS as I remember reading the section on Fibromyalgia. It basically agrees with w PJThomasset said concerning the viewpoint of the neurological community.

    • Anonymous
      May 11, 2009 at 1:03 am

      Actually I do have a comment. I have read lots about autoimmune disorders of all kinds, and I would suspect that Fibromyalgia is autoimmune. I think the neurological community is very traditional and somewhat closed minded, and because they can’t find it they think it doesn’t exist. Not necessarily so in my opinion–these autoimmune conditions can be very difficult to diagnosis due to their periods of exacerbation and remission.

    • Anonymous
      May 11, 2009 at 5:58 am

      That how things are today Laurel. Good for your book.
      I have bought about ten fibro books, none of them have any serous reference paper works at the end.
      Besides I bougth some ankylosing spondylitis (because of my sacroileitis), peripheral neuropathy books, CIDP and GBS books. All of them have several references and paper work, with double blind test and scientific evidence for the diseases.
      I think that if one takes a fibro patient, who has pain, tingling, numbness and weakness to a neuro who has the power (I mean the health insurance $ to alow the test to be posible) to order all kinf of test, you will find that the fibro patient actually
      is having a “real” disease; peripheral neuropathy, MS, RSD (Reflex Sympathetic Dystrophy), vasculitis, Amyloidosis, Arachnoiditis, or any other hundred rare neurological diseases that we (CIDP sufferers) never read of them.

    • Anonymous
      January 13, 2010 at 4:24 pm

      Since being diagnosed with CIDP I feel like I’m falling apart sometimes. It seemed like It opened the door for everything else to go wrong. I have since been diagnosed with fibro, restless leg syndrome, sleep apnea, chronic pain, headaches,I had to have a hysterectomy, my gall bladder removed, and a kidney stone!:eek: Has anyone else had these problems?Oh well, I just keep on truckin’!!!!:D

    • Anonymous
      January 13, 2010 at 8:04 pm

      I read that article and found it very interesting. I dont know. after all my vast reading and seeing how my diagnosis has illuded doctors even with hard evidence, I dont really know what to say to a disease with so many complex symptoms like brain fog, weakness, gastroenterological complaints, skin rashes, severe pain etc that is diagnosed by merely being poked in 18 different places. I think that it was discovered about the time HMOs came out and I think it is an easy and cheap diagnosis to hand someone to pacify them until tests come up possitive for something else and if they dont then who knows any different. I read that fibro is “never fatal” and who uses always and never in medicine.
      I heard the condecending way doctors say “maybe its fibromyalgia”.
      I am not saying that the good people who suffer from fibro are not ill, actually i am saying that they are and that it is very dangerous to hastily hand that diagnosis to people who might have soemthing dangerous.