Any Research on Fibromyalgia and Multiple Sclerosis?

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Mar 16, 2003.

  1. dhcpolwnk

    dhcpolwnk New Member

    I have had multiple sclerosis for many years and was diagnosed with fibromyalgia on Aug. 29, 2002. I realize that CFS, FM and chronic myofascial pain often seem to go together, but I believe there also are a lot (or at least a significant number) of people who have both MS and fibro.

    While I have seen research articles dealing with fibromyalgia and CFS, or fibro and CMP, or all three together, I haven't been able to find anything at all dealing with possible connections or interactions between MS and fibromyalgia.

    If such research exists, I'd really like to get it. My neurologist just doesn't want to hear about fibromyalgia, but especially after reading an article (I think it's in the library at this site) about brain trauma and fibromyalgia--and especially in view of other things I seem to recall reading about the role that illness or disease can play in triggering fibro--I can't help wondering if there may be a connection that is being overlooked. After all, trauma isn't the only thing that can cause brain damage. If brain damage is responsible for triggering fibro, wouldn't the danger exist from aquired as well as traumatic brain injury?

    I have plenty of questions, but very few if any answers. That's why I'd really like to know about any research in this area. I have found nothing in my efforts to search the web on this subject. Even searching the library here at Immune Suport came up dry.

    Thanks in advance for any information you might be able to share.

    --Laura R.M.
  2. Tattoopixie

    Tattoopixie New Member

    I believe it's been written (sorry, don't remember where) that we are more likely to get MS then the average person, but I don't recall there ever being a specific study done just on that subject. Sorry I don't have more info.
  3. lease79

    lease79 New Member

    I once found a site on-line that had a comparison of CFS & MS. I think I printed it out, but have no idea what I have done with it???
    I was SOOOO sure that I had MS a couple of years ago, as this dd started more like MS (major visual probs) & has progressed like it. But alas an MRI showed nothing.
    Goodluck with your research, I hope someone can help you ;)

  4. Mikie

    Mikie Moderator

    Stealth infections, like mycoplasma, are suspected in people with FMS and autoimmune illnesses like Lupus and MS. Stealth bacteria and viruses use the body's own DNA to hide under the immune system's radar. The infections, in their active state, can trigger CFS/FMS. When they go stealth, hiding inside our cells, they go out into the bloodstream when they have killed off their host cell and are looking for a new cell to invade. If the immune system recognizes the bacteria or virus as a foreign invader, it is possible that it will also recognize its own DNA as a foreign invader and an autoimmune response will ensue.

    Dr. Garth Nicolson has talked about this in his articles on mycoplasmas. Perhaps you can find something by doing a web search on mycoplasmas or on Dr. Nicolson (note the spelling of his name).

    I have a good friend who has Lupus and FMS. Strangely, many with autoimmune have those illnesses diagnosed prior to having a diagnosis for FMS.

    Love, Mikie
  5. dhcpolwnk

    dhcpolwnk New Member

    I appreciate all the responses so far to my question about research on MS and fibromyalgia. Most of the responses seem to suggest that MS and/or other autoimmune diseases may be misdiagnosed fibromyalgia rather than MS. I wouldn't doubt that as a possibility, but there's no question about my having MS, which was diagnosed long before my fibromyalgia. My MRIs show "extensive white matter disease," according to one written report. I was wondering about any research that might show MS as a causative or perpetuating factor in fibro.

    I know that some symptoms of MS and fibro overlap, and I do think I'd had fibromyalgia for a while before it was diagnosed, but I don't think I had it back when my MS was diagnosed.

    I did have mycoplasma pneumonia about 15 years ago, but it was *after* my MS diagnosis. However, although my doctors seem to agree that I have both MS and fibromyalgia, they don't seem interested in investigating any stealth infections, like whether I still have mycoplasma in my body, or whether I might have low thyroid function even though the usual thyroid tests come up normal (not even low normal, apparently). I keep getting hot flashes and even had night sweats when I was on hormone replacement therapy. (At my doctor's suggestion, I've now substituted a combination of black cohosh and soy isoflavones, but after what I've been reading here about soy, I'm having some second thoughts about that.) Except for the hot flashes, though, my hands and feet are typically very cold, and about 18 months ago, I suddenly started gaining weight, though I don't think anything in my diet, exercise or medication regimen had changed. (Then again, maybe I'm just looking for an excuse!)

    Also, a couple of years ago, I started having strange breathing problems. I'd be sitting at my desk working on my computer and suddenly realize that I was running out of air. I'd take a couple of deep breaths, and it would be okay for a while. That started happening more often, and in more different places. I had a slew of tests, but everything came back normal, including a sleep apnea test. I even convinced my neuro to give me a new MRI to see whether I had lesions in areas that might affect my breathing. Apparently, I didn't. The breathing seemed to improve when I started taking Flonase and Atrovent (an ENT doc prescribed it because of severe rhinitis), but after reading some things on this list about fibromyalgia and dysautonomia, I'm wondering whether fibro-related dysautonomia might have been at least a factor in the breathing problem.

    Any suggestions about how to get them to pay attention to this stuff? So far, about all I've been able to get is referral for PT and to a pain clinic (for which I'm on a waiting list).

    I'm probably throwing way too much on too many topics into this message, and I apologize for that. It's just that I can't always remember everything I want to ask about if I stop my stream of thinking to set up separate messages. Besides, in many ways, all of these questions *are* connected: I want to know about any research involving people with both MS and fibro that might help me get some answers--or at least help me get my doctors to help me *look* for some answers!

    Thanks again.

    --Laura R.M.

    [This Message was Edited on 03/17/2003]
  6. sapphire

    sapphire New Member

    I don't have any info on MS and Fibro. I frequent an MS message board and I did notice several there that has both. I wondered about this also.

    I'm going through the MS thing again. I've had several episodes during the past year and a half. This last one I couldn't lift my leg but about 6" off the floor. I had no idea I couldn't do this till my Dr asked me to raise it. I just started crying. I have never cried in a Drs. office before. They thought I had it in Dec but decided I didn't but now here I go again.

    I also have the site where it compares the symptoms of FM, CFS, and MS. I find that very interesting. They really do overlap.

    Sorry I couldn't help you.

    Take care,

    PS I forgot to mention that I have the breathing thing also. I can just be sitting and all of a sudden have to take a deep breath. I also have Dysautonomia but I don't know if it is related.[This Message was Edited on 03/17/2003]
  7. ohmyaching

    ohmyaching New Member

    I was reading about HHV6 and it's relationship to MS in the library on this site.
    It said that HHV6 seemed to be involved in demyelinating illnesses like PML and MS and perhaps may play a part in these diseases, but nothing's been proved. It also said that there didn't appear to be any "compelling evidence" that HHV6 is associated with CFS -an opinion I don't share.
    B12 is supposed to be good for nerves and good for easing herpes symptoms. You may want to check that you are getting enough B12.
  8. dhcpolwnk

    dhcpolwnk New Member

    <PS I forgot to mention that I have the breathing thing also. I can just be sitting and all of a sudden have to take a deep breath. I also have Dysautonomia but I don't know if it is related.>

    Sapphire, you said you have dysautonomia. Is that part of fibromyalgia, or is it something different? How is one tested for that? I think I checked on the net when my breathing problems were at their worst, and I wasn't sure whether my symptoms were consistent with what I read about the condition. But more recently, I believe I've seen material here about dysautonomia associated with FM or CFS (I don't recall which), and I started thinking that maybe this is some subset of dysautonomia that *does* affect me.

    I see my primary care doctor on Thursday, March 20. He's a nice guy and usually willing to work with me, though I don't think he really knows much about fibro. But I think I'd get a lot farther if I knew what questions to ask and, if appropriate, what tests to ask about.


    --Laura R.M.

  9. sapphire

    sapphire New Member

    I'm pretty new to the dysautonomia thing but I have POTS which is a form of dysautonomia. There are different forms such as NMH(neurally mediated hypotension). These are usually found in people with CFS and I don't know about FM. I believe I've had this for a long time and all my symptoms were just attributed to the CFS. I have no idea if the shortness of breath is related or not.

    As far as testing goes, the only one I know for sure is a Tilt Table Test. Although I didn't need one to be diagnosed. It was pretty apparent.

    I hope you find some answers soon. I tried for a long time to get the Drs. to listen to me. I ended up in the hospital and they finally listened. It's a shame what we all go through and have to endure.

    Take care,
  10. beckster

    beckster New Member

    I believe Dr. Cheney has said a good number of his CFIDS patients go on to develop MS, but I don't remember in which article he said it. Also, Dr. Shoemaker's article, (which I found using the search on this site) is interesting, connects up a lot of things,and he claims he can reverse the white spots out with his treatment.

    Unfortunately with this DD we have to be our own researchers.
  11. missvickielynn

    missvickielynn New Member


    I read your posts all the time, and find them very interesting.

    While this is not exactly what you were looking for, I thought you might find this article (below)interesting; not only because you have MS, but because it refers to CFS (not just "Chronic Fatigue") as a SIDE EFFECT OF MS!!

    His opinions about Elavil were interesting, and I completely agreed with him. Also agreed with his opinions on the useful drugs to treat neuropathic pain (which is one of my most significant symptoms).

    Also, there were the studies (last year or so) that showed an increased incidence of autoimmune diseases in women who had been first diagnosed with endometriosis. These studies referred not only to Lupus, Rheumatoid Arthritis, and MS as autoimmune, but also CFS and FMS. I still have 2 different copies of those articles on my computer, if you are interested in seeing them.

    Many of my most disabling symptoms are very MS-like. Long before I ever received the separate diagnoses of CFS, followed by Endometriosis, then followed by FMS......before I even knew anything about these, I was afraid that my symptoms were indicating either MS or Systemic Lupus. I still, to this day, believe that....although I have doubts that I will ever be able to pursue a definitive diagnosis.

    But then, on the other hand....the symptoms lists of both CFS and FMS are so much like those of MS....when you really read up, and listen to the stories that the patient groups tell. It is beginning to look more and more like different expressions of autoimmune disease, brought on by various viral, bacterial, environmental triggers, and by physical and/or emotional trauma or stress, especially if those stresses are numerous, long-term, and unrelenting.

    Hope you find this article interesting.




    Multiple Sclerosis (MS) is an autoimmune disease due to a combination of stressful factors such as early infancy or childhood viral infections stimulating the immune system, later in life complicated by recurrent stress leading to recurrent attacks of rogue and dysfunctional immune system coding. It is more likely to develop in patients of northern European lineage. It is more prevalent in colder climate countries. Females are almost twice as likely to suffer from MS. It has four main forms: relapsing-remitting, seen in 4/5 of patients, primary progressive which starts at somewhat older age and is seen almost equally in both sexes, secondary progressive which may follow the relapsing-remitting form, and relatively benign form with a few attacks (relapses) followed by years or decades of no new attacks unless the patient is exposed to a major stress - more common in females. According to a European data base center (NEMJ, 11/16/2000), the primary progressive form takes a median time of around one year to start showing disability. This is in contrast to a median time of 11 years in relapsing-remitting course.

    MS is not diagnosed by the process of exclusion. It is diagnosed by careful history taking, thorough neurological examination, and tests such as MRI(not CAT Scan), physiological tests such as evoked potentials (BAER, SER, VER) and laboratory tests, such as serum and CSF immunological changes. Monitoring the T-cell lymphocyte function test may help in prognostication and treatment of MS.


    The diagnostic tools in order of importance are:

    1. A careful history taking which if taken in detail will provide vital information in regard to how the very first attack in childhood or early teenage years started as a viral infection (measles, infectious mononucleosis, whooping cough, etc). The same history gives a detail of the nature of the disease and helps with prognostication in regard to the fact that the patient may have had multiple attacks which may have been mistaken for the patient being hysterical or malingerer or Munchausen&#8217;s Syndrome (blaming the patient for being a liar), etc.

    2. A careful neurologic examination which specifically, quite frequently reveals evidence of thoracic spinal cord and/or brain stem involvement with sensory loss over the face, chest, trunk, or abdominal regions.

    3. MRI. Unfortunately, there are a lot of false positive and false negative MRI&#8217;s. The MRI shows typical changes in MS, but the damages to the white matter of the brain and spinal cord can be quite variable. Other diseases may mimic MRI changes seen in MS. For example, patients who have had early childhood viral infections may show multiple areas of abnormal density which may be the result of nothing but the original viral infection. Other patients may have had a head injury which may show abnormalities similar to MS. MRI should be taken for its value in regard to its limitations, but it is a useful test in research studies to find out if more plagues are evolving. In this regard, it also helps with the study of medications trials for MS.

    4. The next series of informative tests are evoked potential tests. These are totally harmless and are done in the form of visual, auditory, or somatosensory evoked potentials. The tests simply gently stimulates the nerves to the eye, inner ear, or to the spinal cord, and record the delay of conduction of the impulse from periphery to the brain. In at least 1 out of 5 patients with MS, evoked potentials may be quite abnormal in face of no abnormality on MRI.

    5. Another test that seems to be out of vogue now-a-days is the spinal fluid evaluation. The lumbar puncture and the spinal fluid can be quite important in diagnosis and in prognostication of the disease, and more importantly in differential diagnosis. It can reveal other diseases that mimic MS. It can reveal the severity or lack of severity of the MS reflecting itself in the tests on the spinal fluid such as infections. Obviously, in this day and time, only less than 10% of such patients require spinal tap, but if there is doubt about diagnosis and there is need for more definitive diagnosis, this test should not be ignored.


    The disease should be treated as aggressively as is safe. The common practice of "wait and see" is asking for more permanent damages due to MS. At the present time, there are plenty of medications that can be used in a rational fashion, suppressing the disease and proportionately reducing the damages caused in the central nervous system by MS. The treatment should be tailored to the type and severity of the MS individually. Four-fifths of the patients suffer from the intermittent (relapsing-remitting) type of MS. The prognostic factors are influential to the outcome of the treatment. Early treatment is imperative in all forms of MS. The response to treatment is individualized. However, the relapsing-remitting type of MS which shows a tendency for few and far in between attacks of flare-up of the disease, especially in a young female, and in a patient who has not been exposed to multiple stressors (such as husband with poor understanding of the disease, or intake of alcohol, or frequent viral infections), is more likely to respond positively to the treatment and to have less residuals from it.

    On the other hand, male patients in the late youth or middle ages, with frequent attacks of illness, and with a tendency to be exposed to stress either due to the work environment or due to financial reasons will have a worse prognosis.

    In the relapsing-remitting MS patients, there has been a tendency for starting the treatment with IV corticosteroid (Prednisolone) followed by oral corticosteroid by mouth. The usual schedule is 4-5 days of IV Prednisolone followed by a few weeks of corticosteroid by mouth. First of all, there is no proof that this form of treatment will do better than the newer forms of treatments.

    Secondly, repetitive treatment with corticosteroids has a tendency to cause suppression of the function of the adrenal glands and secondarily, make the patient more susceptible to suffer from frequent infections, and severe chronic fatigue syndrome (CFS). So, in these patients it may make sense to start IV Prednisolone for 4 days, then to follow with newer medications listed below.

    There is a tendency to limit the treatment to corticosteroid therapy for a few weeks with no subsequent treatment until the next attack. This may leave the patient unprotected. As soon as possible, the patient should be treated with one of the Interferon or copolymer type of medications.

    Early treatment with Interferon and or Glatiramer acetate(GA, aka Copolymer- 1 or Cop-1) is far more effective than corticosteroid treatment. Immune therapy plays a major role in the treatment of MS. Beta Interferon is an effective form of treatment, but causes too many side effects. In our experience, only less than 25% of the patients could successfully continue the treatment with Beta Interferon. It has a harsh effect on the immune system, resulting in practically intolerable inflammation, fever and other immune system dysfunction's in the majority of patients. Among the patients who can tolerate Beta Interferon, the relapse rate is decreased by up to 30%, which is a major improvement for prevention of reoccurrences in MS.

    Glatiramer acetate(GA / Copaxone) inhibits the myelin - reactive T-cells by blocking human leukocyte antigen (HLA), as well as antagonizing the T-cell receptor. GA (Cop-1) exerts a strong inhibitory role in the proliferation of myelin basic protein (MBP).

    Interferon Beta 1a (Avonex) is well tolerated, and is quite effective in improving the MS pathology, reducing the progression of neurological impairment and reducing the relapse rate. It is better tolerated than Beta Interferon. Copolymer- 1 is also effective in the treatment of remitting relapsing attacks of MS. The combination of Cop-1 and Avonex is even more effective in the treatment of more progressive and destructive MS patients. The combination works better due to the fact that Cop-1 acts as a complimentary agent; whereas Avonex interferes with antibody formation, the Copolymer-1 (Cop-1) as drone or a decoy to protect the brain from the destructive effect antibody against brain tissue.

    IV immunoglobulin treatment is quite effective in the management of MS. The published articles in MEDICATION LINE from January 1981 through January 1995 reported the effect of IVIG in 189 patients. Ninety-eight (52%) of the patients responded with improvement with the help of IVIG. Since January 1995, there have been other large studies. Five hundred fifty MS patients were treated with IVIG, showing reduction and prevention of recurrence of the disease. Achiron, in multiple trials of IVIG treatment, found this form of treatment very effective in reducing the relapses (exacerbations) of MS.

    Hyperbaric oxygen has not proven to be effective in treatment of MS. Total lymphoid radiation is too harsh and harmful, and should not be considered for treatment of MS. TNF (tumor necrosis factor) and anti-CD4 antibodies are being studied by Compston in Cambridge, England. Results are not finalized.

    Certain forms of chemotherapy such as 4-aminopyridine (4AP) treatment are helpful in more severe MS patients. The chemotherapy with 4AP is not similar to chemotherapy for cancer. In MS, chemotherapy should be applied in conservative doses, avoiding hair loss and bone marrow suppression.

    Weiner and colleagues, have been reporting their experience with oral vaccination (ingestion of myelin antigens) and have noted some promising results in their preliminary study. This form of treatment is assumed to selectively stimulate T-cells secreting anti-inflammatory Cytokines.

    MS usually causes severe pain in over 60% of patients. The pain itself is a strong stressor instigating flare-up (relapse) of MS. Treatment with anticonvulsants such as Tegretol (non-generic), Klonopin® (non-generic), and Depakote help in the management of severe pain. Analgesic antidepressant treatment with Trazodone or Desipramine (not Amitriptyline), opioid antagonists, Tramadol (Ultram) are the minimum requirements.

    MS can lead to sensitization of spinal cord, causing myoclonic seizures. Treatment of choice is Klonopin (non-generic). Spasticity should be managed by Zanaflex, Baclofen (oral or pump).

    The stress of bed rest and inactivity on one hand, and the stress of too much work and isometric exercise are very harmful to any immune system disease(e.g., Lupus, MS, Arthritis, CRPS, etc).

    The stress of tremors, spasticity, and chronic fatigue syndrome (CFS), should be aggressively counteracted: for CFS, treatment with proper analgesic antidepressants at night time to prevent insomnia is essential: Trazodone 50-250 mg at bed time, or Desipramine or Doxepin (at 25 to 200 mg doses) is usually well tolerated. If the CFS is quite disabling in spite of the above-mentioned treatments, supplemental doses of Effexor 37.5 to 75 mg in the morning are helpful.

    In more advanced stages the immune system modulated by the sympathetic system becomes exhausted, and leads to hypertension. After several months the hypertension changes to hypotension (especially orthostatic hypotension) causing dizziness, CFS, and unsteadiness. The hypertension responds best to alpha blockers such as Hytrin. The hypotension responds best to treatment with Promantine (Midodrin). The hypotension responds best to treatment with Promantine (Midodrin).

    Treatment with Amitriptyline (Elavil) should be avoided: it may aggravate hypotension, CFS, as well as causing weight gain(an average of 6-7 Kg in the first year).

    SSRI antidepressants may partially and temporarily help CFS, but in the long run suppress any sexual desire in over ½ - ¼ of patients causing stress, marital problems, and agitation. SSRI should not be treatment of choice for MS. Treatment with Effexor is helpful to relieve CFS.



    The treatments should not be just limited to counteracting the plague formation of multiple sclerosis, but it should also address the disabling complications of MS. Here are some of the disabling complications.

    Pain. Over 60% of MS patients suffer from pain. This has been one of the most disabling and most ignored complications. Treatment with Carbamazepine (Tegretol brand-name) is quite effective for sharp or stabbing or electric shock type of pain. If the patient has a burning type of pain, then the treatment of choice would be Gabapentin (Neurontin). Valproate (Depakote) is also helpful for treatment of pain or severe headache. If the patient has deep pain in the bones and muscles, then the treatment of choice would be increasing activity, mobilizing the patient, and in addition, treating the patient with analgesic, such as Tramadol (Ultram).

    Analgesic antidepressants are treatment of choice in practically every MS patient with pain. The antidepressants are not given because the patient is depressed, or has any kind of psychiatric disease. It is given because it prevents the pain. It also usually provides good sleep. Some antidepressants such as Zoloft, Paxil, and Prozac don&#8217;t have any significant analgesic value. In addition, they can aggravate the chronic fatigue syndrome and in 1 out of 5 patient they can suppress sex desire which would complicate the marital relationship. The treatment of choice is with antidepressants such as Trazodone, Desipramine, or Doxepin. These three antidepressants are quite effective without serious side effects. The use of Amitriptyline (Elavil) should be avoided because it has a tendency to cause obesity (up to 8kg in the first year, and then up to 6kg the years after). Also, it aggravates the CFS, and can cause low blood pressure.


    In approximately one fifth of MS patients, neuropathic pain (pain accompanied by inflammation, hypersensitive skin, and temperature and circulatory changes) is seen as a complication of MS leading to sympathetic nerve dysfunction. The treatment of choice is a combination of antidepressants (such as Trazodone or Doxepin) and anticonvulsants (Depakote, Trileptal, and Klonopin®) as well as nerve blocks and epsom salt bath are quite effective.


    For the treatment of CFS (which the Social Security Courts accepted as the most disabling type of chronic disease, treatment of choice is Effexor. In MS patients who have problems with fatigue plus anxiety, which is totally expected, plus a tendency for depression, Buspirone (Buspar) at the dosage of 5-15mg 3 times a day is very effective and has the least side effects. The MS patients should stay away from benzodiazepine (BZ) type of tranquilizers and sleeping pills such as Xanax, Ativan, Librium, Valium, etc. These medications suppress the formation of endo-BZ in the brain, resulting in severe chronic fatigue, withdrawal anxiety and depression, and inactivity. They should be replaced with Buspar. The two exceptions are Klonopin® and Serax which do not suppress the formation of endo-BZ&#8217;s.


    For muscle spasms, spasticity, flexor spasms, and poor mobilization, the treatment of choice is Zanaflex, and if the patient can not tolerate Zanaflex, then Baclofen. If the spasticity progressively deteriorates, then Baclofen infusion pump through the spinal fluid can provide excellent relief, and can help mobilize the patient. For spinal cord sensitization (myoclonic jerks, or falling attacks) Klonopin® (non-generic) is helpful.

    The above medications have the potential of having serious side effects, especially if given in large doses and in combination with a lot of other medications. The patient has to consult with his/her doctor, and also has to read about the side effects and educate herself/himself. The above information is nothing but to help educate the people about the subject of MS, and it does not at all imply that someone can just read about it and practice on herself.

    Physical therapy is essential to prevent the patient ending up in a wheelchair or a nursing home.


    Bladder complications are quite serious. In mild cases, the treatment with Detrol, or Elmiron can be helpful, but urologist consult is a must, and the urinary complications should be treated as aggressively as possible. One of the common causes of death (which happens infrequently in MS) is kidney infection secondary to MS.

    6. FOOD

    Correction of diet is imperative. MS is a disease of stress. Certain foods aggravate stress such as chocolate, hot dog, cold cuts, alcohol, 5'C (candy, chocolate cookie, cake, and cocktail), and any guts meat i.e., liver, kidney, etc. The patient should never skip a meal because fasting or skipping meal causes fluctuation of blood sugar and secretion of adrenaline which contributes to more stress and more weight gain. Also, inactivity is a major stressor and aggravator in this regard.

    Finally, the worst of all treatments and alternatives is to tell the patient that there is no cure for MS and to do nothing for the patient. Interestingly, this is a common practice among the clinicians and should be strongly discouraged.

    Avoidance of stress (e.g., marital problems), proper diet (please refer to the 4F diet )and exercise are essential.

  12. Mikie

    Mikie Moderator

    This is excellent info. Thanks for posting.

    Love, Mikie
  13. missvickielynn

    missvickielynn New Member

    Needless to say, I found it fascinating, particularly that he things that Chronic Fatigue Syndrome is a common PART of MS. Reading this article certainly re-awakened my concerns about my symptoms possibly indicating MS.

    What unbelievably similar diseases these all are, with so many similar symptoms, and even similar suspected causes, such as HHV-6, Mycoplasma, etc.!

  14. dhcpolwnk

    dhcpolwnk New Member

    I wanted to thank you for posting the article on MS and CFS. I need to read it more carefully, but I'm not sure how relevant it is in my case, since I have fibromyalgia but *not* CFS.

    In found the comments on false MRI readings interesting. However, my MS diagnosis is pretty definite. My first MRI (in 1985) showed only a few lesions, but my recent ones have shown "extensive white matter disease" and other signs of progression. (Until Nov. 1, 2002, I wasn't taking any of the MS drugs. Though I wasn't having a lot of exacerbations, apparently, the disease was progressing.) The fact that my first MRI showed only a few tiny lesions compared to the recent MRIs seems to rule out any false positive based on earlier viral infections in my case.

    I intrigued to see that according to the article, "MS is not diagnosed by the process of exclusion." When I was first diagnosed (before MRI became widely available), the neurologist told me the opposite. He said that MS *was* largely diagnosed by exclusion of other possibilities. He tested me for lots of things, including lupus. I had a lumbar puncture (oh! that was fun--*not*!) and VER (maybe other tests, too; I don't remember). Then, several years later, my first MRI. So I think my MS diagnosis is pretty definite, despite the definite overlap of many FM symptoms.

    Anyway, I found the article extremely interesting. I just wish it talked a little about fibromyalgia as well as CFS. As I said, as far as I can tell, I *don't* have CFS.

    Thanks again.

    --Laura R.M.
  15. greenthumb

    greenthumb New Member

    I really appreciate your posting! One thing I wanted to comment on: the section on how Elavil (amytriptyline) can cause bad side effects. I was on that at the beginning of 1996 for treatment of FM; The Elavil didn't work from the outset and the doctor kept upping my dose until it completely shut down my bowel for 7 weeks and I was scheduled for a colostomy! My gastro wisely decided not to subject me to a medical procedure to cure a medication-induced illness, but until the resolution came, I was one sick puppy. Gee, if I had only known then what I know now--basically that there's a reason they call it the PRACTICE of medicine...

    I was wondering if an indicator of MS (or like illnesses) is that typical FM drugs do not work to reverse symptoms. Has anyone had this experience? For instance, I had tremors on anti-convulsants. I now take nothing for the nerve pain but have broken 3 teeth from clenching 24 hours a day.

    Right now 50 mg tramadol, 5 mg Ambien & Ultracet are what get me to sleep at night.
  16. JerseySue

    JerseySue New Member

    just my own personal experience. I have had problems for years now. They would come and go in cycles. The drs in the past tested me for lots of viruses and such.

    Now 20 yrs 2002 I was diagnosed with graves disease...(autoimmune hyperthyroid). But I continued to have symptoms and they have certainly progressed. I have been eurothyroid for 2 yrs now. I went to different drs, one I have now is an internist/rheumy. I am tettering to get rid of him when I can find another competent dr to take his place. He is the one that diagnosed me with FM. That was 2 yrs ago. The only thing is at the time, I felt like hell and was soooo relieved to have a name of any kind to put to my symptoms.

    He never tested for anything neurological, never mind MS. Over the time with him, he has become very passive in his treating me. I have tried Elavil for almost a did not help at all...I am a thin person and I gained 12 lbs on this. I do not take it anymore. Also the flexeril didn't help. I got him to switch to baclofen. It seems to help more, but I can only take so much during the day. I need to be able to function.

    Last I saw him, the dr said well if it will make you feel better and put your mind to rest, then go to the neuro. So I did. I saw this neuro 2 yrs ago, when he tested me for MG. MG runs in my family bigtime. But that was neg. thank goodness.
    Anyway, this time he tests me for MS. The Mri of the brain came back abnormal.
    I have 2 bilateral lesions consistent with MS.
    Spinal Mri-no lesions, but shows mild degenerative disc dx.
    Emg-nerves a little slow, nothing major

    So now this Monday I'm having a lumbar puncture. UGH.
    But it needs to be done. I need to know what is going on.

    Even if it is neg. I will have the Brain Mri repeated in 6 months to monitor it.

    I upsets me when drs poo poo things, and ignore what you are telling them. I know my body, and regardless of what any tests say, there is something not right. It is not normal to feel this way and have these symptoms.

    My last visit with the internist/rheumy really left a bad taste in my mouth. He says, I still really think exercise is the best thing for FM.
    I am not overweight. In fact I weigh 113 lbs now, because I am losing weight again for no reason.
    I told him "that's great if I could actually exercise"

    I have never been a sedentary person. I ran track, played softball, have 5 kids now, ect.....
    My physical strength is at an all time low, which bothers me because I have always taken pride in being physically strong for a woman. And now I'm not.
    Anyway, I'm rambling away here and venting sorry about that.
    I think these things are linked and if drs could just put the big picture together they would see that.

    I read on an ms board once, that fibro and CFS are ms without the lesions. Interesting comment.
    Take care.
    Gentle Hugs Sue
  17. Wasabi

    Wasabi New Member

    Here's an interesting article on a possible link between infection with Chlamydia Pneumoniae and MS:

    This article discusses Lyme Disease that is misdiagnosed as MS:

    If you do a web search on Multiple Sclerosis and Chlamydia Pneumoniae, you'll come up with a lot of articles discussing this particular theory.

    I wish you all the best as you try and find out more about the illness.
  18. dhcpolwnk

    dhcpolwnk New Member

    I was surprised to see new messages on this thread, but since there are a couple, I thought I'd update things a little.

    I still have both MS and fibro, and my MS seems to be progressing (slowly). I changed neuros, and my new one does pay attention to the fibro. I have some new MS symptoms to deal with (primarily bladder), and I now use a power wheelchair, though I still walk around my house with a cane most of the time. (The PT who evaluated me for the chair said she was afraid I would fall. So they authorized the chair. It's been interesting making the transition from the scooter I used for 17 years to the power chair, but I'm very happy with it now.)

    But my reason for this post is primarily in response to the comment about exercise.

    For the past year, I have been taking a gentle "viniyoga" class that is designed specifically for people with disabilities and chronic illnesses. We do primarily breathing and stretching exercises, mostly in a chair but sometimes on a mat or standing agaist a wall.

    The yoga exercises seem to help me with pain as much as or more than the exercises I get from physical therapy. (I kind of combine them in my daily exercise regimen.)

    An additional -- and unexpected -- bonus has been that I've lost 10-12 pounds. I have a feeling that if you are thin or close to your "ideal" weight, you wouldn't lose much if anything. In fact, it seems to me that if you build up muscle mass from the exercises, you could even gain a little weight, since a given volume of muscle weighs more than the same volume of fat. But I'm just guessing about that.

    I just know that yoga has helped me--and continues to help. But you do have to make sure you get into the right kind of yoga and get the right teacher. Some yoga classes probably would be too stressful for some with CFS or fibro and might cause problems.

    The good thing about viniyoga is that it's more individualized and gentle than other forms I've heard about.

    --Laura R.M.

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