Need article to bring to pain clinic Dr tomorrow-they dont think FM is real

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by fmfriend, Jun 1, 2014.

  1. fmfriend

    fmfriend Member

    I have an appointment with a pain clinic whom I have grown very frustrated with due to their lack of properly treating my FM, ME/CFS and severe back pain. Well I spoke to them on Friday confirming my appointment for Monday and the receptionist/assistant said they dont believe FM is a REAL illness!
    I couldn't believe her ignorance but I would like to bring something from the library here or another source stating the reality of it being a REAL illness. Goodness I felt like I was back in the 80's and even then I had several Dr's diagnose me with this DD and an attorney and judge ruled I am permanently totally disabled by this disease. It's taken my life as I once knew it away. I dont even mention the lyme disease because I know how ignorant people are about that. I want to go in tomorrow with the best indisputable research paper. Can someone please help. Thanks.
    Blessings~ Sally
  2. Willow77

    Willow77 Member

    http://www.anapsid.org/cnd/diagnosis/brainpain.html
    http://www.jneurosci.org/content/27/15/4004.short

    I don't know if these will help you but it was all I could find doing a quick search.

    It is a shame that anyone still believes this disease is not real. My HMO does believe that it is real but it is only after having pain for years for other disorders that they relented and put me on pain meds. I am now no longer using a walker or cane because of the pain although I still need a ramp because of the stairs. I still have a lot of pain but most days it is tolerable.

    I went to the pain clinic to get something stronger than Vicodin which didn't help anymore as the pain progressed to more areas of my body. I went through their program but when I developed a sensitivity a few years later to the pain med I was on, my, Primary MD changed me to the med I am on now as it would have been a 6 month waiting list to go back to the pain clinic. I will be forever grateful to that Dr. He moved away but as I am still with the same HMO my new Dr. continues with the same meds.

    I hope you can find some relief.
  3. IanH

    IanH Active Member

    Hi fmfriend,
    I am sorry to hear you have this all too common problem.

    Unfortunately there is no definitive book substantiating Fibromyalgia and many people do not believe it is a "Real" disease. By this, some believe it is made up but most who say this believe that the sufferer has identifiable pathologies leading to chronic widespread pain but it does no good to call it "Fibromyalgia". I myself doubt it is a single definable disease but it is definitely a pathology coming from many possible underlying disease conditions. It is over diagnosed, so many specialists are skeptical about the diagnosis.

    However people suffer from this condition and current thinking is that it is NOT a psychological state or disorder but that it is a combination of genetic, environmental and "life-event" variables.

    I am assuming the people you are seeing are medical specialists. If so they will be members of Medscape, or at least have access to Medscape, as I am.

    The best single source for information is Medscape. You need to be a member to access the data. What I have provided below is some of the more relevant papers for your consultants to access, read and consider. I have provided the URLs to the papers and video conferences.


    Medscape: On diagnosis, definition and treatment options.

    1. http://www.medscape.com/viewarticle/820613

    2. http://emedicine.medscape.com/article/329838-clinical

    3. http://emedicine.medscape.com/article/329838-treatment

    4. http://www.medscape.com/viewcollection/32999

    And here: (these are Continuing Medical Education papers)

    5. New diagnostic criteria pinpoints fibromyalgia (CME), Charles P Vega MD FAAFP

    http://www.medscape.org/viewarticle/821422


    6. And a medscape video here by World Experts: Fibromyalgia and the Brain: New Insights and Rationale for Treatment, Michael R. Clark, MD, MPH, MBA; Daniel Clauw, MD; Don L. Goldenberg, MD (CME)


    http://www.medscape.org/viewarticle/755787

    Here is a very recent paper on Mitochondrial Myopathy in diagnosed fibromyalgia. The point of this paper is that it shows that what we call/diagnose as fibromyalgia can have a clear cut identifiable pathology.

    Mitochondrial Myopathy presenting as fibromyalgia: A case report.

    Abdullah et al. Journal of Medical Case Reports 2012, 6:55
    http://www.jmedicalcasereports.com/content/6/1/55

    And this article, also referred by willow77 above
    http://www.jneurosci.org/content/27/15/4004.full.pdf+html

    Also note that Daniel Clauw, M.D. is the author of the already mention study using fMRI, by willow77 above.

    I suggest you print this out along with the URLs provided by willow77 and give it to the consultants when you see them.

    I can supply more if you want.

    Best regards
    Ian Hodgson Consultant Psychologist (Chronic Diseases)
    Last edited: Jun 1, 2014
  4. fmfriend

    fmfriend Member

    Willow and Ian, Thank you so much for your timely response to my request. I did referr to Medscape and found many educational articles. The difficulty I'm having is with their findings that opiode medications dont help with treating the pain associated with FM, ME/CFS, lyme disease, and back pain. I had been on a regimen of pain medication along with anti anxiety, nerve desensitizing medications and sleep, for over 20 years and was able to have a much better quality of life being more able to do activities of daily living which now without the meds. I am not able to do. When I developed Lyme Disease that really did me in. I had 5 major lyme rashes all at the same time and almost died. It made of course made all my conditions worsen. I was just beginning treating with Dr Jemseck when he was put out of business so could not acquire long term antibiotic treatment.

    I do treat myself with vitamin, herbal supplementation and a modified diet which helps to a degree but yet I suffer severe unrelenting pain. Fortunately I have an appointment with Dr Charles Lapp who has some articles written on this site and specializes in the treatment of ME/CFS and FM so Im hoping to be done with the pain clinic who has offered no medication but a suggestion for referral to a psychiatrist and on to real help soon.

    Thank you again for you help. I will let you know how it goes.

    Blessings, Sally
  5. ljimbo42

    ljimbo42 Member

    Hi Sally- I don't know where you live, but here is a link to the "center for disease control" in the united states, clearly identifying fibromyalgia as a disease.

    I have been disabled with both cfs and fm since 1989 and was on 130mg a day of morphine several years ago, for several years. I started treating my methylation cycle over the last year and it looks like I could be going back to work very soon.

    So possibly something else you might want to consider is treating methylation, I have had astounding results in the last year from treating methylation and my health continues to improve weekly.

    I was functioning at 10-15 percent and now I am at 35-40 %, and as I said I keep improving. My fibromyagia pain has dropped dramatically as well and I am walking 20 minutes every other day, cooking 3 meals a day, cleaning my apartment, and doing other things, daily.

    My experience tells me that the biggest mistake people make in treating methylation is using too low a dose of methylfolate.

    When I got up to 6.4 milligrams (6,400 micrograms) a day I actually FELT my methylation turn on and my energy doubled or tripled virtually overnight. Food for thought maybe? Best of luck to you! Jim

    http://www.cdc.gov/arthritis/basics/fibromyalgia.htm
  6. ljimbo42

    ljimbo42 Member


    Hi jaminhealth- I really like the saying you have in your signature,"The Glass is HALF Full, Change Your Mind, Change Your Life!!!!" I try to live by that every day and I'm sure that had a lot to do with my success in getting healthy so far.

    To the best of my knowledge there is no toxic level of methyl-folate known. I am taking about 10 mg (10,000 mcg) a day and feel better than I have in many years. What could happen, if you increase the dose too fast, is you could experience over-methylation, which is anxiety and restlessness.

    If you didn't experience overmethylation going up to 1600 mcg than I would go up to a higher dose at the same pace you did with the 1600 mcg. What I do is I keep some niacin on hand, not niacinamide, niacinamide won't work.

    Dr. ben lynch, is an expert on methylation recommends 50mg slow release niacin every 30-60 minutes for over-methylation. I take 20-30 mg of the instant release niacin if I need it for overmethylation and it works great.

    The niacin uses up methyl groups fast, slowing the methylation and bringing it down some, relieving any anxiety or restlessness. I have used niacin many times in the last year for over-methylation and it works like magic.

    I was taking 1200mcg folinic acid and 1600mcg methy-lfolate and 2500mcg methylcobalamin for 8-10 months and didn't get any benefits at all. When I reached 6,400 mcg though the energy went WAY up and continues to.

    I can actually tell you the day I broke through my mehylation block, I wrote it on my calendar :) it was that profound! I know of 3 other people that have recovered from cfs/fm and all three of them are taking 5-10 mg (5,000-10,000 mcg) methy-lfolate a day with methylcobalamin and some other supps.

    It's important to take methylcobalamin with the methylfolate or you can get methyl-trapping, which renders some of the methylfolate useless. It's never too late to get well- I've had cfs/fm for 36 years and have been disabled for 25 years-so it's NEVER too late.......... Good luck! All the best-Jim
  7. mbofov

    mbofov Active Member

    It's extremely important for anyone taking methylfolate and methylcobalamin to be alert for the symptoms of low potassium. Freddd of the Phoenix Rising board has written about this several times. He says that as the body starts to heal after starting methylfolate, it can increase the need for potassium as cells start to heal and work properly, which can lead rather suddenly to a potassium deficiency, which if severe enough can be dangerous. This happened to me. When I first started taking methylfolate 3 or 4 years ago, my energy picked up markedly within a couple of days, it was great (I had already been taking methylcobalamin for several years) and then a few days after that I hit a brick wall - felt horrible, began to think I might have to stop the folate, and it took me a day or so to remember what Freddd had written about potassium. I titrated up to 1,000 mg. of potassium a day and sure enough the horrible fatigue lifted, I stayed at that dose for a week or so and then went back down to 400 mg. of potassium a day, which I continue to take, as well as 1600 mcg. of folate. This is so important to be aware of, especially when taking folate in such high doses. I think many people have been unable to tolerate either Freddd's or Rich's methylation protocols because of the potassium issue and being unaware of what was happening, and instead just attributing the feeling awful to detoxing. Richvank eventually mentioned the potential need for potassium in his latest iteration of his methylation protocol.

    Having said all this, I'm really happy to hear how the high doses of methylfolate helped you so much. I may try increasing my dose. My problem is generally not day-to-day energy, it's crashing 24 hours afterwards. So even if I have energy and feel good, I still have to stop whatever I'm doing after 3-4 hours of light activity - otherwise I crash the next day. I don't know if more folate would address this issue, though I guess there's one way to find out :)

    Jimbo - how much methlcobalamin are you taking with all that folate?

    Mary
    RadioFM likes this.
  8. ljimbo42

    ljimbo42 Member

    Hi Mary-

    I am taking 500 mg potassium rate now, but I have taken 1500-2000 mg a day. Honestly though, I can't say that's it's helped me. I haven't noticed any improvement from it, but I have read that others like you, have.

    I have spent an enormous amount of time in the last year reading about methylation, so when I read Freddd's warning, I took it to heart and started taking potassium. I have found that when I feel fatigued now, like a crash is coming on, I can almost always pull myself out of it by going up on my methylfolate dose a little.

    Modulating my energy with the methylfolate is really kind of amazing to me. The only real control I use to have over it was to avoid physical activity, so It has given me a real freedom in that sense. One point that I am trying to make is that maybe by going up on the methylfolate, it can help you better manage your crashes as well.

    My fear is, now that my energy is up from 10-15% to 35-40% that it won't go up any more, I think that is only fear though and as my body further clears toxins and heals, improvements will continue.

    I am taking 5,000 mcg methylcobalamin (sublingually) with 10 mg methylfolate daily. My sense of what Rich has said about methylation and cfs is rate on the money, with the one caveat of much higher doses are needed, especially of the methylfolate. Best of luck to you Mary! Jim
  9. mbofov

    mbofov Active Member

    Thanks Jim for the info. It's definitely worth a try, upping the folate. I've been at the same dose (1600 mcg. a day) for about 4 years now (I think, 3 or 4 years, I can't remember)

    FWIW, I recently started taking thiamine, first 100 mg. and now 200 mg. a day after reading that high dose thiamine helped some fibro patients with energy. One woman was taking 1500 mg. It also helped with pain but more with energy (see http://www.prohealth.com/library/showarticle.cfm?libid=18187)
    I think I started with 400 mg. and it was too much - I felt wired and tired at the same time, and cut back to 50 mg. a day and then increased to 100, and had the same feeling of being wired and tired, and finally realized that it was causing my potassium to drop as well, so I upped my potassium and sure enough the extra fatigue went away and I still had a little more energy. So I'm working on slowly increasing the thiamine. One day I accidentally took 400 mg. and boom! severe fatigue for the next 2 days, had to go up to 1000 or 1200 mg. of potassium and the fatigue went away. So I'm now taking 200 mg. of thiamine and about 1,000 mg. of potassium and will try increasing the thiamine in a couple of days. To me the increased need for potassium is a sign that my body is working harder to do what it's suppose to do.

    So thiamine might help you with energy too. But just be aware it may cause potassium to drop. I don't have FM and it's possible that FM patients can tolerate higher doses of thiamine and that it may be more effective for them.

    But I will try increasing the folate and see how I feel. Maybe I'll do that next instead of increasing the thiamine. It would be amazing to modulate my energy with methylfolate -- I totally get where you are coming from!

    Best wishes,

    Mary
  10. Darrae

    Darrae Member

    I can't believe there are still people in this world who think Fibromyalgia and/or CFS is a "Belief System"! Go to The Mayo Clinic Website. Print out their findings on Fibromyalgia and CFS. It's where I've always gained most of my information. Who's gonna argue with Mayo Clinic may I ask? Good Luck!
    Dar
  11. mbofov

    mbofov Active Member

    Dar - sorry, but the mayo clinic seems to know nothing about CFS. Here's their recommended treatment for CFS (not a word about supporting the mitochondria, methylation, the dangers of exercise and post-exertional malaise, etc.)

    "Therapy

    The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines psychological counseling with a gentle exercise program.

    • Graded exercise. A physical therapist can help determine what types of exercise are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. If you're exhausted the next day, you're doing too much. Your strength and endurance will improve as you gradually increase the intensity of your exercise over time.
    • Psychological counseling. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically
  12. Darrae

    Darrae Member

    Google Diagnosis and Management of Patients with Fibromyalgia, click on this site:

    www.medpagetoday.resource.../fibromyalgia/...

    It contains a review by Christopher Gharibo, M.D. Medical Director of Pain Medicine, NYU
    It gives a healthy diagnosis and major information about FM. And a list of other sources.

    Then, google CFS medical Documentation..........click on pdf Myalgic Encephalomelitis/Chronic Fatigue Syndrome.

    Between the two sources you should have plenty of documentation to work with.