Finally figured out the cause of my "fibromyalgia"

Discussion in 'Fibromyalgia Main Forum' started by jbc66, Jul 30, 2008.

  1. jbc66

    jbc66 New Member

    Several weeks ago I posited the question on this board "Did anyone notice the onset of symptoms after they started a long run on SSRIs" I got several responses that they did seem to come on after SSRI therapy.

    One theory about Fibromyalgia is that it is a dysregulation of neurotransmitters. I also mentioned in that post that I have a friend who is a professor of pharmacology and when I told her I'd been on SSRI's for several years she just about flipped out explaining that no studies have ever demonstrated safe long term use of these drugs. That got me thinking and I started to do some research. NOT INTERNET RESEARCH, but reading books written by experts.

    I just finished reading the book Medication Madness: A Psychiatrist Exposes the Dangers of Mood-Altering Medications by Peter R. Breggin MD. I further investigated the symptoms of "SSRI Withdrawal" also knows as SSRI discontinuation syndrome and they are "severe flulike symptoms - headache, diarrhea, nausea, vomiting, chills, dizziness and fatigue. There may be insomnia. Agitation, impaired concentration, vivid dreams, depersonalization, irritability and suicidal thoughts are sometimes occurring. "

    These are the symptoms I had when I got really sick several years ago when I went off of prozac for the first time. Because I didn't know what was going on I was incredibly frightened and after a couple of months my skin started to burn. I learned from a few websites discussing the syndrome that buring pain and other paresthesia were part of it. If I had known nine years ago that my neurotransmitters were mucked up by four years on SSRIs what a difference that would have made. Countless expensive tests to rule out MS and Lupus AND a lot less stress for me!

    I am recommending that anyone on SSRIs or any other psychiatric drugs read this book. I got it from my local library so yours may have it too. That way you won't have to incur any cost. I feel compelled to post this because just finally having an answer in my case is extremely liberating. I can only hope that now that I am SSRI free, my brain will heal itself over time and eventually the symptoms of SSRI discontinuation syndrome will abate.
  2. bellydonna

    bellydonna New Member

    But what did you do re: the original reason for taking ssris?
    If I don't use them I am a mess

  3. jbc66

    jbc66 New Member

    I went through sixteen weeks of cognitive behavioral therapy and I learned how to breath deeply. I used to have such severe anxiety that it was crippling. It was so bad, I couldn't learn to drive until I was 29 years old.

    Wikipedia defines it "Cognitive Behavioral Therapy (CBT) is a psychotherapy based on cognitions, assumptions, beliefs, and behaviors, with the aim of influencing negative emotions that relate to inaccurate appraisal of events. The general approach, developed out of behavior modification, Cognitive Therapy and Rational Emotive Behavior Therapy, has become widely used to treat various kinds of neuroses and psychopathology, including mood disorders and anxiety disorders. The particular therapeutic techniques vary according to the particular kind of client or issue, but commonly include keeping a diary of significant events and associated feelings, thoughts and behaviors; questioning and testing cognitions, assumptions, evaluations and beliefs that might be unhelpful and unrealistic; gradually facing activities which may have been avoided; and trying out new ways of behaving and reacting. Relaxation and distraction techniques are also commonly included. CBT is widely accepted as an evidence- and empiricism-based, cost-effective psychotherapy for many disorders and psychological problems. It is sometimes used with groups of people as well as individuals, and the techniques are also commonly adapted for self-help manuals and, increasingly, for self-help software packages"

    If you cannot find a therapist or do not have the resources to cover therapy, look into purchasing "The Feeling Good Handbook" by Dr. David Burns. It has many of the same cognitive exercises used in the therapy itself.

    Remember, if you choose to go off of SSRIs (and I think you should after reading that there has NEVER been any evidence that SSRIs are safe and that in fact they may cause more harm than good -- really read the book I recommended in my earlier post, it's an eye openner) you will have to deal with some depression and/or anxiety during the washout period. Make sure you have a good social support network during such a period. I would read Breggin's book before you undertake it though as he he does job of letting you know what to expect and has some recommendations.

    Please note, I have no vested interest in any of the books I am recommending or the therapy. It's simply having been in bad shape and through all of this myself, I thought it good to pass this on.

    Best wishes to everyone!
  4. cookie1960

    cookie1960 New Member


    I never took any med stronger then a Tylenol or an anti-biotic before I got sick with FM. I started taking SSRI's and SNRI's after being diagnosed with FM and under the advisement of dr's to help with serotonin and pain issues.

    I do NOT believe that SSRI's cause FM.

    Sorry...just my opinion. FM has been around a lot longer then anti-deps.

  5. dragon06

    dragon06 New Member

    They certainly didn't cause my FM as I have had mine since I was 3. My mom also has FM and she never too SSRIs BEFORE she was diagnosed with it.

    We have both tried them through our search for help but neither of us take them anymore...there has been no change in taking or not taking them.

    I take lots of long term medications and I am aware that if I stop taking them I risk going through a withdrawal similar to what you describe but I still take them anyways because they help me now.
  6. jbc66

    jbc66 New Member

    I am not claiming that SSRIs cause all cases of fibromyalgia. What I am claiming that in my case, SSRIs mucked up my neurotransmitters. Most doctors that believe fibromyalgia is anything other than a psychosomatic illness believe it is a dysregulation of the nervous system. I stand by my recommendation that anyone taking SSRIs read Dr. Breggin's book.

    I wish I had the information before I went on Paxil back on 1994. I sure as hell wouldn't be dragging around this exta 120 pounds right now. Yes, I've gained that much on these drugs. When I took a three year break off of them I lost fifty pounds, which I put back on when I resumed the medications.
  7. jbc66

    jbc66 New Member

    benzos are pychiatric drugs that also affect the nervous system. Breggin descibes those in his book as well. My point in posting this is to help folks on this board become informed drug consumers.
  8. ljm405

    ljm405 New Member

    I have had two major depressions and went on SSRIs both times (this is the second round and chances are I'll not ever get off of them. Statistically this is the case with those afflicted with major depression). The first round I was on them for about five years -- Paxil, Wellbutrin (not an SSRI). I cut the Paxil down 10 mgs every month until I got to my last 10 mgs. Thinking that this is where I started, I stopped the Paxil completely. I had all the symptoms described as withdrawal and two weeks after thinking I had a flu that I simply couldn't shake, I saw my psychopharm who put two and two together and ordered me a month's worth of 5 mg. That put me right back on track and the following month I went off them altogether. I really felt like I was experiencing what drug addicts must feel ten times over. It was awful.

    In this last round of depression, I went on Lexapro and recently switched to Cymbalta because of my FM diagnosis two years ago. The Cymbalta definitely helped my FM symptoms. The truth is,if I hadn't been on these for depression I would be dead now. I think given a choice between suicide and FM, I'd take FM. I hate taking drugs and I could use a wheelbarrow to bring in my daily doses (I'm on all kinds of other stuff).

    But it's important to realize that there are a lot more reasons that docs attribute to FM -- it's not just neurotransmitters. Many people have suffered a shock -- physical or mental -- which for reasons unknown trigger FM. In my case I think it might have been a nasty fall down some concrete steps. There is a lot of evidence now that FM is a systemic condition -- misfires are not unique to neurotransmitters in FM. There is often a hormonal imbalance which is taking the latest research to the hypothalamus, the mother ship that controls all hormonal activity. There is a serious sleep deficiency with FM patients. My neurologist is working on this research himself. All people who have fibro have alpha intrusions all day (like healthy people) but at night only FM people experience these alpha intrusions. They never shut off. As long as this "background noise" is running in your brain, you never go into deep sleep (stages 3 and 4). This affects slow growth hormone production, which renews and helps balance substance P in the spine. It also means that your brain is pulling an all-nighter, every night, because you never shut down to renew your body. This contributes to the horrible fatigue and the sense that you've been stomped on all night by someone with spiked boots -- not to mention fibro fog.

    I appreciate you sharing your findings and your sources. I also think that depression is a complex condition that can be treated in many ways. But for the thousands of people who are skeptical of Big Pharma, and nevertheless have been helped by the anti-depressants that they have developed, I don't think one should throw the baby out with the bathwater. I've done a lot of research on FM and have never found it attributed to SSRI use. But more information is always good to have.
  9. marti_zavala

    marti_zavala Member

    This is a good post and very informative. I do understand that you are not stating that SSRI's cause all FMS. And I do understand that you feel that it did trigger yours.

    I think this is a very valid hypothesis. SSRI's do affect our neurotransmitters and neurohormones and if yours were pushed the wrong way, it certainly could trigger any one of these invisible illnesses.

    I also understand that there are people with both real depression and these invisible illnesses. For these folks, I hope they can find a good endocrinologist or experienced psychiatrist who will be able to sort through the maze of medications and effects.

    Dr. James Baraniuk, lead investigator of the current Georgetown Study in Washington D.C., states that SSRI's are the wrong medications for most people with these illnesses but that if you do take them, then take pediatric doses which work better than doses for normal people.

    Dr. Cheney also feels that these medications are not the right meds for MOST of us.

    Having said that, there are folks who NEED these meds. I guess the best thing to do is assume that you don't need them and try to use natural methods first then progress to the SSRI's.

    Good detective work.
  10. frosty77

    frosty77 New Member

    While there is a lot of interesting and true info, no med caused my FM and since FM has been around longer than most meds, I would venture to say that while meds may cloud issues, I don't think they can cause diseases.

    I've had FM all my life, I'm 47 now, and have only been on SSRI's for 2 years. Prior to that I never took any meds, even when prescribed.
  11. JewelRA

    JewelRA New Member

    I can't help but wonder about this, as I have been on Paxil for 16 years myself. I really dont' think the med CAUSED my FM, because I can remember symptoms as far back as my childhood. Also, I have several family members with FM who have never touched SSRIs. But I can't help but think that after 16 years on a SSRI it has probably started to hurt more than it does help.

    But I might as well not think about it, because I know I will never be off of Paxil in this life. I have tried more times than I can count, and like another poster said, "I'll take FM over suicide" anyday.
  12. monicaz49

    monicaz49 New Member

    Thx for posting this thread.
    My question is, is there any way to help repair these neurotransmitters?
    Interestingly enough....looking back i think i always had very mild cfs.
    Howeveeeeeeeeeer, after being prescribed PROZAC by a doctor for MILD anxiety my body literally went haywire! I was only on it for 7 days and i had a crap load of issues on it and when stopping it. It was literally insane. I can see how normal people can flip out on it.
    I was working full-time and a single mom functioning fairly well until this happened. I have never been the same since.
    Was prozac involved in my CFS explosion?? Yes. Was it the only cause??? I would say no...I think my body in some way was predisposed to this. There is a reason millions of other people not only tolerate prozac but actually do well on it.

    My 2cents.

    Great thread. Just wish there was some way to reverse the problemo.

  13. jbc66

    jbc66 New Member

    ...I read within the last year is titled "The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science" by Norman Doidge The review on Amazon reads "Only a few decades ago, scientists considered the brain to be fixed or "hardwired," and considered most forms of brain damage, therefore, to be incurable. Dr. Doidge, an eminent psychiatrist and researcher, was struck by how his patients' own transformations belied this, and set out to explore the new science of neuroplasticity by interviewing both scientific pioneers in neuroscience, and patients who have benefited from neuro-rehabilitation. Here he describes in fascinating personal narratives how the brain, far from being fixed, has remarkable powers of changing its own structure and compensating for even the most challenging neurological conditions. Doidge's book is a remarkable and hopeful portrait of the endless adaptability of the human brain."

    After reading this, I decided that it was time to move away from the meds, to try to let my brain heal itself. Like an earlier poster, when I tapered off zoloft I went through three months of depression. But after the washout period I've been fine.

    I had some anxiety when I started taking synthroid and cytomel but now that my dose is lowered. I feel great. I am now tapering off my doxepin. The night before last I dropped from 35 Mg to 30 and yesterday I felt like a zombie. Today I felt much better.

    I believe that if we know the side effects of the withdrawal are only temporary we can find the strength to get through them. But again, it is really important to have a support network. I am fortunate in that I am not working right now and I have been married to a very good man for 11 years. so I can have a day when I am a zombie, I won't lose my job (I don't have one!) and my husband is ready for it. I imagine that each week that I drop 5 mgs I will have a day or two where I feel like crap but will eventually bounce back.
  14. pinballwizard

    pinballwizard New Member

    HELLO PEOPLE. This is my first 10 minutes on this board. I am glad to have found you. I think I have CFS.

    It is funny, my Doctor told me today, that I should get on an SSRI.

    I thought about it this afternoon and began looking at SSRIs on I saw lots of symptoms of CFS of those taking SSRIs.

    That got me wondering... Perhaps I got CFS after stopping wellbutrin.

    Then as irony would have it, I found this post.

    I wish to posit that "getting off" wellbutrin caused it.
  15. gapsych

    gapsych New Member

    If what you say is true, I would think there would be a lot more people out there with FM/CFS.

    I am not saying that it isn't true in your case, as possibly the withdrawal was the stressor that started your DD. My stressor was my broken arm.

    AD's do raise the seretonin level in your brain and that effects your pain level. Low seretonin means more pain.
    People are often given ADs for chronic pain and it can help.

    ADs are not for everyone and some people with our DD are sensitive to these medications and can not take them.

    Other people have no choice but to be on ADs just as some people have no choice about wearing glasses unless you want to run into walls.

    CBT has been used by health professionals for years to convince us that this DD is a mental health problem. If it was a matter of the right outlook, I think most of us would be cured by now.

    Breathing/ relaxing exercises can certainly help people with their anxiety. I meditate.

    However many of us have nervous systems that are so overstimulated, these exercises may be of limited use without medications that can make these techniques more effective.

    Any book that makes such blanket statements sends out red flags as to their authenticity. It is not as simplistic an issue as these authors would like people to believe.

    Sometimes the answers are somewhere in between and what works for one person may not for another.

    Good luck.

    [This Message was Edited on 07/31/2008]
  16. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    I thought I would post the following for anybody who might want to consider microcurrent therapy for treatment of depression and anxiety. The following information comes from an ImmuneSupport article entitled <a href="">Low-Level Brain Stimulation Repeatedly Proven Effective for Fibromyalgia</a>.

    ""More information about the technology, including abstracts of around 40 additional scientific studies and hundreds of testimonials can be found on the company's website: <a href=""></a>. The Alpha-Stim SCS unit and supplies are available at""

    Regards, Wayne


    I have lived with diabetes for forty-four years, since the age of six. I have also been diagnosed with other autoimmune disorders such as Epstein-Barr/Chronic Fatigue Syndrome, Fibromyalgia, and Restless-Leg Syndrome. These syndromes have caused a multitude of symptoms such as insomnia, anxiety/depression, and a chronic overall sense of not feeling well.

    In April 2004, I underwent emergency surgery due to a spinal infection. While undergoing physical therapy after my surgery, my physical therapist suggested that I try the Alpha-Stim® SCS, because she believed it could help with some of the symptoms that were making my recovery from spine surgery more difficult; namely, insomnia, RLS, anxiety.

    She began treating me with the Alpha-Stim® for twenty minutes, two to three times a week I noticed a significant difference in my symptoms after only three or four uses. The most notable change was my ability to remain in deep sleep throughout the night. I began to notice how well rested I felt upon awakening. The disruption of sleep caused by Restless-Leg Syndrome also diminished.

    I also became aware that when I missed my physical therapy appointments and had not used the Alpha-Stim® for three or more days, my symptoms returned. I made the choice to purchase an Alpha-Stim® SCS for my own use at home. Many insurance companies will cover some of the cost, as mine did.

    I started by using it everyday, for one hour, the first two weeks, as recommended by the maker. After two weeks, I was able to reduce the number of days, as well as the length of time, to every other day for one-half hour, which is the schedule I am currently following. I continue to enjoy deep, restful sleep, with no annoying disruptions from RLS.

    Sleeping well at night allows me to feel well rested and more energetic upon awakening. My anxiety/depression levels have been greatly reduced, and I have an overall sense of wellness. I would highly recommend the Alpha-Stim®, for at-home use, to anyone who suffers from similar symptoms.
  17. gapsych

    gapsych New Member

    While the alpha stim may work, I do not know that much about it, I would think that the cost would be prohibitive to most people.

  18. Waynesrhythm

    Waynesrhythm Member

    Hi Gapsych,

    I did some research on the Alpha Stim therapy and decided to buy the Alpha Stim 100. The regular retail price is $895, but I was able to get a refurbished one from an authorized dealer for $580. It includes lifetime telephone support and a one-year product warranty.

    I've only had limited experience with it in the past week, but my initial results feel promising. It appears to be helping calm my neurological system. This in turn seems to be helping with sleep quality and to some degree sensory overload. I expect to begin working on some of the moderate pain syndromes in my body very soon.

    I can appreciate anybody having cost concerns, and I feel fortunate to have been able to make the decision to buy this. So far, my results have exceeded my expectations and feel it was a good decision for me.

    I should add that the authorized dealer I purchased this from also has a lease program where you can rent it for $120/month. All payments go toward the final price if a person chooses to buy it at any time. This might be a good way for people to determine whether this will work well for them without having to make the large initial outlay. I know that $120 is not an insignificant amount of money either, but thought I'd mention that it's an option.

    Regards, Wayne
  19. jbc66

    jbc66 New Member

    There is no denying that psycho social stressors exacerbate Fibromyalgia symptoms. That doesn't necessarily mean that is is a psychosomatic disorder, it just means that stress affects the body (everybody's body is affected by stress whether they have FMS or not). That said, if there is a type of therapy that helps one manage his stress, whether he has FMS or not, then why not try it or at least read up on it.

    Some one in an earlier post wrote something about a book making an irresponsible blanket statement. Are they writing about the first book I cited or the second? I think before anyone can cast criticism at either author, he or she should actually read the book and consider the full thesis. Again, both should be available at a public library so you won't even have to spend any money.

    In terms of docs believing one's condition is psychosomatic, you should immediately suspect that is a doc's viewpoint if he/she is trying to have you start SSRIs for your symptoms. Several studies has indicated that SSRIs do NOT help fibromyalgia pain or symptoms so why other than the doc thinking your symptoms are psychosomatic would he or she recommend the drugs?

    Finally, no one has ever shown that depression or anxiety is caused by a chemical imbalance, it is just theory. I am not saying it's an inaccurate theory. But docs, both psychs and GPs talk like there are scientific studies demonstrating this, when in fact it's all been marketing on the part of drug companies. Drug companies, that by the way, are making billions of dollars of this class of medication.
  20. gapsych

    gapsych New Member

    There are lots of studies that show the effectiveness of AD's and the tragic circumstances that happen when people go off of them. Also there are some studies that show that AD's can actually help the brain. There was a recent article posted about this. I would be glad to share these studies with you.

    As for reading the book, I have read the reviews and other sources on this topic. The first book relies a lot on pseudoscience and exploits peoples fear of taking medications.

    I worked with adolescents with emotional disturbances for twenty years and have seen absolute miracles. However, it may take many trials before finding the right medication at the right dosage. Monitoring of the patient is of the utmost importantance.

    If I do have the time, I may read the whole book. But I doubt it will convince me. I have already read the one about CBT. I found that CBT or therapy to deal with this disease was more effective once I felt better.

    I am not saying that ADs are the answer for everyone. Some people can not tolerate them.

    It sounds like your last reply was your point. To bash "Big Pharma". While there needs to be reform with "Big Pharma" that same reform needs to also be placed on the alternative options. There is a lot of money to be made by both industries.

    I will have to see if I can find some studies about long term use. I would rather take an AD, even if there may be side effects down the road, rather than go through the horrificness of depression.

    When doctor's prescribe ADs it is not because they think this DD is psychosomatic but because they see it as a biochemical, neurotransmitor problem. If they think it is psychosomatic, they would be recommending the CBT.

    GA[This Message was Edited on 08/01/2008]

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