Discussion in 'Fibromyalgia Main Forum' started by flossyfudleFran, Nov 10, 2010.

  1. hi all,
    i have had fibromyalgia and ME/CFS,for many years now.its been that long, that i no longer count the years.

    anyway,on tuesday this week,i went to see the rheumatologist who first diagnosed me with these conditions,as ive been having some new conditions that are showing themselves now.

    he said to me, that people who have fibromyalgia,most definately have under lying illnesses,that have yet to show themselves up.

    the last time he saw me,i was in a really bad way,very over weight and considering starting to use a electrical wheel chair,as i was,nt able to walk safely outdoors.

    all these years later it was discovered that amitriptyline was the cause of my weight problem,fuzzy brain ,and difficulties with breathing,plus the swollen tongue,and feelings of suffocating at night.

    but even after coming off amitriptyline tablets,and losing massive amounts of weight,the fibromyalgia pain remained in my body.

    this new appointment that i went to this week, was for a new problem that has come to visit me,and its to do with my fingers on the left hand.

    i am a right handed person,but have for the past 3 months been troubled at work while using the left hand.i also have the stiff spine,as always.

    the rheumy did hear a massive click,when i turned my head,so we know something is going on there too.

    ive had blood work done and both of my hands have been x-rayed.i get the results in 4 weeks time.

    the rheumy said that he believes i have wear and tear of the fingers,and by crikey i have been a grafter in my youth,so im not suprised by that.

    he was amazed that i still do my part time job,as was mentioned earlier because ,,,people with fibro often have illnesses that are developing ,and havent yet shown themselves up yet.

    i told him that what ive learned with my fibromyalgia is this.

    either the constant daily pain will make me go insane,or i can try to push the thought of the pain to one side (which is extremely hard to do),and focus on my job,and hobbies.

    ive chose to focus on my job and hobbies ,as im not ready to give in to this horrible condition just yet.

    anti inflamatory pills help,but do flare up my asthma, and make it difficult to breathe properly.so i limit myself to when i take those.which is only if the pain is in my neck,head and jaw.

    the fibro does still flare up, and crash my body, if i am stressed,and at the moment its the tax credits people who are making this happen to me,but thats another story,here in the uk at the moment.

    i know ive developed hay fever, and all the rest that goes with it,and now we are looking to see if i have arthritis of the hands.

    so this fibro and ME/CFS are not all in the mind.they are conditions that are telling us,something new is going wrong in our body,and most tests arent yet revealing what that something is.

    as regards why our pain signals are always switched to ON,my belief is that our brains could be affected ,as regards having migraine attack damage ,caused by having that condition for most of our lives.

    we know that in migraine attacks that our blood vessels become narrow,and we take medication to make them swell,so that the blood can get through to the brain properly.

    dont let constant daily pain drive you mad,and dont let people think you have a imaginary illness either.else that would drive you mad too.

    its a real illness that is saying,we have underlying conditions going on,and they need checking out.

    take care all,love fran.
  2. Mikie

    Mikie Moderator

    I am so sorry you have been having so many problems. Yes, most of us have all kinds of symptoms and other conditions.

    It's funny but once there is a drug, advertised on TV, for a condition, it is given legitimacy. Now that there are nonstop ads for Lyrica, most people now believe in FMS. Even docs who never believed in it are starting to come around. If the nonbelievers were in our shoes for one day, maybe even one hour, they would become believers. I have never wasted my time on nonbelievers. They bring too much negativity with them. We have enough on our plates without that!

    Love, Mikie
  3. Mikie

    Mikie Moderator

    BC, Lyrica, as well as neurontin, Klonopin, and Lunesta, all manipulate GABA in the brain. Brain chemicals can be really difficult to manage without a lot of side effects. I've been on Klonopin for about 10 years now and it works beautifully for me, so I feel blessed. The main advantage I see to Lyrica is that it seems to give credibility to FMS as a "real" illness. Sorry it didn't work for you.

    Gap, yes, I'm still doing the Guai. I'm so glad the GE has worked so well for you. I'm lucky the Guai worked for me. So many of us do have thyroid issues. I take only 25 mcgs. but it makes the difference between my having to nap every day and having to nap only when I'm in a CFIDS flare. What the Guai did was to allow me to get off Morphine and to concentrate on healing my CFIDS. I had to retire due to other things which have cropped up in the last year. I waited too long to stop working. I enjoyed it and who can't use more money? Still, it's a HUGE relief not to have to worry about working when I'm tired.

    Love, Mikie
  4. BeiYin

    BeiYin New Member

    Once symptoms have been given a name then the health system 'knows' what it is and then when the treatment with medication and other manipulations does not eliminate the symptoms, then the opinion is established that there is no cure for this disease. What society has done with those people who first said that the earth is round and NOT flat? We know this but what does it tell? Once a certain mindset is established, then this is part of the common view and any information that is different will be rejected.
    I made my own experience with this fact when I tried to share in so called 'support groups' that I healed myself from Fibromyalgia. I was kicked out of several groups, not even being able to give details. So I gave up writing about it. At my Web page where I have reported about my healing process and what I have done, there are about three thousand visitors daily and it surprises me not anymore, that there are no responses at all. Since about seven years! People are all looking for a quick fix and when they are told that they need to engage themselves, taking self responsibility and getting out of dependencies, then they are disappointed and reject everything I have written.
    Feeling as a victim and giving the fault for ones disease and problems to outside conditions is the usual behavior and being told to look for the cause within themselves is not wanted and the established system does not give any advice like this.
    As long disease is not seen as a challenge and part of ones *growing* process, to that one relates in a positive and creative way, - indeed, there will not be any 'cure'. I had envolved myself in this learning, healing and growing process and so I could heal myself, - this happened now about seven years ago and no symptoms have been coming back! After this I had an inguinal hernia and I rejected to be repaired by surgery and healed myself. But that's another story... I have also made a Web page about it. You will find it if you search for it.
    (I'm not selling anything!
  5. Mikie

    Mikie Moderator

    That FMS often "travels" with other illnesses. So many who have MS, lupus, Lyme, CFIDS, etc. also have FMS. I know that there are some who have what they call, "primary FMS," but I think they are rare. I also think they may have an underlying illness which hasn't presented itself yet.

    With the help of some of our wonderful and generous members here, I have connected the dots and believe that I may also have Sjogren's Syndrome. Again, no one knows what causes it and there is no cure. Another "mystery illness." It takes, on average, 6 1/2 yrs. to get a diagnosis when one has it. My new-technology eye test was indicitive, but not definitive, of Sjogren's. It is a brand new test which may help with diagnoses for those with it.

    My doc always does a sed rate and she will add an ANA test this time. I don't know whether she will go further with the other tests. I have co-pays on some tests and my HMO/PPO won't pay for some things. As with my FMS and CFIDS, we will likely just treat this empirically, symptom by symptom.

    With FMS, that's about all we can do. As I mentioned above, the Guai treatment has worked well for me but it's not a perfect treatment. Also, even though I've read Dr. St. Amand's book and understand his theory, I'm not sure the Guai works for the reasons he theorizes. Still, for me it works and that means a lot.

    Our illnesses call for lots of research on our part and understanding docs who will help us. This website is where I learned of everything which has helped me. It is invaluable in treatment and recovery.

    Love, Mikie
  6. ellikers

    ellikers New Member

    New research into chronic pain conditions is supporting that they are mainly issues with our central nervous system, our systems get messed up and brains get trapped into pain loops.

    The prominent pain doctor in my area (that is at the clinic where I see an NP) dislikes the term "fibromyalgia" because he says it doesn't accurately describe what's going on; he's prefer it to be called "central nervous system pain sensitivity syndrome" or something to that effect because that actually describes what's going on in the body. The issue isn't really the skeletal muscles (what "myo" refers to); it's our central nervous system and it's misfiring.

    Like Mikie mentions FMS is associated with other illnesses/syndromes,that makes sense to me because different types of dysregulation and misfiring are probably associated with all types of different sets of symptoms and conditions ... and these are all related and similar because there are similar processes going wrong, and have somewhat different "expressions" in different people.

    The reading and learning I've been doing about this is radically reshaping the way I think about chronic pain and bodies in general for that matter.

    Resources I recommend:


    "The Brain that Changes Itself" by Norman Doidge (info available here: http://www.normandoidge.com/normandoidge/MAIN.html )

    This is really new work that is not only helping people, but is backed up by scientific research as to what is actually going on in our bodies and brains.
  7. Mikie

    Mikie Moderator

    Thank you for the link and book recommendations. I just visited the website and found it very interesting. I've looked into brain plasticity a lot and research is revealing just how plastic and resilliant our brains are. Old dogs CAN learn new tricks.

    I've always used prayer, meditation and brain wave CD's to help with my healing. Now, I realize that when I used reading and TV to distract myself from the pain, I was actually training my brain to focus on more normal activities, thereby prohibiting those brain areas from pain looping. Amazing!

    I'm going to Amazon to find the book. Thanks again.

    Love, Mikie
  8. ellikers

    ellikers New Member

    I was really thinking you would find that interesting! :)

    It's really amazing information and I'm completely geeking out over neuroplasticity. I feel like pain treatment can be completely revolutionized to be so much more beneficial with this work.

    I went to conference earlier this year on this exact topic (which is where I got the book recommendation) and I'm gradually summarizing the information in a different post called "new research and treatment suggestions" I just bumped it up on the board.

    I'll work on my next "installment" this weekend.
  9. Mikie

    Mikie Moderator

    Scientists have know about this for decades but have not used the brain's amazing abilities in practical applications. Fifty-four years ago, I had a third-nerve injury to my brain from a bad concussion when I was struck by a car while riding my bike. It left me seeing double. We found a wonderful eye doc who used "visual training" to work with me. I sat before a screen doing exercises like lining up a circle on one side of the screen with a line on the other until the line disected the circle. Eventually, I was seeing just fine because other areas in my brain took over the functions previously performed by the damaged part. We see with our brains; our eyes are just the lenses.

    Strangely, my daughter had the same injury from a fall at school when she was ten. She went to the same doc and her results were as good as mine. At the time, most medical docs looked down on this treatment and considered it voodoo medicine. Well, results speak for themselves. My present eye doc says a lot of medical docs still feel the same about the treatment. Perhaps this prevailing bias is why so little progress has been made by utilizing the brain's ability to be so versatile. Even when one entire hemisphere is destroyed, the other will eventually learn to take over the tasks the other side used to do.

    Thanks again. This is fascinating.

    Love, Mikie
  10. nanannan

    nanannan New Member

    I ran across this saying just yesterday -- "Wnen all you can do is all you can do, then all you can do is enough."
  11. hi all,

    well i went to get my results from the hand xrays, that were done at the hospital,and i was told i have wear and tear with age.he said its osteoarthritus,and discharged me.

    im to take anti inflamatory pills for the pain,or apply heat rub cream.

    he did ask how my fibromyalgia is doing,during this very cold weather here in the uk.and saw that i was extremely stiff in my body.as is the case with the fibro.

    i was just told to continue to do, whatever it is that im doing right now,which is gentle stretching of the arms,daily.as in his words,,,,

    "when i saw you many years ago you were very poorly."

    he was a nice man,but if my memory serves me well,at the time of him seeing me many years ago ,he said nothing was wrong except the ME/CFS and fibro.

    and now im told i was.. very poorly.i was told i had wear and tear in 6 lumber discs back then,so i suppose thats the osteoarthritus too.

    so my pain isnt all in my mind...i always knew it wasnt.but some other people along the way made me believe it was.

    im so glad that i didnt give up on myself,and let those people tear my very soul in two.i knew there was a real reason for my being in such terrible pain.

    take care all,love fran.
  12. ellikers

    ellikers New Member

    That's awesome! So glad the visual therapy worked. That's right in line with the book I'm reading ... some of the chapters cover such types of therapy for sensory problems. I'm reading the very lengthy appendix section of the book now. It's still super fascinating.

    So strange the science/medicine has been so resistant to incorporating understanding neuroplasticity into how we think of the brain and body and help people heal. The book explains that much of science was in a state of believing the brain (and rest of the central nervous system) was like a processing machine and therefore couldn't grow or change once it was developed, but that it would just deteriorate and wear out like a machine (such as growing old and our losing our memory, etc.). Neuroplasticity was a "hard sell" and now it seems to becoming more accepted and prevalent in scientific communities.

    This reading is really backing up my belief that much of our experiences with chronic pain and illnesses can be changed and recovered. I'm currently thinking that there are clearly underlying causes for what creates our pain and illness symptoms, but that much of it can be solved if we understand the brain and nervous system better, and give it more credit for it's role in all this "stuff."

    The focus would then be on
    (1) helping someone out of crisis (no one should be in serious pain)
    (2) treating underlying causes (deficiencies, adrenal fatigue, pathogens, allergies, etc.)
    (3) rebalancing the body ... giving it the space and required nutrition, etc to heal and then working on
    (4) retraining our brains and bodies to work differently, whether that's physical routines --such as stabilizing muscles from working the wrong way (such as my constellation of trigger points) or visual therapy, increasing our movement and mobility, etc. -- and mental/emotional routines and restructuring our thinking-- interrupting the "pain loop," etc.
  13. Mikie

    Mikie Moderator

    I like your proposal for treatment. Getting someone out of crisis as the number one focus is really important. In the beginning, I did take Morphine for my pain. It got it to the place where I could tolerate it. I instictively know, though, that this was not what I wanted for the rest of my life. With my pain out of crisis mode, I was able to sit at my computer and do some research. That's when I found this wonderful place where I learned more than I ever could have on my own. Every treatment which has helped me is one I first heard of here. I was lucky to have docs who respected my research and help me with treatments.

    Treating the underlying causes or symptoms becomes the next step because if we can eliminate them, or treat them, it stops a lot of the chaos that is happening in the body to produce the pain. The kind of pain which we have, other than from the underlying conditions or injury, is actually chaos in our brains. Our neurons misfire and overfire, sending out pain signals. I think that is why it was so powerful for me when I just told myself (my brain) that the pain wasn't real. By relearning my response to the pain signals, I think it weakened them. BTW, this type of response doesn't work when one is in Step One above--crisis. One has to be at a lower level of pain in order to get this to work. Once it works on lesser pain, one can use it on greater pain. I do believe it retrains the brain and stops the feedback loop of chronic pain.

    Balance is really important too. Most people today are constantly in "survival mode." The economy, politics, and constant bombardment of info overwhelm us. We have to learn to take the time to get our lives back into a more realistic balance--a healthy balance.

    I think some resistance may come from those who have been subjected to the "if you are sick, it's because your thinking isn't right" response from loved ones and medical professionals. How many decades have women been told by doctors that we are just depressed when we turn to them for real medical problems?

    Brain plasticity and retraining isn't this "wrong thinking" response. It is entirely different and does not blame the patient. It's simply the discovery that our brains are a powerful tool in helping us heal. I'm so glad that science and medicine is taking this seriously. It's another tool, a very powerful tool, in our toolbelts when we fight to get well. I have always likened fighting our illnesses to fighting a war. One doesn't vanquish the enemy with guns alone. One fights a war, especially one with such high stakes as ours, with every weapon and strategy which helps.

    Thanks so very much for keeping this on the board. It's really important information to help us.

    Love, Mikie
  14. IanH

    IanH Active Member

    There is always a reason for the pain. The immune system is a complex generator and amplifier of pain.

    Post operative neuropathy is a good example. A patient has an operation on an injured knee. After awakening from the anaesthetic he complains more about pain in his shoulder than in his knee, convinced that he was badly handled during the op. MRi scans reveal no injury to the shoulder. "It must be a psychologically generated pain as a consequence of being under the knife"
    Two days after the op the patient recalls a small injury to the shoulder several years before while playing football. Not severe enough to show up on X-ray or MRI. After 5 days the pain begins to subside and is back to normal in two weeks.

    A patient with FMS goes to a physiotherapist to begin a graded exercise program to raise her fitness and hopefully rely less on the opiate drugs she has been taking. Every time she stretches her back sideways her legs and feet increase in pain and she has muscle cramps in her feet. The Physio therapist pulls back on the exercises so that they are a more gentle progression but as soon as the exercise level is increased the pain increases, usually the following day. It seems that stretching muscles and tendons like this trigger pain. In a person with Fibromyalgia this is true.

    In both of these simple examples the immune system is reacting to a change of state - it is alerted to the change and sets up an inflammatory reaction. Why? Because the immune system in a person with ME/CFS and FMS is hyperalert and generates an abnormal pain amplification. Nothing at all to do with the mind or depression or somatoform disorders. we dont have to have osteo-arthritis, or ankylosing spondylitis - just the regular bumps and bruises accumulated over the years. Of course Osteo-arthritis will cause amplified pain too in someone with ME/CFS and FMS.

    It is only now we are learning that these illnesses are a serious immunological dysfunction and there is plenty of evidence and for any physician to not know that would be their admission of ineptitude.
  15. Mikie

    Mikie Moderator

    This new research isn't saying there is no reason for the pain. Quite the contrary, it is the overresponsive reaction of the brain which can increase pain. What may be a small ache to a "normal" person can be amplified into intense pain to someone with FMS/CFIDS.

    The reason for pain is to let the person know that there is an injury or something wrong. "Pain with no reason" refers to amplified pain which is not the normal response to injury or something wrong. There is a reason for it--the pain loop in the brain--but it isn't the same thing as normal pain.

    If one can interfer with this hard-wired pain loop, it may be possible to retrain the brain to deal with the amplified pain without drugs. It's not the cure, the base reason, nor the one answer to our pain, but it may be promising to help us deal with it.

    Often, tests do not reveal inflammation in either FMS or CFIDS. These illnesses, as well as many others, do involve the immune system but as yet, no one seems to have the answers as to how they are related or why. Dr. Cheney has a good paper on how PWC have unbalanced immune systems. If we did understand the whys and hows to all our questions, we would likely be on the way to a cure. As it is, we are still groping in the dark. Any new research or info is welcomed by me because it has been my only means by which to heal. I'm not cured but I sure am better than I was.

    Love, Mikie
  16. IanH

    IanH Active Member

    Hi Mikie,

    Tests do reveal inflammatory response in FMS and ME/CFS. There is a marked elevation of Il-1b, Il-6, as well as TNF-a and CD14 and possibly IL-17f. RNAse-L is fragmented and TLR4 is seriously elevated. Among other markers these indicate an immune inflammatory response. You won't pick this up on typical blood tests of inflammation because the gross serum test does not show up the alteration of these proteins. You must look at the mRNA activity. To test for these immune markers is expensive. Most of the evidence for CNS dysfunction is via fMRI and this only tells us that the pain response is abnormal in the nervous system it says nothing about its origin. No one has identified an abnormal "pain loop".

    I used to think of it as amplified pain but I think this analogy is misguiding. The immune system is creating a situation where felt pain is elevated but I do not think that the elevation is neces sarily in the brain, it is at the site of the pain or near to it. It is the immune response which is amplified or elevated. I, among others, believe that a similar inflammatory response is responsible for some Alzheimers progression. (that, of course, is in the brain, but it is still immunological).

    Of course you can dull the pain using analgesics but even drugs such as buprenorphine, acting soley on opiate receptors don't tell us anything about the source of the pain. They "block the CNS response to the pain". I think this is also why neuropathic pain drugs such as Gabapentin work with FMS. If it was an abnormal pain-loop you would not expect them to work. The drug colchicine which increase the release of the pro-inflammatory cytokines IL-1b and IL-6 causes increased pain in many people. It is a drug used to decrease a different type of inflammatory problem in gout. The point is that it increases pain via the immuno-inflammatory cytokines.

    I think we will see a lot more research done in the coming years to show how much the immune system is involved in generating or modulating pain. I am not saying that the brain cannot amplify pain. Anxiety is one way to increase pain but in FMS and ME/CFS this is secondary, just like depression is secondary.
  17. Mikie

    Mikie Moderator

    Thanks for your info on the inflammatory response. If newer research is turning up an inflammatory response, which was not available with the "usual" tests, it can only help us to deal with our illnesses.

    GABA is thought to reduce pain by slowing the overfiring of the neurons which send out the pain signals. I've been on Klonopin for more than 10 years and it has helped tremendously to reduce the pain. There was a study done which agrees with my own experience with Klonopin.

    Studies of FMS patients turned up "Substance P" in the spinal fluid. This was thought to be part of the "pain loop" which amplifies pain. It seems to me that if neurons are constantly sending out pain signals, the brain will become hard wired for chronic pain.

    I think there needs to be a LOT more research before we can begin to truly understand our illnesses so we can start to treat them with more than the bandaid approach, which is about the only thing we have available now.

    Our illnesses may turn out to be like cancer. There isn't just one breast cancer or prostate cancer. There are many of each and they call for different treatments. Cancer, like our illnesses, involve the immune system. One thing I am glad to see is that the medical profession is paying more attention to keeping a healthy immune system. Unfortunately, many with our illnesses may be genetically predisposed to them.

    Again, thanks for your input. I appreciate it.

    Love, Mikie
  18. IanH

    IanH Active Member

    Yes Mikie, I am sure you are right. There will be more than one type of Fibromyalgia. I think fibromyalgia is a symptom of an underlying illness, maybe a number of different illnesses. Particularly the same illness that causes CFS. For many with CFS have fibromyalgia.

    Substance P, a neurokinin (or Takykinin)is regulated by the immune system cytokines. It is one of the first neuropeptides to be discovered that links the immune system with the CNS. A number of cytokines are known to initiate the elevation of substance P, which as you say is correlated with increased pain. However attempts to block the neurokinin 1 receptor (substance P receptor) using antagonistic drugs does not seem to reduce pain. So it is complicated alright.