arrow26 Comments
  1. Jeanie Pochatko
    Jun 05 - 10:58 am

    This was very informative and well written. I look forward to hearing more from Tim in the future.

    Thanks, again, Cort, for all you do. I wish the English language had a better word to express how much I truly do thank you for keeping all of us so informed. Your work is invaluable.

    Jeanie

    • Cort Johnson
      Jun 05 - 11:31 am

      Thanks Jeanie and thanks to Tim for jumping in and digging this information up. I had no idea allodynia or central sensitization could have anything to do with muscle ischemia. What a fascinating connnection that is..

  2. Alex Young aka alex3619
    Jun 05 - 12:10 pm

    I have long been interested in reperfusion injury and ME. The reason is its associated with both a rise in free arachidonic acid (which can be converted to inflammatory eicosanoids) and this arachidonic acid is associated with an oxidative stress burst from the mitochondria, but when I was investigating this 10 years ago or so the mechanism was not known.

    It is also worth noting that stopping arachidonic acid from converting to eicosanoids usually prevents death by alcohol poisoning. Its the eicosanoids that typically kill someone who has consumed too much alcohol, inducing a massive inflammatory response. Alcohol causes arachidonic acid to be released from cell membranes, and once free it can convert to eicosanoids. Those with ME often cannot tolerate alcohol.

    If Julia Newton’s work on muscle in CFS is right, then it would appear the muscle in CFS is acidic after exercise, but alkaline at rest. This kind of study needs to be done for fibromyalgia, Julia Newton took muscle biopsies and tested them. Isolating the muscle for testing taught her things that were not easy to show otherwise.

    Alex.

    • Cort Johnson
      Jun 06 - 9:11 am

      Fascinating Alex – if I remember correctly, arachidonic acid or its equivalent is increased in ME/CFS? My alcohol intolerance goes up after I exercise; I assume that I’m whacking my system pretty hard with oxidative stress with exercise.

  3. Celeste Cooper
    Jun 05 - 12:14 pm

    Fabulous article Cort.

  4. Celeste Cooper
    Jun 05 - 12:25 pm

    P.S. I can personally account for, as well as what is reported by other patients, that Raynaud’s is very painful on rewarming, and that livedo reticularis , thought to have a sympathetic nervous system involvement, is alive and well in many FM patients. This study certainly brings these two elements together.

    Such a great explanation of the study. Thanks again. And welcome Tim.

    In healing and hope, Celeste

  5. Issie
    Jun 05 - 12:57 pm

    This article reminded me of an article I remembered reading recently on Regional Pain Syndrome, here’s the link:

    http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf

    Seems others are connecting this very thing. Reperfusion issues seems to be a big possibility and the connections to the autonomic nervous system – showing very likely.

    I have been recently using grapefruit seed extract and having some pretty amazing results with it. I found an article of a study done with this to help in pancreatic reperfusion issues. Here is the link. Thinking if it helps the organs that much – maybe, it will help the muscles and skin with those type of issues too. Since I do have POTS and FMS along with EDS – this is a big concern for me because I have PEM and lots of pain from EDS and autonomic nervous system disorders. The results seem very significant and may be of help to others. I’m using 5 drops in water in the a.m. Would like to hear if it helps others too.

    http://jpp.krakow.pl/journal/archive/12_04/pdf/811_12_04_article.pdf

    There was another article saying that Alpha Lipoic Acid helps in liver reperfusion issues. This is also known to help with neuropathies. Makes you wonder if reperfusion is part of the issue with the neuropathies that we have with POTS too.

    http://www.ncbi.nlm.nih.gov/pubmed/17259747

    Great article. Looking forward to more thoughts and ideas.

    Issie

    • Cort Johnson
      Jun 06 - 9:14 am

      You’ve got a trifecta! (POTS, FM and ED). Thanks for the suggestions..

      • Issie
        Jun 06 - 2:09 pm

        Ha!Ha! Yeah, and you can add MCAS to that too. So what would you call that? Quadruple trouble! (Also issues with protozoa and co-infections.) Lot’s of stuff.

        Just a quick note on the Grapefruit Seed Ext., I can’t believe how good I’m feeling with it. It’s been 3 weeks now and I’m well past the point of where things fizzle with me – where they will work for awhile and then stop. This is just getting better. I’m very encouraged with it. (It is a natural antibiotic, anti-viral, anti-bacterial, anti-parasitic and helps with inflammation. If it improves blood flow and helps with the immune system too —you are covering so many of the bases that may have to do with what all we have going on.)

        Issie

  6. Helle Nielsen
    Jun 05 - 1:01 pm

    Thanks for post!
    I will just draw your attention to this paper “Neuroinflammation, Neuroautoimmunity,
    and the Co-Morbidities of Complex Regional Pain Syndrome” http://www.rsds.org/pdfsall/JNIP-article-Cooper-Clark.pdf
    “Complex Regional Pain Syndrome (CRPS) is associated with non-dermatomal patterns of pain, unusual
    movement disorders, and somatovisceral dysfunctions. These symptoms are viewed by some neurologists and psychiatrists as being psychogenic in origin. Recent evidence, however, suggests that an autoimmune attack on selfantigens found in the peripheral and central nervous system may underlie a number of CRPS symptoms….
    Recent discoveries have helped to elucidate possible mechanisms for the initiation and progression of CRPS. In general, neuroautoimmune responses are determined by how infiltrating leukocytes react to autoantibodies, which bind to autoantigens located on the surfaces of neuronal and glial cell targets (Fig. 1). For a substantial fraction of adult CRPS cases (Kohr et al. 2011), initiation of CRPS may lie in a breakdown of immunologic self-tolerance, and the development of autoantibodies to the β2AR and M2R neurotransmitter receptors.”
    Please, do take your time to read the full arcticle, it is very interesting.
    All the best :-))

    • Marco
      Jun 06 - 3:21 am

      Fabulous paper Helle

      Neuroinflammation can explain a wide range of conditions previously described as ‘psychogenic’ or ‘medically unexplained’. They propose the following structural, functional and dynamic mechanisms :

      Infiltration of autoantibodies into nervous tissues (functional
      lesion)

      – Infiltration of leukocytes into nervous tissues (structural/
      functional lesion)

      – Focal sites of cytokine imbalance (functional/dynamic
      lesion)

      – Remote neuroimmune activation of glia (structural/
      functional lesion)

      – Breakdown of blood brain barrier (structural lesion)
      – Loss of inhibitory tone (functional lesion)

      – Excessive loop gain in neural circuits (dynamic lesion)

      – Thalamic neuroinflammation (structural/functional
      lesion)

      – Loss of sensory gating (functional lesion)
      – Synaptic conversion (functional lesion)

      – Thalamocortical dysrhythmias (dynamic lesion)

      – Distortion of a somatotopic map (structural/functional
      lesion)

      – Altered connectivity within the brain (dynamic/functional
      lesion)

  7. Julie
    Jun 05 - 1:21 pm

    Wow this report makes a lot of sense especially when a flare up causes sooooo much pain that no one can come near you. I also experience Reynards although my skin reacts to any change in temperature hot or cold can be very uncomfortable.
    I am really happy that have found this web site as often I feel I’m alone in the way my pain and fatigue affects me. THANKYOU

  8. Rosie
    Jun 05 - 2:44 pm

    An interesting article..one I will follow up on in terms of research. I developed very severe body-wide allodynia for the first time 19 months ago, 41 years into my ME. I had developed an ‘oddly presenting’ cat allergen out of the blue 7 months previously (the cat was eventually re homed). The odd reaction was not respiratory in any way…my skin would itch and prickle and sting, more at some times than others. I could still wear normal clothing (ok not totally normal..I’ve had sensitive skin from year ‘dot’ but sensibly chosen clothing never caused me any pain or irritation). Then suddenly, almost overnight, the pain changed to what I discovered was this dreadful, hideous, life changing thing called ‘allodynia’. I won’t go into great details to describe it other than to say I contemplated taking my life until I eventually had the roughest edges of it reduced by pregabalin, but as everyone with this condition probably knows, and to paraphrase The Verve, ‘the drugs don’t work’..well not well enough anyway. I sit here typing this feeling as though someone has poured caustic soda all over me..I also sit here draped in silk satin, it being one of the very few fabrics not to make the pain any worse than it is.
    My ponderings thus far (in addition to the presumption that maybe some sort of dorsal root ganglionitis is at the source of this condition) is that allergy may play a part too. Not least because the genesis of my pain seemed to occur in tandem with a peculiar allergic response which I’d never had before, plus it’s clear certain foodstuffs trigger worse pain, and of course Health Rising has also reported on the findings which link increased clusters of mast cells under the skin of people with allodynia. Therefore this report presents a whole new way of looking at this condition. Given that I haven’t experienced bad pain in the whole of my 43 years of ME until this recent occurrence, and still get little muscle pain (unless I’ve ‘overdone’ it..which frankly requires little effort) does this theory as detailed above tie into my history and presentation I wonder?

    I’d certainly love to hear any feedback from anyone who may be able to enlighten me. In all these years this is unequivocally the worst thing which has ever happened to me…if I can gain greater understanding to do things (or equally avoid things) which could have a beneficial bearing on this pain I would be eternally grateful.

    • Cort Johnson
      Jun 05 - 3:51 pm

      Amazing Floydguy – I really feel for you and hope you can find some way to get out of this…My girlfriend has allodynia on her right leg; it’s probably her worst symptom. I know someone else with major skin hypersensitivity..

      An interesting publication will be out soon on dorsal root ganglia, pain and FM…It may provide something of interest to you. I’m definitely looking into that area…Among other things I think the linkups are fascinating..

      Its amazing how the body can switch to a new state so quickly…Maybe it can switch back at some point.

      Good luck!

      • Rosie
        Jun 06 - 2:58 am

        Thanks Cort..I presume this reply was aimed at me, not ‘Floydguy’..or maybe both of us?…but I will await the publication you mention with interest..I just hope it may include ideas about better treatment, as what exists presently is far from acceptable.

        My neurologist says these things can ‘just go’ ..I very much hope this will..sooner rather than later. It hideous :(

  9. Anita
    Jun 05 - 5:08 pm

    thank you for this amazing article Cort! I sent it to all my govt contacts. so informative!

  10. Tricia Watkins
    Jun 05 - 10:28 pm

    I’m very glad to see that someone has finally taken up this subject. I myself have believed for many years that allodynia is caused by trigger points (knots in the muscles) which are tiny highly electrified areas in the muscle that interfere with the microcirculation. The severity of trigger points increases over time and they spread like the domino effect. When severe they can spread to tendons, ligaments, subcutaneous tissue and the skin, resulting in pain in all these areas. I myself suffered quite severe allodynia more than 10 years ago but once I started treating the trigger points and eliminating as many perpetuating factors as I could, my allodynia all but disappeared. I thankfully got my sex life back! I still have trigger points and believe that with fibromyalgia, one can never be completely rid of them unless something can be done about the changes in the brain and neurotransmitters that are perpetuating them. I keep my trigger points pretty much under control by addressing as many of the perpetuating factors as possible and deal promptly and manually with any that become painful. As for allodynia, I still have a few slightly sensitive spots on the skin over my worst trigger point areas and if I let things get out of control, my overall allodynia may re-occur mildly during the flare that eventuates.

    Interesting about the arachidonic acid and the eicosanoids, Alex, because one of the things that helped control the trigger points for me was the Zone diet . The author, Barry Sears, a biochemist, believes that his diet keeps the eicosanoids in balance (promotes good ones and helps eliminate the bad ones by reducing arachidonic acid). Other perpetuating factors I address by using bio-identical hormones (pregnenolone) and striving to keep my body pH neutral (I do this by using a balance of diet and physical activity but the diet needs to address one’s own metabolic type by using foods that change your pH in the way you wish.) I don’t take any prescription medication.

  11. Marco
    Jun 06 - 3:33 am

    Excellent article Tim.

    You’re spot on that the prevailing recent model of fibromyalgia has been based on the loss of central, top down inhibitory mechanisms that results in the ‘perception’ of widespread pain.

    Peripheral ischemia and recent independent findings that fibro patients have peripheral neuropathies suggests that that central sensitivity may be the result of ongoing peripheral pain rather than the cause.

    Given that ischemia is neurotoxic via a neuroinflammatory cascade, its plausible that ischemia could result in localised neuropathies. Both of which would feed back to enhance ‘central sensitivity’.

    BTW – as I understand it the classic tender points are being gradually phased out of fibro case definitions. It has been suggested that these points are also ‘tender’ in healthy individuals and the enhanced pain in fibro just make them more so.

    The involvement of autonomic dysfunction in micro-vascular constriction is also very plausible as the ANS seems to figure more and more in recent fibromyalgia and ME/CFS research.

    Oh – and welcome :)

    • Tim Vaughan
      Jun 06 - 6:31 am

      To all,

      Thanks for the nice words and interesting comments. One question that keeps on wandering around my mind is how does one “fix” the autonomic system?

      When I read the McGill University research article I noted that when the rats exhibited a “reluctance to exercise”, no one blamed it on psychological problems or lack of initiative. Too bad those rats didn’t have some medical doctors to advise them to go get some cognitive behavior therapy.

      timv

  12. Nancy Blake
    Jun 06 - 12:48 pm

    So many of the things I read make me continue to wonder why Les Simpson’s work on the role of non-deformable erythrocytes continues to be completely absent from these discussions. It is such a simple concept, and verifiable just by looking at micrographs of immediately fixed red blood cells. The function of the red blood cells is to provide oxygen and remove lactates from all the cells in our body. The red blood cells are very sensitive to changes in their environment, and respond with changes in their shape. Most red blood cells are biconcave discocytes – perfectly round, with a dimple in both sides. This shape is very ‘deformable’, easily curling up to pass through the tiny capillaries (the microcirculation) which are narrower than they are, to perform their function for the cells the capillaries serve. When the red cell population starts having a high proportion of non-deformable shapes – the irregular ones that can’t curl up so easily – then the cells served by the smallest capillaries start suffering from oxygen deficiency and a build-up of lactates. The tissues in the body most sensitive to this oxygen deficiency and build-up of lactates are the muscles, the cognitive areas of the brain, and the endocrine system. This provides a simple and clearcut explanation for the failure of the aerobic muscle metabolism and the early shift to use of the anaerobic system after only slight exertion in people who have ME//FM. It also provides an explanation for our cognitive problems and the dysregulation of our endocrine system, and, reading the above, seems also to provide a possible explanation for the oxygen deprivation in the extremities which, it appears, is a significant cause of pain.

    Occam’s razor, the principle that the simplest explanation should be given the most weight, and the concept of elegance in scientific research strongly suggest that these factors, the information provided by the field of hemorheology should be given a priority in our thinking about ME. When I read articles such as the above, and articles about immune system dysfunction, and the importance of inflammatory processes, it seems to me, again and again, that many apparent puzzles could be resolved if the information above were taken into account, as part of the whole complex set of systems involved in the pathophysiology of ME/FM

    During the early 2000′s, Les travelled in the US, Canada, the UK, as well as in Australia, and in his own country, New Zealand, visiting ME support groups and ME patients who were housebound, taking blood samples for analysis, as well as providing a sympathetic and supportive presence in the ME community. His work has been corroborated when, for example, he has been sent blind samples to analyse, and he has observed changes in the red blood cell population which correlate with when patients are in remission and when having a crash – in remission, the red cell population reverts to normal proportions of biconcave discocytes.

    His work has been brushed aside – for example, by small studies in which his protocol – the cells must be immediately fixed before being micrographed, in order to observe the shape changes- has not been followed. I don’t understand the thinking of researchers who prefer attempting to discredit the work of others, when incorporating it could be so valuable in actually helping solve the problems of ME/FM.

    Insofar as the blood flow problems, which are recognised in the works quoted above, are caused by a high proportion of non-deformable discocytes in the red blood cell population, the good news is that there are several easily obtainable things which can improve this situation. Les suggests 6 g per day of fish oil (the higher dose than usually recommended is necessary to have any effect), or 4 g per day of genuine Evening Primrose Oil (again, this was discounted by a piece of research – but analysis of commonly used ‘EPO’ indicated that of 11 products sold as EPO, only 3 were genuine), or pentoxyfilline, or Vitamin B 12 as hydroxocobalamin (most B12 is cyanocobalamin). Following these suggestions has helped many ME sufferers.

    I would strongly suggest that patients try out one or another of these products for six weeks, until they find one that works for them. Les has found that each of them can help a significant percentage of people who have ME – there are unanswered questions about why some don’t work for some people. But the level of desperation expressed in these comments does make me wish that more people had this information, therefore access to the possibility of some improvement in their symptoms by trying out these suggestions.

    And I really do wish that researchers would take these observations into account in the process of constructing theoretical explanations – it seems to me that they do provide a simple, elegant and verifiable contribution towards understanding all the processes which contribute to this terrible illness.

    • Tim Vaughan
      Jun 06 - 1:46 pm

      Nancy,

      Comments are interesting and appreciated. Besides your books on the subject, are there other sources that people can access to find out more details about this protocol? I personally have tried 6g of high-quality fish oil, etc. but I have never tried or heard of pentoxyfilline…. That prescription drug sounds like something I may follow up on. What causes the red blood cells to not be able to deform?

    • Issie
      Jun 06 - 2:29 pm

      Interesting!

      Some of us are addressing problems with Methylation Pathway genetic mutations and one of the things addressed with this is problems with Methyl B12. This is one thing that I’ve recently added to my mix.

      I’ve not heard or read this information before. Thanks for posting it.

      My doctor (Dr. Stephen Fry) feels that there may be issues with blood flow due to colonies of biofilm encased protozoa, bacteria and virus. He feels that these biofilms adhere to the walls of blood vessels and cause issues with blood flow and vein function. The biofilms becomes a hard – plaque like substance (think – tarter on your teeth) and would interfere with proper vein functioning in regards to dilation and/or constricting. My addressing my immune system and therefore breaking down this biofilm and causing the immune system to recognize these pathogens – seems to be making a huge difference with me.

      Issie

  13. [...] When Touch Hurts and Blood Matters: Getting at the Pain in Fibromyalgia and Chronic Fatigue Sydnrome…. [...]

  14. mozey
    Oct 09 - 6:49 pm

    I think i have this syndrome, have been to several doctors neurologists and rhumitoid doctors it is very frustrating that there is not a blood test or a real answer if you have it. i have been dealing with this for 3 years!!! off to Jefferson Neurologist tomorrow for hopefully more answers!!!

    • Cort Johnson
      Oct 10 - 12:42 pm

      Good luck Mozey!

  15. loretta powell
    Oct 31 - 1:08 pm

    Sorry I lost what used to be good communication skillskills. This theory workd with the frequent concurrence of migraines = vasospasm, vasospastic angina, and fibro. Please stay on this and follow it to the end

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