arrow22 Comments
  1. sandy ruffin
    Jul 28 - 5:20 pm

    I think this fella is full of it. I contracted fibro/ibs/tachycardia within hours of exposure to toxic chemicals in a home product. This particular issue is not confronted by this website.

    • Cort Johnson
      Jul 28 - 5:24 pm

      We don’t have a lot on toxic chemical exposures and FM/ME/CFS etc. As someone who has had to battle chemical sensitivities for over a decade – that’s unfortunate In fact we have almost nothing – and could use some help there if an interested blogger is out there. An interview with Dr. William Rea is planned :)

      • Tricia Watkins
        Jul 28 - 9:36 pm

        Surely if it is stressful to just stand, image what toxic exposure would do to the functioning of the ANS. (The explanation for this goes down to the level of the mitochondria and the CYP 450 enzymes that detoxify the body. Both cortisol and these enzymes make demands on pregnenolone production). Dr Martinez-Lavin cites infection as a cause but surely this is just anther environmental stressor as opposed to internal stressors. The most important point being that the weakness to succumb was already there. It has been documented, at least in FM, that we have dozens, if not 100s, of SNPs (polymorphisms) in common. Kira brought our attention to the COMT gene in the first part of this series. This is a very important gene for us as it deals with dopamine metabolism. Dopamine competes with adrenalin for its production which would explain low dopamine levels in the illnesses brought about by an overactivated SNS. We also have a serotonin transporter polymorphism which is why we have problems with mood, sleep and digestion. I firmly believe that genetics play a very major role and that gene expression varies greatly amongst our common polymorphisms, resulting in different symptoms in each individual ( hence the sub-sets). The fact, for example, that studies have shown that other members of a family of a person with FM also have the same COMT polymorphism but with a different expression, leads one to think that it may just be hereditary after all.

        • Cort Johnson
          Jul 29 - 6:02 pm

          Looking forward to learning more about COMT. I’m pretty sure its been implicated in ME/CFS as well.

  2. Jan
    Jul 28 - 6:57 pm

    Cort, you mention that high blood pressure is “almost never seen” in ME/CFS. Despite it’s infrequency, can you direct me to any
    information or resources about HBP in ME/CFS?

    • Cort Johnson
      Jul 29 - 6:03 pm

      I don’t have any. I must say that I’m sure that it occurs given the amount and variability of autonomic nervous system problems in ME/CFS and FM, if not the heterogeneity in the disorders themselves.

    • Jan
      Jul 29 - 6:34 pm

      Thanks Cort. I will continue to search as I tend toward high blood pressure. I’d used caffeine, and still do a bit, to function till the blood pressure issue caught up with me!

      Thank you too for this website – I often gain insight and hope from the information you provide and so appreciate that!

  3. Claire
    Jul 29 - 7:46 am

    This makes a lot of sense to me, perhaps since it fits my particular case of ME/CFS. I have low blood pressure and dysautonomia issues such as orthostatic intolerance, common to ME/CFS. I have had the tilt table testing done plus additional autonomia/syncope workup done by a cardiologist in which they tested for things such as alpha and beta adrenergic sensitivity, intrinsic heart rate and catecholemine levels while undergoing tilt testing and cardiac blockade. I had a few abnormal results one of which was decreased alpha adrenergic sensitivity, exactly what this article is talking about. My alpha activity test itself was normal. Basically when they injected me with phentolamine (after performing a cardiac blockade using atropine and propanolol, then starting phenylephrine) my BP didn’t respond as it should have. It was reduced, or blunted.

    I wish all ME/CFS patients could get this level of testing done and then we would have a lot more detailed information about ourselves and wouldn’t have to guess or assume that we might have these issues. I live in Canada and was very fortunate to be able to get into the Syncope/Dysautonomia Clinic at the Hamilton General Hospital via Dr/Hyde. Plus it would give more credence to theories expressed in this article and would go a long way to educating people (like physicians) about this illness. I try and get every test I can possibly get done and now have a binder full of evidence backing up my illness that I can carry to to new doctors for show and tell :)

    Claire

    • Cort Johnson
      Jul 29 - 6:05 pm

      Thanks again Claire for sharing your experience. The autonomic nervous system is something that the medical community is only slowly getting a handle on.

      This was fascinating: “one of which was decreased alpha adrenergic sensitivity, exactly what this article is talking about”.

      I wonder if the SNS is turned down if the adrenergic system will adjust back?

  4. Julie Saunders
    Jul 29 - 8:24 am

    I hate to be the “odd man out” here but: as I have mentioned before, I have been taking Vyvanse for several months now which has increased my pulse rate. More than this; Vyvanse controls the norepinephrine in the brain. As a result of this treatment my: pain, fatigue, sleep disorder, bipolar and executive function problems have literally disappeared.

    Again, as I have mentioned, I was disabled by these problems to the utmost degree. I was unable to read anymore as I could not absorb information due to the executive function problem. I have been reading every one of these Health rising posts and even taking notes along with anything else significant on the internet.

    Dr. Martinez-Lavin has brought forth information in this article that is the most identifiable to me of all. As a child I grew up with severe IBS. As a teen, I found out I had low blood pressure. People in my family (myself included) tend to have almost too much energy, sleep problems, difficulty gaining weight due to stress and disorders involving norepinephrine.

    It wasn’t until the FM took over that my energy went way down and all the other problems continued to get much, much worse. I have been searching for an answer as to why the Vyvanse has worked so well. I do believe what the good doctor is working on is right along those lines. I’m no doctor and I certainly don’t presume to know all but there is a reason why I went from a disabled person to a completely healthy, energetic and capable human being again.

    I do, of course, understand that there is now more damage that has been done due to my years of sitting, laying and literally no exercise of both my body or brain. This is why I continue to read and take notes. I am now: doing stretches and exercise, changing my diet and taking supplements to further heal my body and mind. None of this would be possible though if I hadn’t started on the road to recovery by taking the Vyvanse which, to me, is obviously working on the problems that have been there for a lifetime.

    • Cort Johnson
      Jul 29 - 6:11 pm

      That’s amazing – and congratulations!

      For those interested in Vyvanse – check out a blog we did on it last year – http://www.cortjohnson.org/blog/2012/12/28/26/

      • Betsy
        Jul 30 - 1:39 pm

        I don’t see how stimulants can work long term, what with our problem of post exertional fatigue. Seems you’d be playing with a loan shark so to speak.

  5. Gijs
    Jul 29 - 11:07 am

    SNS overactivation is the key problem for ME! But what drives this overactivation? That is the big guestion. Compensation, infection, defect? I think the PNS is defect, that is my view for almost 2 decades now.

    Cort, can you ask this doctor what causes this overdrive in his view? Thanks!

    • Cort Johnson
      Jul 29 - 6:13 pm

      Good idea Gijs…..

      I’ll bet you are right – I’ll bet it is defective PNS…the vagal nerve

  6. Cynthia
    Jul 29 - 12:41 pm

    Wouldn’t it be great if we could all get genetic testing to see for certain which CFS subset we fall into? Then we would know with more certainty where our weaknesses are, which medications, herbs, supplements would help. It could tell us what to avoid as well, perhaps help identify nutritional recommendations for each individual, some way to work around defective genes. I love being able to get on a website like this and finding someting new to try. Since different things work for different people, genetic testing could be a way to figure out what works for the individual, and should save money by not having to spend it on things that probably won’t work.

  7. Sharon
    Jul 29 - 5:36 pm

    Julie Saunders
    That is absolutely amazing about the Vyvanse having had such a profound positive effect on your fibromyalgia symptoms. It does seem to correlate well with this article and opens up many questions and possible avenues to explore. Thanks for sharing!

  8. anonymous
    Jul 30 - 2:00 am

    I don’t know if you’ve covered changes to the endothelium of blood vessels or arterial wall stiffening. One of these studies cited another which says stress and the catecholamin(adrenal hormones: dopamine, epinephrine & norepinephrine) also affect the endothelium. I had not read that FMS patients would tend toward low blood pressure. I would suppose high blood pressure and arterial stiffening would be an unfortunate combo pack eventually.

    https://www.healclick.com/posts/10727-fibromyalgia-and-endothelium-changes-including-wall-stiffening

  9. Geoff
    Jul 31 - 12:08 am

    Enjoyed your comment Claire. I live in Hamilton but got no help when I saw Dr. Hyde. Individual resourcefulness, such as yours, is still to be valued, like Cort’s contributions, while much of medicine’s practitioners are confused.

  10. Joan
    Aug 24 - 5:08 am

    Hi

    In 1977 I was thrown into a brick wall and my skull connected with the brick windowsill causing a slight dent. This caused my body to go into permanent ‘flight/fight’. I was diagnosed with chronic fatigue around 20 years ago and although I seemed to get past that, three months after I was operated on for a ruptured appendix in 2002 I started experiencing pain throughout my body and the use of one arm became very limited. Joint and muscle pain could also become quite severe at times. The Doctor diagnosed fibromyalgia. Since I react to most medications including pain killers, I decided to look for alternate methods of treatment. I was seeing a Chiropractor who used ‘Applied Kinesiology’. I put the problem to him. Although blood tests had shown my T3 to be normal, he targeted the thyroid as, since I had numerous symptoms indicating a problem with the T3 he thought that I had ‘Reverse T3′. Using Kinesiology, he tested each chemical involved in the process of converting the T4 to T3 and discovered that I needed Ionic Molybdenum in order to enable the T3 to do its job. To this day, I am taking the Ionic Molybdenum as most of the symptoms disappear with its usage. If I don’t take it, the pain and a range of other symptoms, come back. Over the years, as an alternative, I tried Thyroxine, (both the synthetic and the natural) but it didn’t help. It would seem that the impact of stress caused by the dent in my skull (which I cannot change), in my case at least, makes it impossible for the T4 to convert effectively to T3.
    I hope that this information is helpful.

    • Cort Johnson
      Aug 24 - 10:06 am

      Amazing story, Joan. It’s really something that your T3 seemed to be normal but was not and that thyroid meds did not help and you had to go deeper and when you did – it worked. Thanks for sharing.

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