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Lessons from ME/CFS: Finding Meaning in the Suffering
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How to ease the fear that accompanies M.E

Discussion in 'Lifestyle Management' started by Ivana, Jun 6, 2012.

  1. Hope123

    Hope123 Senior Member

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    On a practical level, if you haven't, check out www.cfidsselfhelp.org. It's a website by a psychologist who has personal experience with CFS and has free advice about pacing. One of the things they talk about is tracking your symptoms, activities, events, etc. closely for a period of time and seeing if you can find patterns. Some of CFS is totally unpredictable but others might be somewhat predictable. Just remember that one of the stranger things about CFS is you could feel reasonable doing something but that the effects from the activity can hit hours or even a day or two later. That's what post-exertional malaise is. For example, I know when I get a sore throat without other cold symptoms, that it's a warning sign, I better start to rest more or I'll get more symptoms, have a longer exacerbation down the line. I have an idea of how much I might be able to do before getting even sicker.

    In terms of the tachycardia, one consideration would be to look up stuff about orthostatic intolerance/ POTS, get tested for it, and get treated. Especially if you get the tachycardia and anxiety with longer sitting/ standing periods. People with these diagnoses can get the feelings of anxiety without having anything psychologically prompting it but over time, I would guess the biological feelings can make one more anxious psychologically. Early in my illness, I had what felt like 2 panic attacks coming out of nowhere for absolutely no reasons (I am not an anxious person at all). My ME/CFS specialist explained that that could have been the OI.
    ahimsa, Dolphin and Wayne like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Now Im concerned. I drink a lot of Rooibos tea as I cant have caffeine.

    My cortisol results BEFORE I started drinking Rooibos tea were abnormally low. Does anyone know if that means I shouldnt be drinking it? Would it make a low cortisol issue worst?
  3. adreno

    adreno 3% neanderthal

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    Yes, that is what the article suggests. Caffeine, on the other hand, will raise cortisol output.
  4. Ema

    Ema Senior Member

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    Caffeine does a REALLY fine job of raising cortisol until there is no more to raise - just ask Ema "former diet cola addict" how well that it works in the short term. But once the raw materials run out, caffeine just makes low cortisol worse by adding in the fun of adrenaline surges.

    I think caffeine is fine in moderation for healthy people but if I could go back, I would cut out the caffeine about 2 years before I finally did.
  5. Ema

    Ema Senior Member

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    Let me know if you have trouble finding info on any of these as I probably have more individual articles.

    Generally the adaptogens are good for swinging high to low or high cortisol and the cortisol lowering supps are best for, well, lowering cortisol. But again, choosing the proper supplements depends on your saliva test results along with symptoms.

    Make sure also to test FT4, FT3, and RT3 if possible along with the TSH for a better picture of actual thyroid status.

    There are probably more but this is just off the top of my head - please feel free anyone to help me add to the list!

    Adrenal adaptogens -
    1. Schisandra
    2. Ashwagandha
    3. Rhodiola
    4. Astragalus
    5. Ginsengs
    6. Licorice (better for low cortisol and/or low aldosterone)
    Lower High Cortisol -

    1. Phosphatidylserine
    2. Holy Basil
    3. DHEA
    4. Zinc
    5. Valerian
    6. Skullcap
    7. Medicinal Mushrooms eg Cordyceps, Reishi
    8. Melatonin (PM only)
    9. Kava Kava (short term only)
    10. 5-HTP (contradictory; may or may not help)
    11. L-Theanine
    12. Magnolia Bark
    13. Bacopa
    14. Ecklonia Cava
  6. adreno

    adreno 3% neanderthal

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    You might become desensitized towards the effects of caffeine, and also experience a crash when the effects wear off, but you're not going to run out of cortisol, or whatever "raw materials" you're referring to.
  7. Ema

    Ema Senior Member

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    The adrenals synthesize cortisol (and probably hundreds of unidentified hormones) in response to signals primarily from the brain. If the precursors are not available, these hormones will not be synthesized and that is what happens to varying degrees with HPA dysfunction.

    In my case, caffeine did help boost my failing adrenals but eventually there was nothing left to boost. This has nothing to do with desensitization or crashing for me.
  8. jeffrez

    jeffrez Senior Member

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    Right. Whether the rooibos would have beneficial results in the long run by "resting" the adrenals, or perhaps altering glucocorticoid & steroid receptor sensitivity, is unknown to me. Maybe someone who is more of an expert on adrenals would know the answer to that.
  9. adreno

    adreno 3% neanderthal

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    And which precursors would that be?
  10. taniaaust1

    taniaaust1 Senior Member

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    Caffeine seems to be very bad for my POTS. It has actually made me collapse unable to walk on one occassion I had it.

    We all have so many issues going on in our bodies that it is soo hard to work out what is the best things to be doing.

    I drink about 3 cups of rooibos per day (for past 4mths or so) and havent noticed any bad effect.

    I do thou wonder if the low abnormal cortisol levels affect me anyway, as when I was on prescription drugs to raise cortisol (before I was drinking rooibos).. that didnt help me get any better anyway.
    So maybe my body dont really care what level my cortisol is at, cause of other major things going on.....
  11. alex3619

    alex3619 Senior Member

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    Hi adreno, or both outcomes. Some aspects might improve, others might get worse. This is not a simple issue. Higher cortisol will suppress immunological symptoms, but also suppress the immune response. It can have good as well as bad effects. Its a blunt instrument. Bye, Alex
  12. xchocoholic

    xchocoholic Senior Member

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    My cortisol was low on my labs until one time when I had a fasting blood draw at 10 am.
    This fasting blood draw was immediately followed by pre seizure / seizure activity. The room
    was moving and wouldn't stop so I had to sit on the floor and take a klonopin.

    I'm assuming that my high cortisol level was in response to my glucose dropping too low
    and then having several tubes of blood drawn.

    So I don't think we can just say arbitrarily that pwcs have low or high cortisol. It all depends
    on what our body's are experiencing.

    Tc .. X

    Ps. My body never adjusted to caffeine. My reaction only got more severe over the years.

    Fwiw. I consider being afraid of me to be normal. Who in their right mind wouldn't be scared.
    It's only thru educating ourselves that we can cope with this. Personally after listening to my
    traditional doctors for years and getting worse, I'vr now decided that was bs. I plan on sticking
    with functional medicine.
    taniaaust1 likes this.
  13. Ema

    Ema Senior Member

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    I couldn't disagree more with this statement. I (and many others I know) have ME/CFS with very low cortisol and it is anything but mild as shown by both an AM cortisol and a saliva test. Studies may say this but then again studies also suggest that CBT and graded exercise are helpful for ME/CFS and we all accept that those studies are bunk.

    Getting appropriately replaced on hormones changed my life - got me out of bed and back into the world for the first time in years.

    I can accept that you had a bad experience with glandulars and/or HC and would like to share that experience with others if you could possibly accept that a certain number of people could potentially be helped by a trial of physiological doses of HC after proper testing and with appropriate guidance from doctors and others who have used this treatment successfully. It is not the be-all-end-all cure, no, but hormone therapy certainly has a place in treating ME/CFS.

    I think most of us are already TH1-TH2 shifted long before we start cortisol replacement. If this were true, then healthy people with physiological levels of cortisol would all be sick with viral infections and shifted to TH2.

    Adrenal glandulars are very difficult to use because they are not generally of a standardized dose so one has to try to guess at what they might be getting. I have only ever seen people with very mild adrenal dysregulation benefit from glandulars. Generally people with low cortisol get adrenaline rushes from glandulars that can be extremely anxiety inducing and unpleasant. I would not recommend this avenue at all personally.

    Doesn't Cheney also disagree with the use of B12 and Vit D? I'd take that viewpoint with a hefty dose of salt - which would also be good for the adrenals!

    I agree there is much left to learn and hopefully some further work will be done in the future that will help tease out the relationships.
  14. Ema

    Ema Senior Member

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  15. taniaaust1

    taniaaust1 Senior Member

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    Ema.. that isnt correct. Cheney has always put his patients onto B12 injections http://www.ncf-net.org/conference/CheneyLecture.htm .

    I spoke to one of his patients recently who was privately telling me everything he had her on and he still is recommending B12. (I cant remember thou what she said about D)
  16. adreno

    adreno 3% neanderthal

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    I am sure you feel better on hydrocortisone, because you keep telling me this. Then again, even healthy people feel better on hydrocortisone.

    I am also sure that some patients with ME/CFS has non-functioning adrenals, just as well as some people without ME/CFS has. But does this mean that in general ME/CFS warrants treatment with supplemental cortisol? No, IMO it doesn't. And the research, which you so readily dismiss, agrees with me. People take a variety of things to make them feel better, but that doesn't mean it is in their long term interest. A handful of anecdotes aside, we really have nothing to show that taking extra cortisol is helpful in ME/CFS in general. And if you want to go by anecdotes, I can find just as many who experienced negative effects.

    In any case I was replying to tania, agreeing with her on her personal experience that modulating cortisol levels did not make much of a difference. This is still my opinion.
  17. Ema

    Ema Senior Member

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    From his 4/2009 lecture in Fairfax VA (a paraphrase from the web):

    "According to Cheney, citing evidence from his Echo terrain maps, Methyl B12 and Folapro “is toxic to CFS patients”. The methylation block, which he believes exists, is helping to prevent oxidative stress

    Magnesium always benefits these patients.

    Almost every case of CFS is toxic to fructose, almost universally responsive to glucose.

    “Glutathione in this disease is not a good idea in most instances.”

    “T3 is the worst hormone that you can give to a CFS patient.”

    “Vitamin d3 is toxic to this disease.” "




    Granted, this is old now and he may totally be doing other things including Vit B12 again.

    My point was really more just that everyone has opinions and cherry picking the ideas that agree with our own preconceived notions is tempting but ultimately not all that helpful. Looks like perhaps I fell into the same trap! LOL.
    taniaaust1 likes this.
  18. Ema

    Ema Senior Member

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    Well, that's not particularly true. If one has high cortisol, generally they feel about as crappy as with low cortisol - granted without the risk of death from adrenal crisis. I have never felt well when my steroid dose was higher than a physiological dose. I don't know how people take large doses of steroids for long periods of time quite honestly without starting to lose the plot. Low dose steroid replacement is a completely different animal.

    I actually feel best on a combo of a miniscule dose of dex, which is a very long acting steroid, plus a small amount of HC because that is best suited to my particular constellation of issues. Most AI patients do just fine on HC alone but that is not the case for many with ME/CFS because of co-morbid viral and bacterial infections. This is yet another factor in why some may have tried HC and not had the desired results - they didn't hit on the right steroid combo/dose and gave up the trial prematurely as a failure due to lack of informed medical guidance.

    I don't believe the majority of people have non-functioning adrenals in ME/CFS. I believe they have HPA axis dysfunction and adrenal dysregulation. That's totally different.

    And yes, physiological doses of steroids have been shown again and again to help with the symptoms of HPA axis dysfunction. But it is NOT the same thing as treating AI and to my knowledge has not been officially "studied".

    Again, I've written over and over that hormone therapy is not appropriate for everyone with ME/CFS but that it should be used after appropriate testing and with a physician knowledgeable FAR beyond the normal in these matters and with our population. That is a vastly different statement than the one you just made.

    Funny, because the research which you posted in other threads was either not applicable to this particular situation that I describe or it actually supported my position as I pointed out in my responses. That's far from "readily dismissing" the research.


    I know a lot of people who had negative effects as well on a first trial of HC...that were alleviated by a proper type of steroid, proper dose and dosing schedule. It makes all the difference in the world. And there are still people for whom it won't help for one reason or another, I'm sure. But telling people that a physiological dose of HC is flat-out always harmful or immunosuppressive or the cause of TH1-TH2 shifting just is trying to cause unwarranted fear of steroids that is not justified based on either the research or the anecdata.

    I have no problem with either of us expressing our opinions. I would just like to not debate the same points ad nauseum on every thread that deals with adrenals and/or HPA axis dysfunction so I was hoping to reach some sort of place where we could agree to disagree without always having to re-hash.
  19. adreno

    adreno 3% neanderthal

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    You are the one who keeps replying to my posts to tania, and so you are the one who keeps this conversation going. You were also the one who brought cortisol into this thread.

    You are also now referring to studies I posted in other threads, stating that "they support your case", without any references to which posts you are talking about, or what your position is.

    You can go on all you want, about the wonderful effects of cortisol supplementation in ME/CFS, for all I care. I am still entitled to express my opinion to tania, and that opinion is that we should not put too much emphasis on cortisol modulation.

    Until you can provide evidence of your position that supplementing cortisol in ME/CFS is beneficial, that opinion stands, and I am going to express it as often as I see fit.
  20. sianrecovery

    sianrecovery Senior Member

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    I think its fear is a very natural reponse to our situation. In terms of living with it, I have found anything that helps me feel safe and gives me some sense of mastery of the situation useful - thats included plenty of stuff to calm the nervous system down - like gentle yoga, meditation, Donna Eden energy medicine exercises, talking about and sharing the fears with someone else sharing the journey, being in places I feel safe/alive/energised by when its possible, Stop technique stuff with persistent thoughts, and occasionally, EFT. And I guess a kind of radical acceptance - this is an utterly shitty thing to get stuck with, but it has powerfully put me in touch with what it means to be human. I also take valerian to calm anxiety when I need to, and 5HTP. Hope today is a good day for you xxxx

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