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CFS or Adrenal Exhaustion?

Discussion in 'Adrenal Dysfunction' started by kerrilyn, Feb 12, 2010.

  1. kerrilyn

    kerrilyn Senior Member

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    Hi all,
    I'm new to the forum so don't know if I'm posting this is the right place. I've been dx with FM. I fit the Canadian CFS criteria, but it's not something I talk to a MD about.

    Few months ago I went to a GYN to help with hormone testing/balancing. After waiting 6 hrs to see him, I got the whole 'you are just depressed'....'if you want to be well you would be' speech. He also said I have Adrenal Fatigue - The disease of the 21st century: Chronic Fatigue Syndrome. As if they are the same illness. And sadly, he was training another young doctor that day so this misinformation will continue to spread.

    I do have many symptoms of adrenal fatigue as I imagine many with CFS or FM do, but some of the symptoms have improved over the years. One major symptom that remains is if I have to wake up before 10 am, I will feel faint/dizzy right after waking and generally sicker/weaker all that day. This doctor did a blood test for AM cortisol and it was within normal range.

    I was just wondering how do you know the differences between Adrenal Fatigue and CFS because some of the symptoms overlap and how would you explain the differences to someone who thinks they are the same thing?
  2. richvank

    richvank Senior Member

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    Hi, Kerrilyn.

    In the GD--MCB hypothesis, the dysfunction of the HPA axis in CFS (which is sometimes referred to as "adrenal fatigue," but usually is not a problem with the adrenal glands per se, but is higher up in the HPA axis) is caused by glutathione depletion in the hypothalamus and pituitary. The HPA axis dysfunction is a major part of the complex of problems in CFS, but is not the whole thing.

    Best regards,

    Rich
  3. froufox

    froufox Senior Member

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    Hi Kerrilyn

    Welcome to the forums. Sorry you have FM, ME/CFS and adrenal fatigue too. I think that you ask a good question, as you say some people say that ME/CFS and AF as one and the same thing. I agree though that you can definitely have one without the other as you can have AF without necessarily having ME/CFS although it can be difficult to distinguish the two sometimes as the symptoms are so very similar esp if you have severe adrenal fatigue. Having one can make the other worse because of the overlap in how the endocrine/immune/neuro systems work in the body and if one is underfunctioning that will put stress on the other ones. I have ME/CFS & adrenal fatigue too although I have come across some people with CFS who do not really suffer from many significant adrenal related symptoms whereas I have an extremely poor response to stress most of the time.

    Also I guess because the underlying causes for the ME/CFS - whether that be chronic infections/toxins/nutritional deficiencies/methylation block - put a huge amount of stress on the endocrine system which struggles to keep up and maintain homeostasis as a result and a lot of people with ME/CFS inevitably end up with some endocrine/adrenal type symptoms, depending on their level of infections and toxicity and perhaps in some cases how long they have been ill for.

    Its good to hear that some of your symptoms have improved though and I hope that you continue to improve.

    Just to let you know that saliva testing for cortisol is more reliable than blood testing - my blood cortisol is in the normal range too but my saliva levels are way below normal. So it might be worth having a saliva test.

    Rich I just wanted to jump in and ask you something I've been meaning to ask for a while - I know that your hypothesis is that it is the low glutathione & partial methylation block that underlies ME/CFS but I just wondered that if you do have very low cortisol as in my case, can that also just become a vicious circle and prevent the glutathione from building up? I know that you think that it is the other way round and that the glutathione is the most important thing but the reason I ask is that one practitioner I spoke to recently told me that low cortisol leads to low glutathione - I dont know where she got her info from and I've not come across any research that says that although it certainly feels in my case that my adrenal fatigue prevents recovery. I do have very low glutathione tho which is no doubt fuelling the endocrine/immune etc insufficiency but the whole thing just feels like a vicious circle sometimes. Anyway I just wondered what your thoughts were on this.

    Thanks.
  4. caledonia

    caledonia

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    The test for adrenal fatigue/exhaustion is a 24 hour cortisol saliva test. If you tested positive and took adrenal supplements to correct it, and you got 100% better, then you had AF.

    I have been treating my AF for several months and things I have noticed so far are: able to hold chiropractic adjustments, a bit more energy, no more pain in the arches of my feet, losing fat in my midsection. I'm don't think I'm anywhere near having my adrenals repaired though because I'm still craving salt.

    I don't think AF would cause post extertional malaise, just regular fatigue. Nor should it cause fevers/swollen lymph nodes/flu-like symptoms.

    ps. I forgot to add, I also had an increase in stomach acid, and had to cut back on one betaine hydrochloride per meal.
  5. kerrilyn

    kerrilyn Senior Member

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    Thanks Rich, Froufox and Caledonia.

    I was hoping to talk to this doc about HPA axis dysfunction, but I didn't get the chance. When he heard I was on disability, his civility went out the window. I try not to stress about things like I used to, I can't, I know it will just make me really sick so I've learned to let go - including dealing with idiots like him.

    So post-exertional malaise doesn't exist in Adrenal Fatigue? I didn't think it did, but then I read somewhere it did so that confused me more. Oh, sorry it may have been lack of endurance/ability to exercise with AF. I know people with FM who don't have PEM, but I do. I also have MCS. Many years ago I worked with chemicals when I was too young and too stupid to realize the long term damage that could cause.

    It makes me wonder do I have CFS (because I have fatigue, PEM, sleep dysfunction, pain, cognitive/neuro/endrocrine/immune dysfunction) that could be caused by a virus like XMRV or am I now the result of a life of long-term hormonal imbalances, low ferritin, infections like mono, chemical exposure, and finally whiplash. I can't say there was one thing that was my 'aha that did it' moment in time, except the whiplash, that was definitely the final straw. Either way, I'm here now.

    I'm definitely at more risk of fainting in the AM during menstruation, but I also have low ferritin so I wondered if that was part of it. I cannot lose weight - especially in the belly! But I do not crave salt, I crave sugar.

    I did saliva testing on my own 5 yrs ago (through Rocky Mountain Labs), but didn't have a doc to help me with the results. Prog was low normal/Estrogen high normal. Testosterone was low. My noon cortisol was high and they assumed I went back to bed after the morning reading, which I did. I just can't get up or stay awake in the morning and of course not able to sleep at night.

    This was the first doc I could find who does saliva testing but he just took blood instead. And I was mistaken, it was Random Cortisol that was tested. It was 211 (normal 65-540 nmol/L) when taken at 2 pm and 463 when taken at 10 am. I'm going to do another saliva test and see were things stand now.

    My free testosterone was 1.86 and then being on the testosterone cream within 6 months it went up to 16.8 (almost double of highest normal range). And after 6 months, bioavailable Testosterone measured 2.9, again over double what it should be. It did nothing except make me angry, so I'm taking only a little now and haven't been retested yet. To increase so dramatically with little positive affects (like muscle strength or endurance), could that be a sign of a problem higher up the HPA axis? It seems like most people with CFS with low testosterone get little benefit from supplementing it.

    Rich, can you point me towards your glutathione depletion info so I can read more. Thanks.
  6. kat0465

    kat0465 Senior Member

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    for what it's worth, ihave been sick with cfs for about 20 years now. and just recently had a 24 hour saliva test done on all my hormones, i had absolutely NO cortisol in theAM, then it would go up some by the evening ( which explained why i always feel a little better at night) i started isocort, dhea, and bio identical hormones.
    the compounding pharmacist who did my saliva test said it didn't surprise him, as most of his fibro customers are that deficient. he sees it all the time. so what comes first the cfs or the adrenal exhaustion:confused: i wish i knew, but after almost a year on the meds, i havent noticed any big difference.
    My brain hurts from trying to figure out this mess.
    Kat
  7. ukme

    ukme Senior Member

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    Kerrilyn you should definitely get the saliva test done.
    My daughter has tested with low cortisol and has corrected this with adrenal supps. Even with this correction she (like you) is very tired in the mornings and remains unable to wake up before 10am. I can't get my head round the science but it would seem that taking gluthathion might make a difference?
    Best wishes
  8. froufox

    froufox Senior Member

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    Hi Kerrilyn

    Sorry about your experience with that doc, I hope you find another who is more empathetic and receptive. Also sorry to hear of all of your health challenges - you are not alone a lot of us here are experiencing the exact same things you. I would say that PEM is a classic symptom of AF, aswell as ME/CFS, because to me PEM is the same as adrenal 'crashing' though that in itself may be due to toxins/infections causing the mitochondria/cells to run out of energy and also preventing hormone utilisation. It does sound like you have ME/CFS and not just AF from what you say though obviously no-one here can diagnose. MCS can be caused by low glutathione and is also a symptom of AF too.

    I am also very in low ferritin so I know what you mean about feeling even more weak during menstruation especially initially with the iron loss I feel like I'm about to keel over...not so much during though when I usually feel better I presume because my blood is toxic with infections and other toxins and having my period is like having my blood cleansed. I crave sugar a lot too more so than salt.

    It could be that something was blocking the utilisation of the testosterone at the cellular level and that is why you did not feel much improvement.

    Here are a couple of links explaining Rich's theory of ME/CFS..

    http://www.aboutmecfs.org/Rsrch/GSHMethylation.aspx
    http://aboutmecfs.org/Trt/TrtMethylTheory.aspx

    Anyway I hope that you find some support and useful information here, take care.

  9. kerrilyn

    kerrilyn Senior Member

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    It would be nice if it was just AF because that is 'fixable', difficult but doable. But the combo of CFS and AF makes 'fixing' virtually impossible it seems. It feels like being poisoned on a cellular level.

    On a bad day if I raise my heart rate, which can happen by climbing stairs, I feel like oxygen is not going to my brain or cells. After a few stairs I will get light-headed/dizzy and weak, not having the strength to lift my limbs to climb the stairs. They get very heavy and my knees buckle. I feel winded but not from a heart or the lungs standpoint - if that makes sense. An overwhelming full body feeling to immediately sit down/rest or I will fall down. Does that sound like PEM too or AF? --EDIT: from doing more reading I think what I'm describing is orthostatic intolerance, maybe AF added to it as well. --

    If I do an activity for too long that tires me out from an endurance standpoint (like walking on flat ground) but has not raised my heart rate, or at least not quickly, afterwards (later that same day or the next day) I will have pain, fatigue, some light-headedness, get cold/unable to warm up and a general flu-like feeling. That I figure is PEM, post being the key term.

    Froufox, I understand what you mean about the low ferritin. And it is a vicious cycle that heavy menstruation can cause low ferritin but then low ferritin can then cause heavier menstruation. I also read a study that shows association between decreased ferritin and FM http://www.prohealth.com//library/showarticle.cfm?libid=15112

    Ukme, you and your daughter have my sympathy. I read in another post she is only 14. My hormones have been messed up since I was slightly younger than that. It's not fun to be sick and tired all the time, especially as a teenager.

    On a more positive note, there are many great things to read here. :Retro smile:
  10. caledonia

    caledonia

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    Rich thanks for that explanation of adrenal fatigue being caused by dysfunction higher up on the HPA axis. I think that would explain why I had such terrible trouble finding the right dose of adrenal supplements. My correct dose is 1/256 of one capsule of adrenal glandular - basically the amount that sticks to the sides of the capsule after you empty it out!
  11. wciarci

    wciarci Wenderella

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    Kerrilyn, excellent explanations here. My endocrinologist is starting to believe me and look at my HPA axis functioning.

    Caledonia, I am going to try adrenal glandular, Thanks!

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