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Addison's disease/Adrenal Insufficiancy and/or ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

me/cfsme cfs myalgic encephalomyelitis chronic fatigue syndrome adrenal insufficiency addisons disease

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#1 Seganfredo

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Posted 14 May 2022 - 10:10 AM


I'm throwing this in here because I'm sad to say that I need help - I'm desperate and willing to try most everything. And this is the place I know where some of the brightest researchers and self-experimenters (used to?) gather.

No doc has managed to help me in the slightest. Not 0.0001%. Much to the contrary.

 

I've been having symptoms that seem to point to adrenal insufficiency and/or ME/CFS. It's been like this for the last 3 years and I'm not being able to live my life AT ALL because of it. Went to so many doctors and specialists that I completely lost count. They're at a loss -  if it's not in the guidelines they can't do squat.

 

All exams I've done come out as if I'm healthy - but something is deeply wrong with me/my health/my body according to very obvious symptoms. I don't know what to do anymore to improve/resolve my health - especially because this severely lowers my ability to research, think and have the energy to try new, valid/possible solutions - and all the normal to crazy things I've already tried didn't resolve the situation. (Many helped and eased the situation A WHOLE LOT.)

I've tried most everything - you name it - and nothing truly brought me back to health.

 

 

Symptoms:

 

- Severe fatigue - I just can't manage to get myself to do almost anything. It's like my day has become a game that has "action points" and I've got almost zero of those.

 

- Post-Exertional Malaise (PEM) - I used to work out like a maniac, was built like a horse and overtrained all the time. Now, if I work out, BIG TROUBLE: starting next few hours or the next day, I get COMPLETELY exhausted, utterly mindless to the point of becoming useless, and in pain the next one to three days+.

 

- EVERY food, substance, etc sensitivity/intolerance under the sun - the only thing I eat without paying a steep price health-wise is meat with the exception to pork. If I eat gluten, instantly I get a weird headache, I cannot think or remember anything and my body becomes numb - I wake up with the WORST numbness in arms, legs, and top of the HEAD - the last one is the most scary. I must put the numb part lower than the rest of the body to start to normalize a bit. When I'm not well, even holding a cellphone or being in front of a PC is reason to feel sick.

 

- Stimulants are TERRIBLY AWFUL even in tiny amounts - worse than all those above is if I take even a sip of coffee or erva mate/yearba mate: my heart races like crazy, I lose my mind, my body gets into an absolute frenzy and I end up in ER. (In the beginning I was in the ER 2-3 times a week.) Puffing a cigarrete/nicotine gums eff me up real bad for days.

 

- Circadian Rhythm chronically upside down and progressively worse a few hours plus Unrefreshing Sleep  - so hard to fix this!!!!!! So much energy in changing this without any lasting results!!

 

- Ortostatic/Postural Hypotension - when standing up I basically half-faint, especially in hotter days.

 

- Brain fog and scarily bad memory - I forget words countless basic words all the time - right now I have to let go of things I want to say cause I can't find the specific words I know full well exist) and sometimes even I can't access something which should be obvious, like my complete address or what is a cooktop - it's scary.

 

- Apparent insufficient cortisol production - If under pressure or at any stupid argument/slightly pressuring situation (even at being challeged in silly situations), my body (hands, specially) shakes like crazy. There's zero emotion - but my body shakes like mad. taking cortisol helps for me not to crash worse and get into a a very scary, obviously life-threatening situation, but doesn't help in such a major way.

 

 

Other symptoms:

  • Heart palpitations (as a response to some of the above, as stated - from my research it might be from excessive Potassium - it lowers when I use Magnesium and/or throw up.)
  • Headaches (specially in response to eating anything that's not meat)
  • Insomnia, sleeping too much, or the need to sleep during the day
  • Nausea
  • Anxiety and depression from time to time
  • BAD sore throat from time to time
  • CANNOT TAKE COLD SHOWERS/STAY WITH THE BACK IN THE COLD - even 8 seconds of cold in the body/back will get me VERY seriously ill with severe pneumonia-like lung inflammation for one or two weeks.
  • Pain in the flanks - especially when waking up or stressing out (sometimes it's SO painful that it's a 9/10.
  • CANNOT ORGASM (WITH EMISSION) MORE THAN ONCE TO TWICE A WEEK (SPACEDLY!)  or I'll end up having to go to the ER with severe and scary heart palpitations and extreme lack of energy.
  • My eyelid twitches like crazy.
  • The toes of my left leg get white and bloodless - from time to time, especially if I eat something I shouldn't.

 

Now, a crazy thing that happened is, when I try FMT (Fecal Matter Transplant) I get in 100% remission from a few hours to a couple of days. It's the only moment I can RUN and EXCERCISE MYSELF without getting effed up.

Alas, I cannot live doing FMTs everyday as I quickly get diminishing returns to the point it absolutely won't work at all after the 2nd or 3rd go.

Already tried to completely zero and/or radically change my gut flora (took tons of Equilibrium from GB, the bacteria of milk kefir, and dozens other strains - but it seems it might be something else - some substances/metabolites present in the FM? - not the bacteria themselves (otherwise I'd get better by changing my gut bacteria, what I've obviously done as soon as I changed to a fully carnivore diet, which improved me A LOT, but doesn't solve me and I'm not able to keep for long). Didn't try to use Helminth Therapy because I will not be able to keep using them chronically in case they help, as I'm Brazilian and HT costs are too steep. And no idea if they'd work (they seem to work for some people, especially Hookworms/Necator americanus). Methylene blue also helps A LOT! Doing a few squats (but never more than some ~15 at a time) help me quite a lot too. Also, will be using microcurrents (again), but this time in the mold taught in Dr. Becker's Body Electric genius book. But what helps the most all the time, I guess, is autohemotherapy which is to draw 20ml venal blood and apply it to the deltoids and glutes, 5ml each. Have seen around a guy with a similar case who managed to solve himself through adrenal surgery (I've researched that animals have been improved) - but no doctor has ever heard of such surgery and "it's experimental//not in the guidelines" (eff thaaatttt) and so they wouldn't perform it with a bargepole.

 

 

Any comment, idea, sugestion, whatever.... is greatly appreciated. This is not LIFE. I NEED to get back to living. This has effed up my whole living. It's just too much. I need my health back again so bad ASAP. Help.


Edited by Seganfredo, 14 May 2022 - 10:37 AM.


#2 Harkijn

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Posted 14 May 2022 - 11:09 AM

You have so many symptoms that even a highly skilled medical doctor would be puzzled where to look first! Some of your symptoms might point to a low vitamin B12 status. so it would be interesting to see the effect of a  injection of 1000mcg hydroxycobalamine.

It should be kept in mind that vitamine b12 blood status is a very questionable marker for b12 status, so the proof of the pudding.....

 

Anyway, I can only sympathize with your predicament. I hope you will get some useful advice from people more knowledgeable than me!



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Also tagged with one or more of these keywords: me/cfsme, cfs, myalgic encephalomyelitis, chronic fatigue syndrome, adrenal insufficiency, addisons disease

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