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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Again....I didn't have a chance to proofread the above...apologies! Indeed my swollen glands which were also swollen under my arms and had been that way for 35 yrs., did disappear, until I had a carotid stent inserted just last Monday. Unfortunately, they back although not under my arms.
My sleep has been seriously impaired by either the Encephalitis or the steroids...I don't know which. I did fall 11 times and ended up seriously hurting myself on the last one. The extreme weakness from stopping the cortisone. I should also mention that I had hallucinations during the second round...and all in all, it was a terrible experience. Medicine changes didn't help, and I guess a lot of things didn't. Over and done.
Still I hope the sleep improves. I've been getting 2 hrs./night if I'm super lucky and this has been going on since April. A long time, but I'll tell you that my average is about 4 hrs./night. Also, just fyi you can't have the new vaccines if you've had Autoimmune Encephalitis. It will bring on another attack and a different part of the brain may be affected.
I'm glad that you're doing well, Wayne, and I think all of us can have different responses to the exact remedy. Oh, out of interest, I've gone from an x-small, small to a large in clothing. This is directly due to the steroids and I'm not happy about it. Any ideas? My rather small diet is the same as before. Stay well....Yours, Lenora
I take issue with this because hormone deficiencies are not necessarily "treatable." Cortisol replacement works for a while. The doctors will not have you stay on cortisol, at least not my own. Cortisol at low physiologic dose did nothing for me (4-5 mg). At 40-60mg, it brought me back to life as if I were entirely healthy again. It came with major side effects.
Hormone deficiency (if it is really my problem, and not ME/CFS), is not treatable. If the one or two rounds of cortisol were supposed to be a cure, then I suppose I did not have a hormone deficiency and did have ME/CFS.
Instead, I went right back to crash mode and the usual PEM/fatigue when I weaned off cortisol (even when I weaned off as correctly and carefully as possible).
If low cortisol is a recurrent and chronic problem in my case, then it is not treatable with low, physiologic and ongoing doses of cortisol replacement. Cortisol replacement comes with major long term side effects.
I stated I would update this thread when the time came. I guess I would just like to quickly mention that I have been back on a low dose of prednisone (5mg) indefinitely. I could not handle weaning off, all of my symptoms had returned. Just to be clear: I did not end up struggling with after effects or withdrawal, but with decade-old, familiar symptoms of inflammation, stiffness, low energy and weak muscles.
I had had about enough and asked a willing generalist to listen to me (once more) and not flinch at the simple fact of the matter that I required low dose prednisone to be well.
This, in addition to nightly use of Lexapro, has helped shift me toward "functional" in terms of stiffness, inflammation, pain, and fatigue management. I will be going on LDN (low-dose naltrexone) as well in the near future to see if there is any additional positive benefit.
Yes, a subset of CFS (a heterogeneous condition) is indeed just burnout/adrenal fatigue/adrenal insufficiency -whatever you want to call it. Sometimes also low levels of aldosterone and/or low levels of T3Ok, not sure if anyone saw the link. This is a possible CURE, not treatment, for HPA (Adrenal) issues. Not quite Chronic Fatigue, but related. I have adrenal issues only (with thyroid ). The article talks about, if you can believe it, RU4-86, yea, the abort drug, or its counterpart. They seemed to have CURED a person who was on low dose Cortisol, suffering (HPA) Adrenal issues.
Its shocking to see this article is 5 years old, after years searching on the web, I happened on this ONE particular site. 5 tears old, a potential CURE (for HPA issues) and never saw anything about this on other sites, although my main Adrenal site was shut down 6 years or more ago.
Not sure if Chronic Fatiguers are looking at HPA adrenal issues, they are sooo similar but different. Mine is definetively ADRENAL related as I can wipe out if I put heat over them, and Cort is the ONLY thing that really works.
I can mention Adrenal Insufficiency, but Im not allowed to say ''Adrenal Fatigue''. Like there is a difference. ???
It depends on the individual. You might read the subsection here:could you please elaborate on whether one should start thyroid or adrenal treatment first if both are suspected?