And I stand in admiration of your tenacity and courage, Joan. Getting through every single day functionally is a tall order. It appalls me that we have to take information from patient support group posts to doctors simply in order to persuade them to care enough to start making important connections across what is happening to all of us. And thank you for joining Miguel in flagging sleep. There are times when I seriously wonder whether even potentially very effective approaches for me can possibly work when I am so relentlessly sleep-deprived. For what itś worth: The sleep-focused supplement I am trying now is Reishi mushroom extract. (I have deep respect for mushrooms like Reishi and Lionś Mane.) So far, itś not clear to me that it is directly supporting sleep, for me, but I will continue with this. My insomnia may perhaps be exacerbated by the intense anxiety I have developed since COVID. I don´t want to make too much of this, but I actually now believe that I have developed somatoform (aka somatic symptom) anxiety disorder (in which the patient has difficulty shifting focus away from a particular symptom). It is very risky suggesting this diagnosis to a doctor looking at our post-COVID syndromes, because even physicians confuse somatoform disorder with hypochondria and malingering, outdated and denigrating, but still popular, monikers for people who simply worry about getting sick all the time), because in FACT, some of our symptoms are so disturbing and disabling, that ANYONE would find it difficult to shift focus away from them. Nonetheless, I accept that somatoform disorder is a disease entity separate from generalized anxiety disorder, but I also protest loudly that it is NOT the same as malingering, hypochondria, or Munchhausenś! So what do I use to try to abate this somatoform focus? : 3 daily doses of a patented form of St. Johnś Wort (made with precise, medicinally effective concentrations of the herb). In the U.S., this seems to be available only through one manufacturer, right now (Natureś Way), under brand name Perika. I follow the Nootropic community a bit, and from experts in that community, I have learned that for somatoform anxiety, two doses of 900 mg daily (for a daily total of 1800 mg) are required. That means 6 Perika tabs daily. I have been delighted and surprised that for me, this amount is easily tolerated (and stimulating in a pleasant way) and that it may be starting to make a dent in the crippling anxiety. Slow going, but possibly real progress.
Oh @hrojzen0922 I am NOT tenacious - I just don't know what else to do. I am so tired all the time. Like you not wanting to mention somatoform (thanks for the explanation) to docs, I won't express my depressive moments because then that is all that is heard. After I posted earlier, the person w/ whom I had a telemed visit from the long COVID clinic who refuses to say I have it - even when I asked - because my symptoms are ones THEY don't know! - called. We went round again. I am paying a care coordinator bec I already hate (truly!) paperwork and balancing schedules to help me navigate through this. A most amazing person who knows me & my medical issues bec they once worked for my PCP of 26 years until he retired.
Your ideas for sleep are ones I'll take under advisement. Thanks. (I smiled when I read "Lions Mane mushrooms - a fan of "Clarkson's Farm" on Netflix or Prime, they grew the mushrooms and discussed drying them for use as a supplement. I digress which I do.)
Here's to us. Here's to someone at Mayo reading this. I'd find a way to pay to go there and be fully examined and find some help to just a) be able to sleep and b) understand that the major symptoms are not my imagination.