← Return to More than 200 symptoms; still "you're the first"

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@jeindc

There are days, @earlylonghauler, that suppression of symptoms would be enough to allow me to function. I know it doesn't get to the root causes and that suppression only lasts so long.

Like you, I'm not sleeping. 3 hours of fair rest is the most at a stretch. I'm exhausted. Trying to ensure I can still work is tough and I push daily.

Reading your posts and others, I take from them lists to present to the numerous doctors who just are willfully ignoring me. They nod and say they should follow this more closely and then nothing.

Here's to us. We'll be in medical texts one day and one day, maybe others will be safer.

Wishing you rest.
- Joan

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Replies to "There are days, @earlylonghauler, that suppression of symptoms would be enough to allow me to function...."

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at our post-COVID syndromes, because even physicians confuse somatoform disorder with hypochondria and malingering, outdated and denigrating, but still popular, monikers for people who simply worry about getting sick all the time), because in FACT, some of our symptoms are so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.