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Yale Paper: Long COVID/ME/CFS

Post-COVID Recovery & COVID-19 | Last Active: Jun 1 1:36pm | Replies (26)
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@welchllb

I found this article fascinating and self-descriptive - I had CFS (diagnosed by Mayo) in the late 80s, have Long Covid, and have recently been diagnosed with borderline POTS. I am currently taking Mestinon for the POTS. This medication worked like a miracle drug for 5 months and now, I'm back with the same ole symptoms....SOB. fatigue, PEM big time, dizziness, etc. Mestinon has obviously stopped working for me. My neurologist is getting discouraged, as am I. I know that Pacing is the name of the game for now but I miss my very active life so much.

I'm not sure where to turn which is how my doctors feel, too. I just had another EMG - normal and will have a stress test in a few weeks.

Keep the information coming. This site alleviates my feelings of fighting alone.
Thanks.

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Replies to "I found this article fascinating and self-descriptive - I had CFS (diagnosed by Mayo) in the..."
jeindc | @jeindc | May 15 4:17pm

I gave you a 'hug' and it's not enough. I feel your pain, literally and figuratively. Today, I was fitted for lymphedema wraps, that took 11 months after contracting COVID to be diagnosed even tho I had multiple hospital and doc visits showing them that my legs were not "my" legs any more. Could it have been alleviated or curtailed if suggested sooner? We'll never know.

I'm just exhausted from going to doctors and getting stuff to treat symptoms and no one doing more.

So yes, this site and the ability to at least see and send to doctors what we're finding is the only way I can attempt to cope.

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Lucy | @welchllb | May 31 1:05pm

Thank you to all for your likes and hugs!! I had my stress test this week. It was a bad experience.
The lead technician wanted me to start on the treadmill even though my PCP had ordered a chemical test. I gave it a try for about 30 seconds and ended with a major episode, i.e. SOB, blurry vision, weakness, dizziness and of all things, tears!! Why tears??? Anyway, the results did not show any major heart issues but did show that my BP drops when standing and then, recovers when sitting. Hello, I've suspected this and tracked it with my own BP cuff for 4 years now. Waiting to hear if Neuro will want me to change to another med. In the meantime, I'm still recovering from Stress Test 3 days hence. Does sound like POTS. Thanks for listening!!

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