Yale Paper: Long COVID/ME/CFS

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.

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!!

AH! Keith, thank you and apologies for not replying sooner - easier at my desk on a full keyboard v. phone. And I'm Joan, btw.

Yes, you are the only other person of whom I've read or heard who was diagnosed with lymphedema after having COVID. Have you, through your journey, met others, or heard of others?

You are much further (or is it farther?) along than I in treatment and journey. Thus, I'm grateful for your sharing experiences. My doctors - including the initial ER visits - ignored what I was saying. I'm fat so I'm sure they all thought my leg swelling - tho' I explained I'd never had it pre-COVID - was my body not COVID. (Ah biases toward women of age and size!)

Still no one is investigating the strange skin and pain on my thigh where the severe rash was. The pain is so severe and the location (near my knee and on the back of my thigh) makes it very difficult to walk. or sit. or lie down.

Now fitted w/ lymphedema wraps - for legs and feet tho' the ones for my feet seem to make all things worse so just wearing leg wraps - I see some lessening of the swelling tho' not if I don't wear the wraps for even 6 hours.

Once my appt. this Fri. w/ the post-COVID clinic is over and I see if I'm accepted for .. what? study? .. then I'll ask my other docs to do more blood and other testing. From all I read, I do not have hope.

I will mention your experiences (thank you.) Tho' in my late 70s, I still work (self-employed) and am an non-driver so getting to appts. requires lots of coordination.

This journey is not one I wanted - I expected to live out my "golden" years being if not as active, at least as engaged as before. I'm frustrated and yes, depressed, with all this has put on all of us.

With gratitude,
Joan

Hello... I too have thigh, knee and leg pain which is from hip osteoarthritis. But anti-inflammatories didn't work for the leg pain...Tylenol helps some. Through research of my own, I'm beginning to think it could be nerve pain, which is caused by hip osteoarthritis. Very painful to walk distance and sometimes painful to walk at all. I found a disease thru my research called Peripheral Artery Disease. It's a lack of blood flow to the legs. And the symptoms sound alot like your symptoms. Look it up and see what you think. It's just an idea....but I know how frustrating it is to not get answers and nothing you try helps! Good luck to you. Yes....I thought these were supposed to be our glory years too. I'm only 63....but hoping to get a hip replacement so I can get back to my active lifestyle.

Hi Joan,
Speaking of apologies for not replying sooner, all correspondence from Mayo Clinic since 5/14 has been going directly to my spam folder. Just noticed the problem this morning (5/31). I’ve been preoccupied with other health issues, alas.
I have not encountered anyone else with lymphedema symptoms and possible post covid (long Covid) linkage.
Will post updates about homeopathy when available. I will be treated for elevated Epstein Barr titers with Intravenous ozone infusions… beginning in about three weeks. All I can do is hope for some relief.

For the record, I’m Keith!
My symptoms of lymphedema began a few days after my Covid bout ended in early 12/22. My case was relatively mild… treated with Paxlovid and tested negative after day 6.
Since my hands were swelling as well I also have great difficulty with putting on compression socks. I now have Sigvaris Velcro socks (and gloves). Also have a pair of generic zippered compression socks.
As an aside, am I the only other lymphedema Covid person you’ve encountered?
As to homeopathy… last summer I was seeing someone who tried very hard with no positive results. For 18 months I’ve been getting once a week lymphedema massages and bandaging. Only small modicum of relief there.
On 4/17 I started to see a new and highly recommended homeopath. He exudes confidence… and by extension gives me some hope.
He had me get bloodwork at a Quest diagnostics here in Las Vegas. Most of the results were well within the Quest normal range. Not nearly normal for the homeopathic practitioner.
I have stuff going on with Cysteine, Dhea, vitamin d, and about 9 or so other things.
My titers for Epstein Barr virus were elevated and he wants me to get intravenous ozone treatments for that.
I am also getting subcutaneous shots of Helleborus… think it’s for swelling.
He has requested dietary changes (eat for my blood type). I have been unable to begin the diet regimen as I just began implant surgery for a tooth… so soft food at room temperature or colder for a while.
The good news homeopath wise is I have seen a tiny bit of improvement ( I had sores in my mouth from lymph swelling of face… they went away). Also my knee joints had been very achy… now the pain is under a 1…. Used to be 4.
I’m certain there’s bunches more to tell. Next missive!
Keep in touch, please. Hopefully something I’ve mentioned will assist you on your recovery.

Keith