Change in Long COVID diagnosis/still no answers

Posted by jeindc @jeindc, Aug 23 3:52pm

3 Doctors said the swelling in my legs after COVID in late March 2023 was lymphedema. They 'confirmed' that "eye-ball" diagnosis with a 2 hour ultrasound. No one could explain the rashes on one leg, cracked skin on my heel bottoms, and continuing mouth sores. Shrugs were all I got.

Had a tele-visit and then this past week (1.5 months after tele) with a long COVID specialist who said I have lipedema not lymphedema. And still it's one of those that was said to be "the only case I've seen triggered by COVID." No cure for either lymphedema or lipedema. It IS possible the cracked heels which have returned is related to the new diagnosis. BUT I had none of this pre-COVID so it was confirmed that yes, it is LC and you have to live w/ it or try these suggested ways to manage.

I'm not having fun and I know you're not either!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

bodiegirl | @bodiegirl | Aug 24 11:31am

Don’t know how bad your cracked heel is, but I started using Urea cream on mine with amazing results. I use a pumice stone in the shower then apply urea cream and socks until bed time. I only need to do it twice weekly. It’s available on Amazon. Best wishes.

highlands | @highlands | Aug 24 12:11pm

I had mouth sores … severe along with skin rashes. My doctor told me is was a side effect of Paxlovid and gave me a 3 day medication to rid them and it worked. This was May 2024.
My loss of smell has come back however my loss of appetite remains a problem. I have to fight with myself to eat and I can’t eat foods I so much enjoyed before.
Fatigue, brain fog still consuming me. I’m 73 and trying so hard to feel better but nothing seems to help. My doctors say it takes time and every one is different.

jeindc | @jeindc | Aug 25 2:10pm

In reply to @bodiegirl "Don’t know how bad your cracked heel is, but I started using Urea cream on mine..." + (show)

Thank you. My podiatrist and PCP said cortisone cream because they are so bad and recurring. Now w/ the lipdema diagnosis, from what I've read, I should expect this regularly PLUS ingrown nails as a possibility! (WHEEEE! I had my first in 76 years of life that also occurred after COVID. Now that I'm reading more, since I took one dose of Paxlovid, I wonder if any of this is a reaction to THAT v. long COVID. I suppose I'll never know.) I appreciate your suggestion.

AND I found a bunch of "Urea" creams on amazon - need unscented and wonder which you use. Thanks.

jeindc | @jeindc | Aug 25 2:13pm

In reply to @highlands "I had mouth sores … severe along with skin rashes. My doctor told me is was..." + (show)

After reading your post, @highlands , I wondered if my mouth sores and some of the rest was from just one dose of Paxlovid to which I had a severe reaction and my PCP told me to stop taking it. Thus, it was 10 days before I tested negative while my spouse, who tolerated Paxlovid and started on day 2 when the scripts came, was far less sick and has NO after effects.

I'm 77 and this weekend has been "one of those" with so much pain and agony that I like you find it tough to keep going and to 'fake' a pleasant countenance for work .. which I still do, thankfully from a home office. (Going out - the effort to dress more appropriately than Zoom needs! -- is simply exhausting.)

To us all .. please let them find something to help.