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Connective Tissue Disorder

Post-COVID Recovery & COVID-19 | Last Active: Sep 24 10:02am | Replies (4)

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@jeindc

Thank you, emo. They think it's lipedema - which is, they say and I've read, inherited but no one on either side of my family had it. I had an horrific rash on one leg and ankle as a result of COVID. PCP sent me to ER - twice - once they thought it was cellulitis; then an 'unknown skin condition' - alas, no one did a culture of it. Then dermatologist; then, a year later, an extensive ultrasound bec they thought lymphedema. And there is more. There is no cure or real treatment. It can get progressively worse but there are no specialists in my area - a major US city! or any that have yet been found elsewhere. And even if there were....

YES! Those who equate COVID with flu are annoying. The statistics of who is now getting and expected to get COVID are those in the 65+ age group. Those who are not getting boosters are in the low percentages in all age groups. It's as if the pandemic never happened. With the latest (since FLiRT) variant (XEC), the expected surge again this winter may be worse because of too few boosters.

I encourage people and try to explain that long COVID stinks and it's not worth chancing it.

Your note is so appreciated. Your frustration and mine are being heard and by too few PCPs and even specialists. I think I read more than many of them.

Here's to better.

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Replies to "Thank you, emo. They think it's lipedema - which is, they say and I've read, inherited..."

Thank you for sharing. I wasn’t familiar with this condition, and I’m sorry you’re going through this but glad you were able to get a diagnosis. I hope you’re able to find a treatment to help manage symptoms. I looked it up and I see what you mean about there not being a gold standard treatment. I think I had a PT who treated both lymphedema and lipedema, but it seems hard to find those who specialize, like you said. I’m not even sure how someone would even know she treated this conditions in addition to some more common issues PTs treat. Wishing you all the best and hoping you find that’ll help sooner rather than later.