Lymphedema in lower extremities

Hi @pat814, while not covid-related, you may be interested in this related discussion with helpful tips about managing lymphedema in low extremeties

- Lymphedema in legs: https://connect.mayoclinic.org/discussion/lymphedema-in-legs/

How are you managing the lymphedema? Have you heard of lymphatic drainage massage? It is often performed by a certified massage or physical therapist. But you can also be shown how to do this yourself.

My 78yo M Covid symptoms began around 11/10/23. Lymphedema in lower extremities began about the same time making it impossible to walk more than two or three steps. Now six months later it has retreated to walking being about 85% of normal. Being treated with Furosemide 20MG 1/day and leg wrapping.

My primary care doctor referred me to a Lymphedema Clinic in my area. Fortunately Medicare and my supplemental insurance covered the treatment. The original diagnosis involved measuring my legs and ankles in various locations. Then heavy compression bandaging was used to get my legs back to their normal size. Each time the bandages were removed they remeasured. I used a compression pump at the office for 15 minutes along with lymphatic drainage massage. Once I had done therapy for a few months with good success, documentation was submitted to my insurance company to approve a Lymph Press Compression pump for home use. I use it every night after dinner for an hour. I also wear thigh high compression stockings. Right now a year later, the swelling is under control.

A 76 yo woman who also experienced lymphedema about 3 weeks after testing positive for COVID in March 2023, I'm also a non-Hodgkin survivor with no CT/PET signs of cancer now. Alas, so far, no specific diagnosis. The lymphedema was followed by a severe rash on one ankle and the same side inner thigh, and recurring rash/cold-sore like areas on the right side of my mouth. (Dentist can find no causes.) Combing the internet for information, "rash' has shown up as one possible long COVID symptom. Finding someone to help has been a bear since the symptoms are atypical for long COVID. I offer my body for study and help.

I cannot say for sure, but my calves are intermittently tight when symptoms are flaring. I'll go weeks without issue and then, placing pressure on the back of my thighs makes my calves feel tight. I don't notice anything in the feet, though. Originally, it was a tight knee.

Could also be that COVID has me sedentary where I was once very active.

May I ask, are these cold sore like sores inside the tight side of your mouth or on the outside. Is it your inner lips, tongue, gums, roof?
Im asking because I was hospitalized because of sever lesions cold sore type in my mouth and inside lips when I had covid.

Dear Katey122,
Yes, they are on the inside of my mouth - right cheek and lower gum below my teeth. They have not been as severe as yours to hospitalize me and I'm so sorry yours were and you were in hospital.

I am reading as much as I can of the more updated research and our symptoms are rare but not obscure. I wish they'd be more acknowledged and definitively tied to Long Covid.
JEinDC

To you, stumpedandgrumped - I am not more sedentary since having COVID. The lymphedema (not named from the start; it took 9 months for my PCP to say the swelling that happened before the rash was more than 'just swelling') to say "lymphedema" or to recommend something be done. The rash persists on my inner right thigh near my knee. None of the 5 salves (4 from two ER visits; one from dermatologist) cleared that up - only the ankle rash. Oddly, in hospital ER, they drew a circle around the ankle rash so I could see if it abated; not the thigh rash. No clue why.

It is exhausting.

And like a 'good girl', I did just get the CDC recommended 65+ vacs and, now 3 days later, still incredibly sick from it with symptoms that mirror having had COVID.

It is discouraging and means I can't work and I'm missing deadlines. .. and am physically miserable.