Covid Legs and Toes

@jesmorales, you might find some helpful tips in this related discussion:
- Any tips to help recovery for a COVID Long-Hauler?: https://connect.mayoclinic.org/discussion/long-hauler/
- Post Covid Symptoms and what has helped me. https://connect.mayoclinic.org/discussion/symptoms-7/

I too have this symptom since having covid.. I found it helpful to lay down with your legs raised to help the blood flow back..another thing is massaging your legs and feet several times a day, wear loose clothing especially for your lower body because anything tight fitting will aggravate the problem. It’s not perfect but you should feel some relief if you do these things regularly. I do like to share with others what I know but it’s important that you are also getting medical attention to be safe.

My child with POTS after a viral infection had these symptoms - purple feet and toes. (Also erythromelalgia (burning feet and hands) in addition to Raynauds.)
She is currently being treated by a rheumatologist and an autoimmune neurologist familiar with dysautonomia. IVIG is helping.

I have had this exact same condition since having COVID in spring of 2020. I was diagnosed with erythromelalgia and Raynauld's. I also have mild dysautonomia that causes intermittent discoloration of my legs (purple with white spots). I have yet to find something that helps other than relieving the symptoms through lifestyle alterations. It has been super frustrating. I looked up IVIG but would have to pay out of pocket and it's absurdly expensive ($10K a session or something like that). I've tried dozens of supplements to no avail. I've been on Low-Dose Naltrexone for over a year with no changes (yet). I've seen a neurologist, rheumatologist, functional medicine doctor, naturopath, vascular specialist, dermatologist, and several GPs. None of them had heard of erythromelalgia nor knew it was something that could be caused by COVID. The research needs to catch up. Note: I have no other health issues whatsoever. My labs always come back perfect. So frustrating!

May I know which specialist diagnosed you with erythromelalgia and Raynaud's?
My wife has calf pain in both legs since 7 months post Covid. Been to all specialists and also did rounds of Peptide and ozone and IV. Last couple of months she has burning in legs feet and toes. Just started seeing discoloration of toes turning bluish, purplish. Just starting LDN now. She was prescribed Gabapentin for burning which she started taking a week ago.

My first diagnosis of erythromelalgia (EM) came from an ER doctor at a hospital. I went to the emergency room when I had my initial, very painful flare where I had both EM and Raynauld's happening at the same time. See photo! The doctor literally Googled it and said he thought it was what I had. From there I saw another GP at a regular health clinic who agreed with the diagnosis, though he had never heard of it before and also had to Google it. He referred me to University of Washingon Rheumatology, which was a super disappointing experience, though they confirmed I did not have an autoimmune issue causing the EM and Raynauld's. They looked at my pictures and told me they were "telling." I went to a neurologist who told me she thought I had a severe form of Raynauld's and it was the vasoconstriction that was in turn causing the vasodilation. She prescribed nifedipine which I never took because I was afraid of the side effects. Plus, it actually causes EM in some people and the Mayo clinic doesn't advise prescribing it for EM. So... long story short, it was a general practitioner who gave me the official diagnosis but this was only based on my photos, the discoloration of my feet, and Google. As far as I've heard, most people with this condition are either self-diagnosed or their doctors had to look up their symptoms to diagnose them because they had never seen it before. In my case, it was definitely COVID that caused the damage to my nuerovascular system, and I've heard a number of other viruses can also trigger it, such as Lyme, Herpes viruses, Epstein Barre, etc. I should note that I was also tested for the gene mutation that is associated with Primary EM (inherited) and is was negative. A neurologist requested the lab test for me, and it cost about $250 which I paid out of pocket because insurance won't cover it. Best of luck to you and your wife! I hope she is able to find some answers. I do believe it will resolve once the nervous system heals fully.

I clicked on "helpful" bec it helps us all know that too few docs know anything about much of what we are experiencing even if there is a name for it.

I was told lymphedema for my swollen legs after a year of suffering w/ them and with other feet and leg symptoms. The wraps made my lymphedema worse which tells me perhaps it's not that. (2 hour ultrasound lead them to think it was tho' other things made them unsure.) A horrible rash on right thigh and ankle; ankle cleared up, thigh is not. AND it hurts and is swollen. Bottom of heels of feet are blistering and peeling and since I'm not walking far bec of pain, it isn't from that! Podiatrist said use a steroid cream; PCP said not to use it often. AAARGH. So the pain and burning continue.

How are we managing? What fortitude we all have.

Thank you so much for your detailed response and history. Sending our prayers for you. Hope you find respite soon. Agree, Covid has changed a lot of lives. We have gotten tests done from Bruce Patterson's IncellDX . They have two tests. The tests were not conclusive and they don't really tie the results to your symptoms. They are expensive tests. They prescribed LDN, Maraviroc and a statin just in case. They did say it doesn't seem to be microclots.
Although,now we are planning to actually get Dr. JORDAN Vaughns blood work from Medhelp Clinic in Alabama to check specifically for microclots.
If it is the nervous system, then the only way forward is to retrain the system.

Thank you for this additional information. Saved for upcoming conversation w/ Long COVID clinic through a uni-tied hospital in DC.

Interestingly, my mom has been experiencing something like what you're describing since COVID as well, she gets a badly swollen calf and ankle with angry red blistering rash. She is prescribed prednisone cream which seems to work for her, but it doesn't keep in from flaring up again some other time, perhaps when her immune system is run down. Doctor says it's from COVID and they see it all the time now. It's different from the EM I experience in that it is an obvious rash, but it's similar in that there is a lot of pain and heat. So strange! There needs to be more support for all these weird symptoms of Long Covid.