Long Covid joint pains

My world has also shrunk tremendously since getting Long Covid (from the virus itself or vaccinations/boosters). I was diagnosed with fibromyalgia 13 years ago but Long Covid is way worse. Back in 2020, I was playing sports regularly. I sometimes had to take months off, but I was able to manage it. Now, I'm looking into getting a rolling walker for longer walks and a disability hanger for our car.

I also have joint pain in the knees, ankles, hips, and shoulders. The pain pattern is different than what I experienced with fibro. It helps if I sleep with my knees elevated on a heating pad. (This also helped with fibro.) I move the heating pad around if other areas are hurting worse.

I am a Mayo patient, but I just discovered this 'support group' a few months ago, and it has provided some emotional support. I have only posted a few times, but knowing that there are a lot of people similar to me makes me feel less alone.

I wish there were actual meetings of a Long Covid group near me.

Thank you for posting. While I know I do not need validation of this stupid disease (do medical professionals call it a disease? Look at me searching for validation) to be sick or true, it is a great feeling to hang onto when you want to feel that self love.

God bless you. Yes ,i survived a stroke, which was inconvenient.....but three plus years of covid. Just when i thought it was certainly over ... covid attacked my lower right leg ankle and foot.....pain beyond numbers or words ..was put on gabapentin. ...made me clumsy. Then large doses of Acyclovir four times a day ...big help. Then " covid toes" antihistamines.. yes... today my new physician has started amitriptyline for nerve pain. When I go to Dr Google I seek trusted resources ,the Mayo,Cleveland clinic. National institute of Health. Please be encouraged. ..the pain finally goes from screaming to a nudge...to a whisper. Does increase if I over due it .. like standing and walking for two hours....oh the price to be paid. Don't give up!! Let's not let covid win. Very kind regards Suzanne Smith RN

Ask doctor about Fibromyalgia. Covid could have caused more long-term issues like Fibromyalgia. If your already have it, then Long Covid could have made that worse. It may, or may not be permanent. Either way, it's a start to finding out what's up.
Fyi, I have Fibromyalgia along with many other issues related to a car accident years ago. I understand the pain.

I am a fibromyalgia sufferer for a decade and say 4 1/2 years of LC has made the symptoms of pain/ fatigue/ inability to get to sleep etc 25% worse. A rather random figure, but a lot worse. Unfortunately another of my LC symptoms over his time has been high BP/HR with postural hypotension, and my GP has just decided to interfere, rather than help, and reduce my very long standing hormone replacement for hypothyroidism…5 weeks down the line his belief i am ‘overmedicated on levothyroxine’ has made it 40% worse! The relevance of this to your pain being I have seen from other LC forums that some sufferers are having thyroid problems being diagnosed for the first time…have you had TSH, Free T4 and Free T3 plus antibodies TgAb and TPO tested ( think they are called the same in USA as Uk)?

Yes, I have had joint pain that comes and goes. I would recommend eliminating all caffeine and alcohol for two weeks and see how you are doing. My joint pain vanished within days after no caffeine or alcohol.

I had the same symptoms and I found a condition called dystonia. It was known to exist during the Roman Empire, but today they do not have a test or treatment for it. In my simple terms, dystonia is "a circuit board" in our brain that can go wacky and impact the nerves and muscles at the joints with pain. (We have about 350 joints and dystonia could impact any of them.) It is known that caffeine and alcohol aggravates dystonia.

I have been keeping a journal on dystonia and I will copy some of it:
In recent months, I have had sharp pain in my joints that may last a few minutes and goes away. Then there will be sharp pain in a different joint. It mainly has been ankles, wrists with thumbs, knees and neck.

In recent weeks, I have had problems with my left hip feeling like it was slipping at the femur and causing catches that made me feel like I could lose my balance. It kept me from activities, but it is better right now.

The supplements that I am taking with hopes that they will help Dystonia include; Vitamins D3, E, A, and K2 (all with olive oil) plus Omega 3 fish oil and B12.

“The effects of dystonia can also worsen when you feel tired or stressed, or if you drink caffeine or alcohol.’
https://my.clevelandclinic.org/health/diseases/6006-dystonia
Watched a You tube talk by Dr. Venessa Hinson at Medical University of South Carolina. She said that Dystonia can be caused by something as simple as dental work. Also, stress can bring it on.
There are many different types of dystonia, but I would suggest researching cervical dystonia for a start. Keep a journal on Word on how you are doing and copy/paste what you are learning. It is a great reference for months from now. Good luck!

Hello. I am Anne living in CA. I have very similar symptoms you have. I had a bad covid in March 2023 followed by pneumonia and other respiratory problems. Since then my body is never the same. Didn’t take Paxlovir as I missed the 5 day window.
I had many issues but the main problems are hip pain, other random joint pain and extreme fatigue. I got a cortisone shot but it didn’t give me much relief. No doctors believe what I report. I used to hike and run but I save my energy only for work. I can’t use stairs and take Motrin 3 times a day. I can tell I am getting worse but no treatment or help. I stopped telling ppl or doctors about issues because they don’t relate what I say. I kinda get it too. I feel disabled and depressed but I am just doing my best daily.
I joined this group just to reach out and hear ppl who are dealing with the same issues after COVID. I am praying this horrible after effects go away soon and we all get better at the end.
Anne

Thank you for your response. Information and experiences are all helpful. I do not drink alcohol (very rare) and my caffeine consumption isn’t daily. I have had a dystonia reaction years ago from a medication after a surgery, compazine. It was horrible.

I am the same. Have always been active, did Pilates and Yoga, and now it is an effort. Constant aching in my lower back and hard to touch my toes, which used to be so easy. I also experience a lot of tingling throughout my body. Wake up not feeling rested. Seems like everyday is a push to get through. I also hope everyone suffering Long COVID finds their way back to the before! I don’t say much either to people as I think one has to experience to understand. And it is so frustrating as I have gone to so many doctors and had so many tests and nothing shows up. But I know what I am experiencing is real.

Have you found anything that helps your Fibromyalgia? Also how do they test for it?

Thanks