Fibromyalgia worsened since Covid

My chronic diseases and syndromes have all gotten much worse since I had Covid. I have symptoms similar to yours, with muscle weakness, bugs-crawling-under-my-skin-type feelings, muscle spasms across my body, and sometimes feeling like I can't hold my head up. I also have pain that I try to keep at a 5 on the pain scale because I can sort of manage some of my life at that level. Unfortunately, that hasn't happened much for the last several years. I also have had numerous blood tests, and as a result, I have 15 or 16 diagnoses that all seem to exclude the symptoms of the others. I had one doctor tell me that someday there would be a syndrome named after me. I told him that I would prefer to know what was wrong with me. I am frustrated all the time. I have become virtually homebound and in need of help with housework and bathing. Pool therapy helps as long as I am in water up to my chin and for 30 minutes or so after I get out. Unfortunately, if I can't show improvement or I progress to a specific point, my insurance won't pay for the therapy anymore. I have tried several different pools on my own, but the only one that is helpful is a body temperature water pool. I live in a rural community, and pools at that temperature are few and very far between. I hope you find something that works for you. Please let me know if you do. I am interested in researching everything medical in hopes that I will find what my doctors can't. I am grateful for all of them and the kindness and compassion they show me.

What do doctors say can be the cause of your symptoms? Gosh I’m the same, I can still function with a level pain 5, it’s when it creeps up to 7/8/9 my functioning is affected :s if you’re in the US, have doctors suggested the new fibromyalgia drug Tonmya? I’m keen to try it but as I mentioned it’s not yet available anywhere in Europe.

On Monday I’m doing more blood tests, I feel that this is a situation that requires lots of different opinions and someone who can really think outside the box instead of following standard protocol. So far I’ve not been given a proper diagnosis and I’m being told to see a rheumatologist as well as a spinal surgeon and have a full spinal MRI. I honestly don’t feel like it’ll ever end and I’m so exhausted from constant pain 24/7. If you find anything beneficial please do share, so far I haven’t found anything. I tried the infrared sauna and normal sauna last night for 10 minutes and it made no difference after a deep tissue massage. Pain was the same, unbearable. Today I took some paracetamol as the pain stopped me from being able to sleep, it also didn’t help and I had to cancel the gym :(((

I have been struggling with similar issues since I had COVID in February 2025… I didn’t even think I was dealing with COVID as my symptoms were intense tingling in my hands, feet, fingers, toes, face, arms, legs… and then my legs hurt so much and I had severe weakness.. I was afraid I was dealing with Guillan Barre.. and thankfully after being in ER that was ruled out and I was told my COVID came back positive.. I have been working with drs b4 this happened if I have fibromyalgia… so could that be? And then the COVID made it worse? I’m now trying to get a definitive diagnosis of these symptoms… my pain and weakness and tingling come in episodes especially after much physical activity…. It’s very frustrating and discouraging… COVID definitely affects each person differently but especially those with chronic heath issues… hopefully you will find a great Dr who actually listens and wants to help… that has been my struggle through this life changing event…

@daunalee

Have you ever been diagnosed with fibromyalgia before Covid?

I saw a rheumatologist and spinal surgeon a few weeks ago, the rheumatologist confirmed I have fibromyalgia and that it’s definitely been aggravated with my Covid infection in June 2025. I have flare ups during this 5 month flare up where the existing pains worsen, and daily activities become even more challenging. The spinal surgeon confirmed I’m not going crazy, he told me he works with a rheumatologist specialising in Long Covid. From what I’m being told there’s no treatment or cure for fibromyalgia, and any viral infection including Covid can worsen symptoms. I’m trying to be extra careful not to get sick, it’s very limiting. I’m also trying to get ahold of the new drug Tonmya from the US, everything else I’ve tried in the past hasn’t helped, and since the 3rd Covid infection, my pains have spread. This last week the pains have spread to my lower legs and feet, it mostly feels like muscle aches but I’m having some kind of tingling as you mention which feels like nerve pain 🙁 it’s very uncomfortable, I don’t sleep well at all, and absolutely nothing relieves the discomfort 😓 massage helps in the moment, but I haven’t found anything that gives long lasting relief 😞

The rheumatologist gave myself and my mother a pamphlet on fibromyalgia, he said I most likely know more about it then he does. It’s important to pace yourself, not exercising makes it worse, and overdoing it makes it worse, finding the right balance is quite hard. Listen to your body, rest when you need to, sadly it’s one day at a time for now. Have you seen a rheumatologist to give you a proper diagnosis? Please keep me posted!

My first bout with Covid in 2021 triggered my fibromyalgia. Five days after Covid I woke with terrible all over body pain that lasted for weeks. At first my doctor thought it was Covid symptoms, then long-Covid and then he thought it was all in my head because all bloodwork came back normal. After seeing many doctors, I was finally diagnosed with fibromyalgia a couple years later. Looking back, I think I had fibromyalgia for many years but it only flared up for a couple weeks during season changes.

When I'm in a flare, cyclobenzaprine 5mg at night, helps me sleep. But what has really helped me with pain and sleep issues is low-dose naltrexone. I had to see a pain clinic to get my prescription but now my regular doctor prescribes it. I take a 4.5mg tablet after breakfast. It must be compounded at a special pharmacy and isn't covered by insurance. I think it costs me $50-60 a month. You have to build up to the maintenance dose slowly and then it can take a couple months to help. There are many articles on-line about it, here's one: https://www.fibromyalgiafund.org/giving-ldn-your-best-shot/

@daisy17 my bloods have all come back normal too, hence the diagnosis of Covid worsening my fibromyalgia. I’ve read that Tonmya is Cyclobenzaprine but it’s taken sublingually at a different dose. I’ve been told about low dose naltrexone also, so that’s helped you more than the cyclobenzaprine?

I’m already taking anxiety meds and monthly migraine injections, I don’t wish to take so many medications. I need to make sure if I do take anything extra, it’s the right one for me and my pains 😓 with few side effects. I’ve been procrastinating taking the medication for my slow gut, but the natural supplements haven’t been helping so at some point I need to start those. I also need to check that low dose naltrexone doesn’t affect the gut, if it does I’ll be told to avoid taking it. I didn’t actually check that with Tonmya 🤦🏻‍♀️

@sheevym I can relate to the tingling feeling you mentioned. I had that too. It would wake me up in the middle of the night, in my legs and arms, and then the pain would come. Some days the muscle pains were so bad, it was hard to think or function. Terrible insomnia that lasted for years. I also had periodic headaches that would come and go, lasting 4-6 weeks, only on one side of my head, and then go away for a couple months. I saw all kinds of doctors for that, had a brain MRI (normal) and finally figured it was part of my fibro.

I only take 5mg of cyclobenzaprine before bed when I'm in a flare. I don't take it during the day because it can make you sleepy, but some people do. Right now, I've been doing well for about six months. Either the LDN is helping me or maybe my fibro is in remission. But I plan to keep taking the LDN every day in case that's what's helping me and it has no side effects. I would definitely try it. I don't believe it's hard on the stomach since you take such a low dose. The only issue is that it's not instant relief since it takes a while to work up from the low starting dose to the maintenance dose, usually 4.5mg a day. Once on the maintenance dose, it can take a couple months to notice improvement. I've experienced no negative side effects. The only negative is the cost (about $1/day), but if it ends up helping you, it's priceless to feel better.

Also, I started taking 300mg of magnesium glycinate a couple hours before bed. An article I read on-line said it "may help alleviate symptoms of fibromyalgia by supporting muscle and nerve function, potentially reducing pain and improving sleep quality. However, more research is needed to confirm its effectiveness specifically for fibromyalgia." I truly believe it's helping me with relaxation and sleep. The 300mg dose is the RDA for women, so it's safe to take. I buy it on Amazon and take 2 capsules to reach the 300mg dose vs taking one huge pill. I also started taking vitamin C and B complex.

As far as Tonmya, here is an article by Depork Chopra, a licensed physician who's practiced as an endocrinologist and is known for his work in alternative and holistic health. He claims Tonmya is no better than cyclobenzaprine (also known as Flexeril). Tonmya is very expensive vs cyclobenzaprine, which is available as an inexpensive generic. https://www.painri.com/post/tonmya-tm-the-new-drug-for-fibromyalgia-is-no-more-useful-than-flexeril-tm