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Fibromyalgia worsened since Covid
I’ve had fibromyalgia since I’m 19 when I was first diagnosed, I’m now 45. I somehow managed for many years, the pain was mainly in my neck and upper back. Since getting a second Covid infection im 2022 all my pre-existing conditions from anxiety to fibromyalgia worsened. I caught Covid again in June 2025, since August 11th I’ve had horrid pains in both my legs, mostly in the quads and sometimes in my hands, fingers and arms. Has anyone else experienced this and if so has anything helped? I’ve had numerous blood tests, the only thing that came up was high inflammation but no autoimmune diseases. The pain sometimes spreads to the lower parts of my legs and I feel as though I have muscle weakness, it sometimes feels like something is crawling under my skin (it’s very hard to describe, or spasm like). Doctors don’t know what it is and keep saying it’s fibromyalgia. I was given Laroxyl drops which just made me feel groggy and didn’t ease the pains. Physical therapy, exercise, stretching, massage, cold showers, heat, nothing helps :((( Has anyone tried Tonmya yet? I’m in Europe so can’t get it here yet but curious if it helps. Don’t really know what else to do but it’s really taken its toll on me both mentally and physically, I’m having to cancel plans an awful lot and sport is my only temporary distraction, but some days like today I feel just too weak to exercise, and like my legs will just stop working. It’s quite scary and I don’t really know what else I can do 🙁
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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 :(((