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Fibromyalgia and Central Sensitization Syndrome (CSS)

Fibromyalgia | Last Active: Jun 25 11:29am | Replies (19)

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@rikmiller

Would love to connect with others and or find people locally for supporting each other and having others to talk to.

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The Chronic Pain Support Group on this site sometimes addresses fibromyalgia, but I would love a support group that is specific to this illness. Could you share more information about your experience with this disease and if you've found anything that helps?

I'm 73 and was diagnosed with fibro almost 2 years ago. I believe it was triggered by a mild case of Covid, because five days later the extremely painful all-over body pain and insomnia started. The pain comes in flares that last 2-3 months and then resolve for a couple months but are replaced by headaches. At least Tylenol helps the headaches, but nothing relieves the body pain, although generic versions of ultra-strength Ben Gay do help a bit with pain in the shoulders, neck and legs.

The insomnia is constant. I'm able to fall asleep with 100mg Trazodone and 2.5mg Melatonin but wake after about 4 hrs sleep and then most often can't fall back asleep. Sometimes the pain lessens a bit before bed. If not, I take 5-10mg Cyclobenzaprine (a muscle relaxer) which helps with the pain and sometimes with sleep. For some reason, it doesn't seem to help with pain during the day.

I'm very reluctant to try any of the drugs approved for fibro because I've read the side effects usually outweigh the benefits and the drugs have terrible withdrawal issues, especially Cymbalta. I believe the Mayo Clinic agrees with this and recommends mindfulness, tai chi, etc.

For the past few days, my pain hasn't been as severe but now I have stomach pain and nausea, which I read are also symptoms of fibro. I'm going to try a gluten free diet and see if that helps as some studies have shown that it does.

Interestingly, I recently read an article "Could Long Covid be a Subtype of Fibromyalgia". I found several articles on-line that research has shown an overlap in symptoms and possible association between the two diseases.

There are several fibro support groups on Facebook. Most are private, but some are public and I never post any comments on those sites.

Welcome, @rikmiller. I moved your message to this recent and active support discussion about fibromyalgia:
- Fibromyalgia and Central Sensitization Syndrome (CSS)
https://connect.mayoclinic.org/discussion/functional-decline-status/
I did this so you can connect with others like @ripley @dorma @tresemae @cantek @fightingfibro0505 and many others.

You may also be interested in these related discussions:
- Feeling at my wits end with Chronic Pain and Fibromyalgia
https://connect.mayoclinic.org/discussion/feeling-at-my-with-end-with-chronic-pain-and-fibromyalgia/
- Fibromyalgia: How do you cope?
https://connect.mayoclinic.org/discussion/fibromyalgia-3/
See all fibro-related discussions here: https://connect.mayoclinic.org/search/discussions/?search=Fibromyalgia

Rik, how were you diagnosed with fibromyalgia? What helps you?