Fibromyalgia and Central Sensitization Syndrome (CSS)

Hi @fightingfibro0505. I'd like to invite @rwinney, @irr4et, and @siackma to this conversation as they shared their experiences with CSS in the discussion:
- Central sensitization - please share your stories
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories.

I'd also like to invite @dorma, @tresemae, and @katcollins as well to share a bit about their fibromyalgia journey.

@fightingfibro0505, While we wait for others to join the discussion, are you comfortable sharing a bit about how you are currently managing your symptoms or how you are coping?

Fibromyalgia: it's been a long journey, with ups and downs that everyone having it has to deal with, or will have to. Over the years, it escalates; gets worse and then sort of levels out. This gets repeated--over and over. Mine has been about 40 + years. Over the years, I've been prescribed several meds; none of which helped, or I could not tolerate them. The pain eventually spreads to the entire body; mostly aches; feeling like I am in a huge pressure chamber, being squeezed. Still; the worst part is the extreme fatigue. Some days it is almost crippling. Having said all this, I also have MAC, and a leg condition that causes my legs to 'buckle' and I get extremely weak; to the point that I have no choice but to lie down a while. I had spells sleeping for 32+ hours at a time! Thanks to Modafinil, the sleep problem has gotten better. Nothing to do for my legs though. Just rest. Several doctors, and none can come up with a reason for the weakness. It is permanent, it seems.

When I was prescribed Tramadol for back/hip pain, I soon realized that it helped the fibromyalgia! Just the aches and pain though. It does nothing at all for the back/hip pain. I take a tramadol the minute I wake up, along with a green tea capsule, so that I can function for a few hours. Still, there are days now and then that I just have to go back to bed. Sorry this is so long, but I thought I should relate the circumstances. Also, I am 80, and I'm sure that adds to my limitations. I hope this helps someone...

Sure, I suppose.

Hi there @fightingfibro0505. Thank you @JustinMcClanahan for inviting me.

@fightingfibro0505 - we chatted recently here,
https://connect.mayoclinic.org/comment/867000/
I'm sorry you continue to have challenges of burning and weakness and am hoping your skin punch biopsy test for SFN is negative. Please keep in mind how much CSS can play a role in hypersensitivity, insomnia, digestion, balance, etc...

I have SFN and CSS, and experience, or have experienced much of the same - burning, weakness, tingling, electrick shocks... joint, muscle, nerve pain. A good amount of weakness resulted from overall deconditioning. Hurting so much causes inactivity and by protecting ourselves from further pain it promotes deconditioning. Because Fibro, SFN, CSS, etc...are chronic conditions, it means they have moved past the acute stage and "hurt does not equal harm". That being said, as difficult and as it may be, moderating and balancing activity and exercise are very important.

"March before you feel like it", is a mantra learned at PRC and is used to remind us that we have to move even when we don't feel like it. It sucked not being able to stand at my bathroom sink to brush my teeth because of weakness. burning and shaking! Its scary stuff, especially when you're young and think it should not be happening to you. I understand how you feel and how overwhelming it all can be. I'm in your corner rooting for you.

Which PRC did you graduate from and when? Have you kept up with physical activity since participating in the program? How about reaching back out to your PT for help? What activities do you participate in currently?

I have similar issues!
Some days I have a weird balance/ weakness issue when I am standing.
My visual field gets dark, I feel dizzy and at times I feel I will pass out.
I have both Sjogrens and Dermatomyositis.
My ENT thinks it is cerebellar ataxia.
I’m going in for a balance test and then I will see a Neurologist.
Really puts the cabash on your day!
I noticed this last round started after gardening outside I. This blasted heat and I’ve read heat intolerance is a real deal with autoimmune disorders.

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

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?

Is there some reason Connect can't set up a separate support group for Fibromyalgia alone, instead of combining it with discussions that include other illnesses?

We can and will in 2024.