How my Fibromyalgia started and the evolution of research

Hi fellow sufferer, or rather fellow 'fibrite' desperately coping day to day. I've had this inherited disease all my 67 years but was only diagnosed about 8 years ago, because it was so poorly understood. Doctors are only now beginning to comprehend the complicated "syndrome of symptoms" involved. Each of us has a collection of symptoms unique to us, but we can compare notes and find out what helps us get through the day. I would first get a doctor who understands the disease and is willing to learn more about what helps you live a better life. Your health care team should also include supportive friends and family (or a support group); massage, if affordable; nutrition advice; and pain management, among others. Searching websites will give you more good information and more first hand stories with good helping hints to bring to your doctor. Don't stop trying to achieve your best life.

@daliea Welcome to Mayo Clinic Connect!

Yep, there are many of us long-time fibro patients here on Connect, and we share similar experiences like you spoke about. Here is more current discussion in our forum you might want to take a look at: https://connect.mayoclinic.org/discussion/fibromyalgia-is-it-an-autoimmune-disease/
And here is what Mayo Clinic has to say about fibromyalgia: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

I am interested to hear how you have managed over these long years with fibromyalgia. What were your go-to remedies, how was your life affected before the virus you got two years ago? And you're so right! Fibro is not nice.
Ginger

Has any one of the thoracic outlet syndromes been ruled out?

I have most of the same symptoms but I’m not dx’d with Fibromyalgia. I have Small Nerve Fiber Polyneuropathy. Small nerve fibers are everywhere in our bodies. In our skin they are responsible for sending heat, cold and pain signals to our brain. When they get diseased it can cause Allodynia which presents with skin hypersensitivity, exaggerated cold, heat or pain sensations and excessive sweating—hyperhydrosis. When the small nerve fibers in the bones or bone marrow get diseased it can cause the terrible deep aching bone pain. Tinnitus, eye problems, digestion—slow motility, belly bloat, constipation and bladder function are all symptoms of this disease. Small Nerve Fiber Polyneuropathy or Small Nerve Fiber Neuropathy with Autonomic Involvement can cause Positional Orthostatic Tachycardia Syndrome (POTS) which can give you dizziness and palpitations and vertigo upon standing. A recent study showed that nearly 50% of Fibromyalgia patients had Small Nerve Fiber Neuropathy. The best way to determine SNFN is via punch biopsy.

This is a very old post - but still struggling with numerous conditions (42 yr old) which came on approx 2.5 yrs ago (NO COVID involvement) - Your basic synopsis above is a small fragment of my medical chart & I’d appreciate any more info you can help provide on the SFN! I was diagnosed with Mixed Connective Tissue Disease after a positive RNP test; confirmation of Hashimoto’s (long time under-active (or “actively being destroyed” ? thyroid); Fibromyalgia (which just appears to be the name of my widespread pain/discomfort issues; and the latest of which is the SFN (although the biopsy wasn’t 100% active SFN, Neuro said it’s definitely what’s happening & I’m just in beginning stages of it) - which is puzzling considering how frustrating/exhausting the symptoms I do have are!!! Feel free to private message me if needed! Thank you for your insights!!! Peaceful blessings headed your way!

Good morning - let's bring our favorite "Neuropathy Guru" @johnbishop into this discussion - I'm sure he can share some insights and resources with you.
Sue

Thank you so much! Right after I posted, I took a “moment” (which is actually about 40 min!) to sort some laundry and start a load. This trivial task is just one of many that by the end of it, bending over, grabbing, reaching, lifting and just simply moving has caused my grip to be weak, fingers tingling, head/neck sore, eye pressure and just outright exhausted. Pain, weakness & tingling moving throughout neck, arms, legs, fingers - it’s just so frustrating to be “spent” with now no energy or strength to do anything “fun” or what I wanted to do/get done. It’s like all I can get accomplished is 1 chore to the next to keep some sort of environment around me in less chaos (which DOES help my mental well-being slightly as I suffer from anxiety/ADHD/Depression/OCD) but can never quite reach the “aaahhhh” feeling of calm 😉

Thanks for the tag Sue! Hi again @raepent1. Sorry to hear you've picked up some additional autoimmune passengers since you started the Does Small Fiber Neuropathy always start in the feet? discussion - https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-does-it-always-start-in-the-feet/. You certainly have a lot going on with MCTD, Hashimoto's, Fibromyalgia and Small Fiber Neuropathy and other possibilities.

If you are focusing on the neuropathy symptoms, you might find the videos, webinars and articles on the Foundation for Peripheral Neuropathy helpful. They have an e-catalog with links that make it easy to find specific topics - https://www.foundationforpn.org/wp-content/uploads/2021/12/11.23.2021-Website-eCatalog.pdf.

Have you looked into any complementary or alternative treatments to see if they might help your SFN?

I am on traditional medications prescribed by my Rheum & Neuro - both of which piggyback on each other’s “we’re managing the symptoms but according to your body weight, these doses are as high as I’d prefer to go” - which I’m completely ok with! I do not take strong pain medications (such as the well known painkillers - Percocet, Vicodin, etc etc etc) - just the Gabapentin and Lyrica which MAY help some, but neither of which seem to touch this “one & done” task ability or the extreme sensitivity I feel every day in the late afternoon/evening until I go to sleep.

I do a lot of stretching & use a massager (mostly on my neck/shoulder/head/face). I see my chiropractor weekly, which although he’s not “certified” (if that’s a thing?) in the holistic field, but he is a very big supporter of that concept. My adjustments, especially when my neck cooperates, are immediate relief… but as the day goes on, it all returns once again. I’ve seen him for over 10 yrs so he’s seen the progression of all this firsthand - we’ve even done rounds of supplements & diet detoxing to support the gut health which ultimately can have a direct impact on every other system in my body. All to no avail with major change in symptoms. He’s even gone as far to suggest that things seem so similar to his colleague who had Lyme Disease when she was in her 20’s - but her symptoms did seem to go into remission for the most part so are nowhere near what mine are now, which puzzles him.

I have also tried acupuncture & massage, which are wonderful as I’m laying there on the table, but unfortunately the effects don’t last & it’s like the moment I leave the appointment, the symptoms all slowly return throughout the day.

I continue seeing my mental health professionals who have introduced some of the other functional medicine techniques such as tapping & meditation but am yet to see the consistent relief with those either. 🙁

Hello @raepent1, I'm Rachel, it's nice to meet you. I see my Mentor friends, Sue @sueinmn and John @johnbishop have offered their help already, and while I don't want to overcrowd, I have a ton of thoughts after learning about your health conditions, obstacles and derailment of life. I want to start by saying I hear you, I see you, I've been you, and most importantly I want to support you based on similar experience. You have such a wonderful mindset and outlook which is truly something to build from.

Your bio tells me a good amount - "I was athletic, energetic & go-go-go all my life. I work(ed) in a mgmt role = maximum multi-tasking, never-ending stress & getting too much both mentally & physically while learning to navigate my new “normal”. This makes me sad because it sucks to not be that go-go-go'er anymore and have exhaustion from sorting laundry and being a one and done tasker, but you are not alone. My life began drastically changing from corneal disease and neurological chronic pain conditions like SFN and Central Sensitization Syndrome when I was 43, and by 46 I needed to walk away from my job in management. Everything changed.

Would you say you have gotten to the point of being properly diagnosed and treated, and are now trying to figure out how to live your "new norm" the best way possible? To find quality of life even though it may need to be reimagined?