Hello, it's me Meagan!

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Hello Y’all,

I have not officially been diagnosed with fibromyalgia; but after three years and appointments with my PCP, rheumatology, neurology, psych, and others with no answers and many symptoms matching up with Fibromyalgia, it is reasonable to say I might have it. I wanted to reach out and try and find a community to see if others have similar experiences and to find support to give and get in how to deal when things flare up. I have pain that sometimes feels like muscle pain, sometimes joint or even nerve pain that almost exclusively is in my extremities. Pressure makes things worse, so working at a desk really causes issues with those areas that are consistently in contact with my desk or chair; brain fog, recall issues, exhaustion, easily to hot or too cold (layers are soo important now a days lol), hot flashes. I don’t really have pain from tough itself, but there are times where a wrinkle in my sheets or clothes that are too textures are really uncomfortable. I only saw the rheumatologist once early on in my journey, and I think he was unsure what to think since I do not pain over all, so he sent me on my way. I think now that things have progressed over the last couple years, it might be time to go back; but I also don’t want to hear him say that he doesn’t know what’s going on since I really don’t know where else to go from here to get answers since I have exhausted most avenues.

Meagan

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Hi there Meagan,
good that you’ve found your way here and you and your experiences are certainly welcome & fit here. Various pain types, pressure exacerbates, allodynia, brain fog, exhaustion, temperature… : Everything you’ve described fits, so no wonder you think you might have it. (No sleep problems?)
My bet’d be that your rheum’d diagnose it now, or another one if he doesn’t.
If they find it’s nothing else then we need to find help, suggestions, the right treatments, how to self-care and pace. The diagnosis helps if you want meds to get pain down and you tolerate them. There’s lots to try, it’s finding ones which suit you. There’s also quite a few herbs & supps that help some people, same problem there tho. The main thing I plug is getting the right physio, from PTs that really know how gently to treat fibro - or whatever it is - your symptoms. The diagnosis also helps find others with similar symptoms, for ideas, but you’re here already :wink:

So as you’re hesitating going back, you cd just look for ideas here and elsewhere, compare, try the treatments you can, praps that will help already. And if you feel the diagnosis’d help you, e.g. you want to try some very specific meds, you cd then go back to the rheum, go to a 2nd rheum, and/or a 2nd PCP, and/or a pain doc, try to find someone more versed in fibro than your docs might be by phoning around or asking local support groups…

BTW my first rheum thought it was ankylosis spondylitis, it wasn’t, then cdn’t diagnose fibro (I think I didn’t fit in his image of fibro), but after quite a few neuro & endocrinologist exams/bloods a 2nd rheum did so 3 months later. After that I checked more and more of my symptoms with 25 sorts of docs (45+) but that mainly showed it’s not much else (30 diagnoses, but apart from fibro mostly what I already knew, plus a few important chance findings, things I now have to regularly check). That was important to me, but more important was trying 85+ treatments and finding acupressure and GABA as the ones that work best, aside from pinpointing loads of triggers, self-care & pacing…

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Takes me forever to fall asleep, hours sometimes. Luckily I have a good PCP and she’s given me meds. Taking Gabapentin and Cymbalta which help take the edge off the pain. Blood work, mri, nerve biopsies, thyroid ultrasounds and biopsies. It’s the not having an answer that is the most frustrating. I just want to know what’s going on so I know best how to deal.

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I could not tolerate meds high enough to take care of all the pain, so i combine low dosage meds with

Topical pain relievers
Acupressure
Occasionally acupuncture

At time PT , but i have a decent program for home now…i learned to treat trigger points myself , because that pain can be too high to wait three weeks for PT…

Weather can be quite an issue for me , so i use a micro current unit to calm that down

Also some supplements are crucial if it is fibro

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Hi, I am a registered nurse with Fibromyalgia, Sjogren’s Syndrome, Hashimoto’s autoimmune thyroid disease, moderate dextroscoliosis, arthritis, heart problems, high blood pressure, anxiety, depression. I have chronic severe pain. I quit work two weeks ago as I am 60 years old and am going to try to get SSDI dissability. Make sure your rheumatologist checks for autoimmune diseases by doing ANA, and thyroid labs. Good luck.

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Lmd,
you’re the first for ages I’ve seen using acupressure (apart from things like mats etc. at home). Oh dear, tho, every 3 weeks? I get/need 2x2h/week. Dunno if I’d be progressing even if I only got it once a week!..

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Hi!

I have so much blood work, thyroid a bunch since my numbers ride the low end. Not sure about ANA. I need to get back to my rheumatologist though since it was very early on years ago when I saw him.

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Hi, i think maybe you misread something…i do acupressure at home…

The 3 weeks was that if i had a locked trigger point pain, i learned to release that myself , since i could not wait 3 weeks for a pt appt…

I have quite a good fibro toolbox, because i have had this since i was young

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Ah, yes, a mat, pens, I’ve read up now in previous posts.
I must say professional expert acupressure goes much deeper, with slow but sustained success.
But it takes a lot of time & money…

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Aloha Meagan, I was working as an RN when one day I felt achy. I was one of the first in the fall of 2006 to get the flu when I am usually one of the last… Long story short, my aches and pains never got better, only worst. My PCP dx me with Chronic Pain Syndrome. Then in 2018 I contacted EpicGenetics based in Los Angeles where they have a ‘blood test’ that indicates if you have fibromyalgia or not. I scored 89 out of 100 so I definitely and finally had the correct diagnosis. The test is called F/M-a test and most insurance companies pay for it. Mine did back in 2018. You might want to contact them. They can ORDER the test for you if your PCP isn’t available or if you just want to know. I think the score below 50 can be treated with Cymbalta, Lyrica (a slightly better drug than Gabapentin or neurontin; works faster and has better effects than Gabapenta/Neurontin) I would highly suggest you contact EpicGenetics (310-277-4500 or 866-449-8591) or email then at BGillis@epicgtx.com. and submit a blood sample. It has to be there within 24 hours of it being drawn or at least that was the criteria back then. It might have changed. Dr, Bruce Gills is my hero! He has invested a lot of money investigating fibromyalgia and had a three clinic working on a vaccine that works on fibromyalgia patients. One in MA, Chicago and L.A. It’s the old BCG vaccine they use to give people back in the early 20’s-30’s to prevent tuberculosis. There is a ‘specific gene’ that is linked to fibro. So my aches and pain were due to fibro NOT CPS. I am currently on 60 mgs or Extended Release morphine twice a day with hydromorph (generic of dilaudid) for break through pain, however I was on 120 mgs TWICE a DAY!! And that just got me out of bed!! I also have Clonazepam for anxiety and it helps me sleep. *Interestningly enough, there’s a uTube of Dr. Gillis explaining why people who test positive for fibromyalgia are on the lowest scale of contracting Covid-19. We lack what’s called cytokines and chemokines. They are little proteins that signal the body to defend itself. In fibro patients we are lacking Interluten 6 or IL6 and IL8 which are the two cytokines that COVID thrives on. I thought that was extremely interesting and thought I’d pass that information on.
I have rambled enough… Please feel free to contact me should you need any support, emotional especially because we all know fibro changes us forever! Most Sincerely, Liz

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Thanks! I am going to look into this. If my insurance will pay for the test I will push to get it down.

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Looking for a thread to add new research to I stumbled across this old one

I can’t find this Gillis-video (any more? or can you?), only this short one advertising his cytokine/chemokine-test and I sincerely doubt it/him, since his cytokine/chemokine idea is still no more than a possible biomarker connection to date.
Compared to serious research (thread here) this makes Gillis’ lone position - & implication that we will likely not catch CoV - a dangerous one for fibromites like me thinking about whether to get the jab or not. (Of course he isn’t a fiend of jabs, as it was a BCG jab he touted for a few years as the miracle cure for FM… and as a carrot for people who “bought” his test, “enabling” them to take part in his lottery…).

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