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At What Point Do You Question Fibro

At What Point Do You Question Fibro

Hello all! I was diagnosed by the Mayo Clinic with Fibromyalgia/CF and Centralized Sensitization Syndrome. My understanding from the medical professionals there is that CSS is an umbrella type term that encompasses Fibro and CF, etc. To be clear, I was not diagnosed with ME which I've read appears to be a more severe type of CFS. Either way - I question my diagnosis and here's why.

Yes, I have pain but not the type of pain I read on here that others seem to have. My pain feels more jointโ€ฆ read more

posted about 4 years ago
A MyFibroTeam Member said:

Hi @A MyFibroTeam Member! My apologies for just getting back to you now; I've been going through a rough patch with my Fibro and finally feeling better after 5 days of rebound.

I understand going to the darkest places and worrying about the worst options. I was there when my symptoms started getting worse (I've been diagnosed for almost 30 years). But there is not need for that unless you develop the very specific symptoms of those conditions. Fibro is not very well understood by those who don't have it - that's why we have each other in this group :-)

My rough patch actually had mostly to do with my arms and hands. I WAY overdid things last Saturday (but had a good time doing it). My first symptoms were pain and shaking in my arms and hands. By the next morning, I could not move them (or anything else for that matter). It took 2 rounds of my meds before I started to feel better. Spent Sunday afternoon and all day Monday with an ace bandage on my right hand/wrist so the pressure would help to calm the tendon that runs to the thumb. I also had to use some of the Voltran gel that I have left to help (even though I'm not supposed to use it anymore). Even now I have some residual tingling, numbness, and weakness in my hands.

Because of the hand symptoms, I, too, have had the EMG; possibly one of the most painful things I have ever been through. Both arms and hands bled from the needles. And, of course, it didn't show any issues. But then again, it wouldn't. EMGs look for damage to the nerves. Fibromyalgia isn't damage to the nerves - it's overactivity of the nerves! They're working overtime! And that is why you're fine motor skills can be affected!

It's all part of why it is so hard to diagnose and treat. And although it feels very neurological, you won't find a neurologist that will help very much. The #1 symptom you have to treat is the pain and I have found that a rheumatologist has been my best option as far as a specialist that believes you are having the symptoms you have and treatment of said symptoms.

I hope this helps. You're on my team, so feel free to reach out any time you need it. ((((Gentle Hugs))))

posted about 4 years ago
A MyFibroTeam Member said:

I've experienced everything that @A MyFibroTeam Member has written. She mentioned the pain down one arm. This is how I noticed mine began many years ago. (early 1990s) I had all the neurological test, like EMGs as well and all my results were fine too. This is truly a mind boggling issue to have, especially when you are first diagnosed. These days, my body and mind are a wreck but trying to take care of myself the best way I can.
Gentle Hugs to All!

posted almost 4 years ago
A MyFibroTeam Member said:

Please know these things happening to you are not abnormal for fibro. You have trigger points but you also can have many other things develop. I have through the years had my hands tremble, my shoulder hurting in the joints, prickly pains in my toes. migraines, stiff joints, hip pain and I could go on and on. I have had it for over 20 years, and now I have arthritis which causes even more problems. I take one day at a time and some days are so bad and some days are pain-free. Try and keep your head up and we are with you.

posted about 4 years ago
A MyFibroTeam Member said:

Fibro sucks...i have all your same symptoms. My hands started 3 months ago and still feel like i have to pop them constantly. My arms some days feel like they weigh at ton and i cannot even touch the sides of my elbows because it hurts so much. I too have had MRI (with and without contast) 2 Neuro's look at me,two EMG'S (perfectly normal)
and most recently xrays on my hands because i swore something else had to be going on. I have shooting, burning, vibrating pains in my of my body, though it mostly affects my left side more than right ( i say that now, but tomorrow it will switch up) I question my Fibro diagnosis all the time...but i have recently decided to just go with it and try to find work arounds. Sure, i have horrible anxiety about it, but this group helps by sharing their stories and so i don't feel alone, i know there are others like me.

posted about 4 years ago
A MyFibroTeam Member said:

Fibromyalgia is different for everyone which makes it a unique neurological disorder. There is not a textbook description for fibromyalgia or Neuropathy. Therefore, you cannot say it doesn't effect the same way it does someone else. This makes this disorder more peculiar & interesting & mystifyingly hard for doctor's to diagnose. However, there are certain similarities that make it possible to diagnose. The more a person reads, the more mystifying so my suggestion is to relax.

posted about 4 years ago
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