NFA QuestionsCategory: QuestionsCan FM be Progressive – Or Could it be a Second Condition?
michelep asked 2 years ago

I do realize that nobody may have an answer, but my pain (I was diagnosed with FM 6 years ago) has gotten steadily worse over the years. I can’t take medications, and have been treating it with simple OTC Ibuprofen and Tylenol (occasionally with a very low dose of a mild muscle relaxant called Tizanidine that seems to help and not cause issues), exercises, meditation, and have tried acupuncture (with not-so-good results). I have managed. I’ve had to. But it’s gotten to the point that I can hardly walk and I can’t do the things I must do: I can’t get in and out of the shower very well, can’t get groceries, do laundry, clean house, take out trash… I fear that if this continues, I will be crippled before long. I haven’t had good luck with doctors – they seem to think I’m faking or exaggerating the pain. None will refer me to a rheumatologist. I’m overwhelmingly frustrated! But my question is this: is FM normally progressive? I’ve researched it, and not found anything that suggests it. I wonder if I need to be checked for possible coexisting conditions? Thanks for reading.

Rose Bee replied 2 years ago

Hello

Have you been tested for a small fiber neuropathy? This would require a small 3 mm punch biopsy. Have you been screened for gluten sensitivity? By this I mean antigliadin antibodies. 

https://www.healthrising.org/blog/2020/07/08/fibromyalgia-chronic-fatigue-syndrome-small-fiber-polyneuropathy/

2 Answers
Rose answered 2 years ago

Hello
Have you been tested for a small fiber neuropathy? This would require a small 3 mm punch biopsy. Have you been screened for gluten sensitivity? By this I mean antigliadin antibodies.
https://www.healthrising.org/blog/2020/07/08/fibromyalgia-chronic-fatigue-syndrome-small-fiber-polyneuropathy/

Caap answered 12 months ago

Perhaps you have another condition that is causing the degradation? Here is my story, in case it is helpful:

I was diagnosed with Fibro many years ago and I too had progressively worse pain, fatigue, and debility. The pain got to the point where I was only sleeping 2-3 hours a night, if I slept at all. After years of this, I was a shell of my former self. I kept looking for answers, asking for tests and such, but my former doc was urging me to just accept my predicament.

My NEW doc and I figured out last year that the worsening pain and fatigue was from damage to my hip and nerve issues in my low back from arthritis. This pain was amplified by the Fibro, but not caused by it. Once I got a steroid injection in my hip, which was the worst offender, the pain went down enough for me to be able to sleep better. After about 3 weeks of the slowly improving sleep, I started occassionaly sleeping 6 or 7 hours a night. After about 3 weeks of that, I started to occassionally wake up feeling refreshed.

I still have bouts of exhaustion, especially after exertion, and pain all over. But it is much better than it was, and I am able to do light PT enough to improve, and still function.