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Living With Fibromyalgia - Online Support Group

Figuring it out

#1

Greetings:
I’m still getting to “diagnosis” as I have PCOS and was seeing an endo. She noted that what I described sounds more like Fibro. Lovely. I’m not even sure I believe that, but as I age, and because I’m 4 years in with pain, I’m willing to see an rheumatologist to figure it out.

I’ve been in pain for that long, but it’s surprising that I didn’t take the process of elimination. The thing is: I really thought I had a thyroid condition. Both my dad and her sister did, so I figured it was a matter of time. On the other hand, their mother was in a wheelchair for a significant period of time, and they said it was “arthritis.” Since that was 1950’s and all, I’m betting it was probably more osteoarthritis if anything-something really debilitating.

Curious if PCOS then leads to other conditions-it does, but not of the arthritis variety…unless it does…and then, wondering if “fibromyalgia” could also be a sub condition of arthritis. I’m just ruminating. I could be wrong. Completely wrong.

I don’t have tingling, I don’t have shooting pain. I don’t have “flares” because I’m not clear what those really are. For me, my pain is deep in muscles, or joints, or other muscle-like areas of my body. It first noticed it might be something OTHER than pain from working out (and I hadn’t worked out that hard for that type of pain in the last 4 years, so I was just covering for myself) when I couldn’t lift my shoulders. At all. Both of them. It lasted and lasted. I was curious why they hurt so bad, so deep, and for so long, when I hadn’t been been lifting weights. Maybe it was a low D level I pondered. I took more EU’s of D…and only a slight improvement.

I had plantar fasciitis for a long time, so any bottom of foot pain was almost daily and I ignored it.

But you know, despite having many kids, and being used to “fatigue” I started to feel so tired-like I did when I was in my first trimester…that total and complete exhaustion. Again, I thought that was weird.

So: fatigue, feet, arms…and never mind that my hips, both at the same time, had hurt often. Again, I thought it was residual or “permanent” pain for the gift of bearing children. They were fat ones after all, and large. But, debilitating? That couldn’t be right. And then, once in a while, I couldn’t stand up straight. Again, why? Haven’t done much during that time except run on the treadmill. That must be it. I’ll stop. Still, it persisted.

So: hips, back, feet, shoulders…and then the pain in my finger joints. But, I type alot, so that must be it. But same typing quantity: one day they hurt immensely, the next they don’t at all…why?

So, hands, back, hips, feet, shoulders…and then my knees sometimes feel like they are going to go backwards! They are in pain for literally NO reason. I can stand “too long” (yet, I have no idea the time limit) and, pain.

And I feel cold when no one else does.

And in the past 4 years anxiety has increased so that I take a valium or something similar just to fly or go to the dentist-two things that typically didn’t cause me panic!

So, feet, hips, back, shoulders, knees, cold, anxiety, panic, and the pain that now means some nights I don’t sleep well, and I am restless. I can’t say what caused the pain (heavy lifting? Working out? Walking too long??)…but it is torturing me nonetheless.

Does ANY of this sound familiar?

Since I have a family history of “arthritis” of the wheelchair kind, I WILL see a rheumatologist, but am curious of others’ experiences. Anecdotal evidences really speaks to me.

Thanks!
Eight

#2

Hi so I was diagnosed with fibro 27 yrs ago and the pain wasn’t to badly I worked at the post office for a few years after being diagnosed but then when I couldn’t handle the pain anymore I had to retire I really didn’t understand the flares because I was in constant pain for yrs did alot of things mostly physical therapy but nothing has really worked for me I was diagnosed with plantar fasciitis they put me in braces tendonitis in the arms put me in braces but the deep deep muscle pain I would keep feeling keeps me from doing mostly anything my fibro moves around the body I had it so badly in my legs I would use a scooter to get around but then it moved to my back then my arms and right now in my hands but my whole body hurts meanwhile but I think everyone fibro is different and every doctor has to treat you different cuz what works for you doesn’t work for me I’m sorry if you get diagnosed with this horrible disease because doctors don’t really know what the hell they are doing with this horrible disease they just send you home with empty thoughts I hope you have a great day

#3

Thanks Kitty. I hear ya. The weird part is really the migrating pain with unknown origin. I wish it was an easy fix.

In the coming months I’ll be seeing a rheumatologist. The medical community here is fairly good so I’m imagining if they think so I’ll have a diagnosis. My endocrinologist said my symptoms sound like fibromyalgia.

Can you tell me what a “flare” is in your experience?

For me, I’m not clear what those are but I have more intense periods of pain which can last
1-3 days or so, then back to average daily pain. Does that sound familiar?

Thanks again.

#4

Hi Ben well my flares r terrible but for the longest time I was in one for years it was terrible I couldn’t move the pain was really terrible I want to say it lasted about three years then finally it tapered off but now the flares pop up to where I just can’t move I try to take really hot shower at the time and keep the heated blanket right by me every thing hurts and can last for up to 3 days nothing else helps I take pain pills and marijuana CBD oil but nothing has helped the only thing that I think about is it going to be over soon and then the exhaust kicks in I even think suicide thoughts but then I get through it again and boy glad I do just be good to ur self and everything soft heat heat heat

#5

Everyone’s flares are also different. My wrist pain (9 on the scale is 1-10) have never lasted more the 12 hours. My average daily pain on meds is about a 5. I can have flares of 7-8 pain level that last days to weeks. I feel like a flare is a significant increase in pain level for a certain amount of time.