I have fibro and hypermobility (Ehlers Danlos Type 3) and I get these sometimes. My theory is that since we have probs with our connective tissue, this also impacts our blood vessels and circulation. I would talk to your doctor though. Some type of support stocking (!) may help you.
This is ridiculous, I know, but bear with me. It's in the vein of how you possibly try to describe to other people what living with FM is like.
For those of you who have read and/or watched the Twilight series, there is a vampire character named Jane who belongs to a group of evildoers called the Volturi. Jane's special evil power is to be able to stare at someone with her beady red eyes, whisper "pain" in their general direction, and make them collapse/writhe from pain without ever touching them. (Seriously - I could not make this stuff up!)
Stay with me...whenever I read or watch Twilight, I'm sorry, but I can't help think of Jane as representing (to me) FM!!!! Metaphorically speaking: they are both things that we may not realize have such power until we encounter them. When we least expect it, something that shouldn't be painful, all of a sudden is excruciating. We get zaps of pain out of nowhere. We are doing fine one minute and the next ... ouch! Pain is suddenly worse or has moved somewhere else or is in multiple locations now!
I also think of Jane's powers as not unlike how FM entered my life and quite literally brought me to my knees. Or, a way of describing to someone what a "10" level of pain day looks like because hopefully they've never seen me that way in real life!
I'm done now. I hope my questionable literary comparison doesn't strike you as too weird. (I was not even an English major -- ha!) Maybe more than anything it demonstrates is how pervasively FM enters your consciousness -- how thinking about symptoms and managing them can take over your attention even when you are supposed to be having fun.
Hi, everyone. As usual, I'm in and out as I can be.
Linda, so sorry to hear about your loss.
Cece -- when are we not having tummy issues, huh? Sorry they've become so problematic for you & hope you can get the insurance situation resolved.
As for me, bad pain lately. I've increased my exercise so that may be why. Have been doing a lot of yoga. I am not perceiving fatigue or pain when I do it but the pain may be telling me I am overdoing it. I just hate to give it up because it feels better physically to stretch and move, and emotionally as well and I look better when I do it.
I never have pain in that collarbone tender point or front neck, but it is killing me today. I usually try to avoid NSAIDs, but this week has been a bonanza. Headaches also. It may not be all the exercise causing it. Who knows? It's been so flipping cold here, for so long, worse than our usual MN winters. That can't be helping.
On the blessing side of things: the sun is out today, I have an awesome family, friends, and dog, a roof over my head, a car that runs and food to eat. And all of your help & support!
I want to add to what everyone above is saying. There is hope and you won't always feel as bad as you do today. You may never feel completely 100% again, but you can feel better -- a lot better -- once you find out what helps your body and a lot of the tips above are excellent ones!
I don't think anyone here mentioned it yet that I can see in the above responses, but please get your vitamin D levels checked. This is the single most important thing I've done to feel better -- this has helped the most.
I am not a doctor, but I can tell you what I understand my doctor told me. If your vitamin D level is below the 50-60 range, take supplements until you get to that range. You may need to take 5000 IU a day in order to get your levels up. This helped both my pain and fatigue tremendously.
MiMi from our community is the greatest advocate for this, and I agree with her! Also, there is research to support that this helps us.
it's officially 1 degree above zero her in MN where I live -- may be colder where Cory is -- I don't know. However, the windchill is already -22 heading to -35 or -40 tonight. Was going to take the kids to downhill ski lessons tonight but I think we will pass since exposed skin can freeze in 5-10 seconds with this weather. Definitely one of those times I feel like "why do I live here?" It's worse with FM of course bc of increased pain with cold weather and the possibility of slipping on ice. Plus its hard to be active when the weather puts you into hibernation mode. Yawn!
So glad you posted and it's good to know you are out there.
I agree the people on this site are awesome. I am a relative short-timer but I've gotten so much support and learned so much already. Many people post, some just read -- whatever works for you. As Nancy B said, we all have to form our own toolbox, we are all different, yet hearing what worked for others helps so much. I can't tell you the number of times a week I think "this is weird, but my FM friends will understand" and they always do.
Take care & soft hugs, Meg from MN, USA (south of Ontario but not really warmer!)
This is something I wonder about in trying to figure out the mystery of FM. (Why do I bother, BTW?!? Will the mystery ever be solved?)
I know many on this site who have FM have diagnoses that are viewed as "bona fide" auto-immune disorders (Lupus, Sjogren's, RA, etc.) I assume then that your rheumy or whomever did blood work and you had positive anti-bodies for whatever you were eventually diagnosed with, and the blood work also indicated a high SED rate (also called ESR). As I understand it, a high SED rate is indicative of a level of overall inflammation in the body.
The last time I had my SED rate taken it was 5 (very low = little or no inflammation). Yet, when I take NSAIDs like Ibuprofen or Aleve that relieve pain by reducing inflammation, I do typically get some real relief.
I am trying to figure out whether I am "weird" among FMers in not having inflammation (at least when tested).
Have others had high SED rates when tested? What were you told about this relative to FM?