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Sick with fibro?
donzieruth61 posted:
I have had fibro for over 15 yrs it has gotten worse over the years sometimes I wonder if I might die anyway wondered if anyone else felt burning like when you excersise and feel the burn ya no only extreme weakness with it especially in the legs to the point my legs won't hold me up and I just feel sick sorta like I just need to lay down cause I feel so sick
missist responded:
Hi Donzieruth..
yes. Actually I have burning in my thighs that feels like I've been working out--when I haven't. It is worst if I sit in car long. I just this week found out it is not even fibro. I have sacroilitis-- which is an inflammation of the sacroiliac joint. The joint that holds your pelvis to your spine. And my legs feel like dead weight if I overwork. I found out that there are particular movements I should not make and that I need to ice it. I have ice in a pillowcase and I put it on my lower back for 20 min. Physical therapist told me to put heat on my front of my pelvic area if the ice bothers me since I have fibro.

She works with a lot of people who have fibro and she says this problem is not fibro but was probably caused by pregnancy or holding babies on my hip or standing iwht one leg higher--in any case-- its been a long time since i've had babies but I was working out a lot about when this flared up--and holding my grand daughter.

here's the thing--not every pain is fibro. It is a a real pain to go get every pain checked out--and I don't like to do that--but I've had it 30 years and I thnk the past 10 years I've been to doctors a lot more than I used to. Also more of my problems have been something else than fibro.

So-- long story shortened--If you have a specific painful area -- get it checked out it may be treatable or you may be making it worse by not treating it.

bette_kaffitz responded:
I bet you could make a very long list of all the things you could do 15 years ago, but cannot do now. Putting up with pain is definitely on that list, isn't it?

When you think about it, this makes perfect sense. Your body has been fighting a war for 15 years. It is tired, but it gets very little relief from sleep. Those pains you had way back then are probably still here. But now, there are so many more pains in so many different parts of your body. It's like you are always on guard against the next attack. And it's hard to be on guard, because you don't know where your enemy (pain) will strike next.

One of the big problems with most of us is that we don't listen to the body. Your body just told you it was sick and needed to lay down. Did you lay down? I hope so. Every time you ignore your body's signals (and I just bet that's happened a lot in the last 15 years) you are causing microtrauma somewhere on that poor body. To top it off, you are telling your brain to crank up the pain chemicals over and over again. And that makes the NEXT incidence a little worse. (Who cares that the "experts" say fibro is not progressive. We know they are wrong. We DO hurt more.)

Find out what makes things worse. Either stop doing those things or cut back on them--a lot. (I cannot do repetitive things like vacuuming.) Find out what makes things feel better. Do a lot more of THAT. (I take 2 showers/baths a day and really use my heat packs. This all helps me. You have to find out what helps YOU.)

You wouldn't dream of walking on a broken leg, would you? Your fibro is just as big a deal. Treat it and your body with respect.

missist replied to bette_kaffitz's response:
Bette makes a good point about listening to the body there--I did not know my latest pain issue was caused by that joint at all.. I thought I had blown a disc. I had an mri to find out. I did have issues on that mri but that is not what was the real issue here. i also had no idea how many muscle groups are effected by one joint--well 2 cuz I have it on both sides but right is worse.

This thing has me walking with a cane and I never even knew it was hurt. Now that I know what it is, therapist is teaching me to recognize when I need to do certain things to try to get it back in sinc and to ice it etc. also exercises, and positions I need to use and things I must not do (which I'm not sure about that--cuz its about impossible not to do some)
Anyhow I can now feel the real issue instead of all the smoke and mirrors its been causing.
ajnsmom replied to bette_kaffitz's response:
Great advice, Bette! I have learned to pace myself and am finally getting to the point of knowing how much I can do before it's too late.

Linda S. (Jax, FL)

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Welcome to Our FMily! My name is MeMe, I'm an FM suffer of 19 years, along with autoimmune diseases & other conditions. ... More
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