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what's the worse case sinereo for someone with fms
4 Replies
s75044 - January 24

I have had fms for at least 18 years. i use a walker to go to the store rarely. i can't sit still, or stand in one place at one time. i am mostly house bound, can't work because meds. have been increased too much for me to do work correctly and trying to still manage pain. i have been unemployed for 2 years. the only really good pain relief is being asleep, unless the pain pieces the dreams. i thought fms isn't a progressive disorder, but yet i'm steadly am going down hill. My Rhuematolgist prodicts that in a year i will not be able to walk at all and in 3 years i will not be able to get to the toilet myself. possibly water therapy might slow it down, been there tried that and didn't get very far. So is this true?

 

AKFlyfisher - January 24

You poor thing, how old are you? I know I shouldnt ask that. I dont know if anyone on this forum knows what the worse case scenario is. I have had this for 10yrs now, but I am lucky and have been working all this time. You said you have a walker, can you walk on a treadmill, or do you live somewhere warm enough to walk around your house? I think not moving all these years is what is causing your muscles to atrophy/shrink.
Do you have anyone to help support you or talk to? Your doctor doesnt sound as helpful as he/she can be. YOU have to get moving. Movement does help, stretch, use a heating pad.
Please get some help if you can. Good luck to you.

 

JJ1 - January 25

Wow, your rheumatologist isn't a very positive person. Is there another one you can see in your area? Is there a fibromyaglia support group? I think your symptoms sound as bad as any I have heard about. Have you looked into physical therapy? Maybe they could help you get your mobility back. I was prescribed PT by my rheumatologist several years ago to help with a pain that wouldn't go away in my hip and it was wonderful. They take everything slow and easy and help you build up strength. The place i went had a pool where they did some of therapy.

 

s75044 - January 26

i'm 47, but feel like 74. my dad with some bad disks in his back gets along better than me. maybe i have to much of a support system, but somedays are worse than others. i have had 3 good days in a row this week. but i'm real stubborn when i hurt real bad. i have done water therapy for six weeks, thats all the insurance would allow. i did water arobics (after getting 3 steroid shots in the back that was the 1st time in a long time my pain was controlled to a reasonable level) for 5 months. oh i felt so good and than almost instantly the pain came back and i could hardly walk again and with a really bad ear infection. i lost 40lbs and that didn't lighten the pain either. i should got more muscle tone to hold me up.anyway couldn't pay for that anymore and not work and pay bills. did regular pt and made it worse. tried a few times. i think water works less on me, because i tense up in the water instead of relax. i do know how to swim,even have my own pool. but that's only good 3 months a year.

 

Fantod - January 27

Have you ever considered going to a pain specialist. I use one and have found him to be more useful than the rhuemotologist at times. He sees so many different kinds of pain that it sometimes forces him to think outside the box. I think you should consider this option. How about a physiatrist to work on an exercise plan with you? If water therapy is not working, they should be able to figure something else out that will. The more your muscles lose tone from inactivity you will be able to tolerate less and less activity. I'm not one to talk, I could certainly do better in the exercise department. But, I surely do think exploring these options might be useful.
Big hug and best of luck to you.

 

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