Fibro ruining my life

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AsheleyV

New member
Joined
Apr 10, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
10/2013
Country
US
State
GA
I'm new to this forum, but I've been diagnosed for about 6 months, I'm a former personal trainer, and my hands are so affected by this, I know things will never be the same again. I wouldn't just exercise, I would push it to the limit. I feel like those days r gone forever and it just makes me cry. Even tho my mother has it too, I have very little support. Hers isn't as bad and my other sibling has kids and lives much closer to her so they r a priority. I've recently been on a prednisone taper and I thought all my problems were solved....well, I was wrong. I feel like I'm right bk where I started. I am 35 and I know lots of people have much worse diseases but I feel like my life is just over. :(
 
AsheleyV,
Is there any chance at all that you have RA arthritis? You mentioned trouble with your hands and I have heard that RA strikes the hands and then other areas before causing more symptoms in some people. My fibro has only caused me to have weaker hand muscles, but I don't have pain or other problems in my hands.

Have you seen a rheumatologist? You might want to get checked again if this problem does not get better. :)
 
I agree that it sounds like arthritis. I lost motion in both my hands from such bad inflammation, which got me the diagnosis of arthritis. But I got rid of my inflammation through diet. Sugar, grains, and dairy all cause inflammation in me, and by avoiding them constantly I have my hands back. But I'm careful, and I use Perfect Pushups for any exercise that has me holding my weight on my hands.

Yes, fibro takes over life and it sucks! A lot! But don't give up on learning your triggers. You can take your life back if you are careful, dilligent, and have a good doctor to guide you. I'm seeing a naturopath who had been very very helpful, making all the difference in the world. I saw many other doctors first, but they were not helping me. Just keep searching for your solution and don't give up.
 
You don't need to see it like that. There is still a ton of new things to be done in life and treatements are being searched every day. You just need to hold onto it and not give up!
 
AsheleyV,
Is there any chance at all that you have RA arthritis? You mentioned trouble with your hands and I have heard that RA strikes the hands and then other areas before causing more symptoms in some people. My fibro has only caused me to have weaker hand muscles, but I don't have pain or other problems in my hands.

Have you seen a rheumatologist? You might want to get checked again if this problem does not get better. :)

I have a primary, pain doc, and a rheumatologist....unfortunately I saw the rheumatologist before the steroids effects wore off and we both thought things were going to be ok...so I'm not scheduled to see him again until July and I'm getting totally screwed by his staff. My pain doc is friends with him and is having to personally call him so he can know what's happened. Still waiting to hear from SOMEBODY. One of the reasons I am so frustrated and pissed off. I love the doctor but had no idea that when I had a reason to call I was gonna get ignored like this by his office staff.

I have been tested, several times, for RA and so far they say no. So I don't know what to do. But I wear these gloves I got online for arthritis 24/7 for about 6 months now (I have several pair, they aren't all gross). Before, when I would wake up, just pulling at the covers was excruciatingly painful. These keep my hands from being terrible, but they still hurt. I could never do the things I used to be able to do. I have so much pain in my wrists, hands, ankles, and feet. My legs stay cramped pretty much all the time.

Just pissed off and mad at how the medical establishment treats patients like us. Captive audience for pain medicine...and you know they'll be back every month for that follow up bcuz they don't have a choice. Before this, I didn't even take OTC medicine. Nothing.

Thank u for the support
 
And you have no idea how frustrating it is to hurt and just want to rub your muscle or whatever and you can't bcuz your hands hurt too bad. I HATE IT!
 
Hi AsheleyV I also get hand pain as well. I also used to be much more active than I am now. It takes trial and error to find what helps and what doesn't. Everyone here is in the same boat so please know that you are not alone in this and we are here for you even if it is just an ear to listen to you vent. Hang in there and good luck. Mike
 
Hi Asheley, Have you ever been diagnosed with carpal tunnel syndrome? I first was diagnosed with bilateral carpal tunnel syndrome, my hands hurt so bad it felt like my fingers were going to snap right off. I ended up having carpal tunnel release which helped quite a bit. At the same time I started having pain in both arms and shoulders which I thought was from the carpal tunnel syndrome. Come to find out after my carpal tunnel release surgery what I had was fibromyalgia. I have pain all over my body and still even in my hands, but not as severe as before I had the surgery. My carpal tunnel syndrome was approved as being work-related. After the surgery I went to a neurologist because of all the other pain I was having in my body and he told me the two conditions (carpal tunnel syndrome and fibromyalgia) are probably related. You may want to see a doctor to see if you may have carpal tunnel syndrome.
 
You should take some analgesics, actually. Don't be afraid of becoming addicted to them. If it helps not to ruin your life, it's safe and recommended!
 
Fibro can be in any soft tissue of the body, which is everywhere...use different approaches...use, ice, heat, topical pain relievers, what meds you can tolerate.
I also use a device called mens which is more gentle than tens , i use cold laser..which dials pain back...as well as go to therapy when it hits hard.
Also use gentle stretching and light yoga...to stay as flexible as possible
 
This all started with a herniated disc at C5-C6 so I had a test for carpal tunnel before I found out I had fibromyalgia. The neurologist who did that test was the one who got me in with a good rheumatologist bcuz he felt bad that I had waited a month for the appt with him.
 
Hi AsheleyV I also get hand pain as well. I also used to be much more active than I am now. It takes trial and error to find what helps and what doesn't. Everyone here is in the same boat so please know that you are not alone in this and we are here for you even if it is just an ear to listen to you vent. Hang in there and good luck. Mike

Thank you so much. You don't know how much I need to hear that. The people in my life - family and other - are not very supportive when it comes to just listening.

It drives me crazy some days to not be able to work out and when I get so unbalanced that I'm bouncing off the damn walls. What have you done for your hand pain that worked?
 
You should take some analgesics, actually. Don't be afraid of becoming addicted to them. If it helps not to ruin your life, it's safe and recommended!

Oh I'm already on Lyrica and pain meds....that's what scares the hell out of me. The thought of being on them forever just to have some quality of life SUCKS ASS.
 
I can only hope that you will get better soon! Stay strong!
 
Try to find a support group in your area. Some hospitals have support groups for fibromyalgia. Funny you mentioned the cervical disc surgery as I also had that done about 5 years ago after being in a car accident. You may want to ask your doctor about the possibility of carpal tunnel syndrome and if you may be a candidate for carpal tunnel release. It worked well for me and took alot of the pain away.
 
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