Progressive pain under treatment?

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VegAthLes

Member
Joined
Jun 20, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
FL
For those of you undergoing treatment (pain management) for your fibro, I have a question. Have you found the pain to be progressive in your body and life?

My pain has been dramatically progressive over the last two years, but I was not receiving treatment until this summer. Now that I have pain management treatment, I'm curious as to what I should expect. Will the pain continue to progress and my meds/treatment will continue to be adjusted, or is it more likely to kind of stay where it is now that I'm getting it under control?

I know there are a lot of factors, but I'm kind of looking for "This is what I experience" kind of answers.

Thanks!
 
I do.

I have been trying to figure out what is wrong with me for almost four years. I got pneumonia a few times and was diagnosed with CVID and inject plasma to pump up my immune system. CVID can have some joint pain but my pain progressed, even with treatment. A year & a half ago a rheumy diagnosed me with Fibro (3rd rheumy I saw). I have mixed feelings about the diagnosis as my blood work is full of other people's plasma so I am not sure how accurate the RA & Lupus testing is - time will tell I guess.

Since then - my pain is way worse. I have whittled my work schedule down from a very physical one to more sitting or less movement (though I exercise away from work to keep moving). Winters are absolutely terrible for me so I am really enjoying summer right now but pain is always a constant. We have snowy cold winters where I live and I can no longer tolerate cold. Summer I can do more but have to be careful not to overdo it. I strain or hurt way easier and it lasts longer than before. My evenings are down time because I am often pretty tired. Lying in bed at night sometimes for an hour for the humming or pain in my body to simmer down so I can sleep. Mornings...ugh...takes time to want to get moving.

The only drugs I take are amitryptiline so I can sleep and to reduce nerve pain & Tylenol for headaches (which I get often) as my stomach is sensitive - ibuprofen would work better but I only take it for the killer headaches. I have tried a couple of other fibro drugs but they did nothing for the pain and the side effects sucked. Once I ran out of amitryptiline in between prescriptions and my pain was HUGE - surprised me because I was thinking it only really helped me sleep, or at least get back to sleep when I woke up. So I guess....it could be worse ???

Activity levels, diet, rest & sleep - all factor in here, as well as weather/season. If I don't rest/sleep enough I'm hooped. If I eat crappy, same thing. Hydration as well. Everyone has to experiment I guess with what irritates thing.
 
I'm sorry your pain has gotten so much worse. I have the opposite seasonal problem you do. I live in central Florida, so we have mild winters (which are great for my pain levels), but I can barely go outside in the summer because I can't tolerate the heat!

I hope you can find a treatment plan that helps you!
 
I'm under pain management with Elavil as well and it does help about 25-30%. Also very mild tylenol/codeine which helps enormously and quickly and probably saved my life because the pain was tearing my life and body apart from never having relief from the extreme, impossible to live with pain. The pain left me so exhausted and scared everyday that I could barely move let alone walk or do anything normal. It doesn't fix everything and I do still have extreme pain days but I can walk and sit up, things which I could barely do before without having a physical/mental breakdown. I'm still at the point where I need a wheelchair somedays and other days (although not recently) I can go out and do some shopping. I'm only 37, this isn't normal. I was healthy and fit and ate well but started getting weaker and weaker (probably not enough protein in my diet or something else) then the pain started and that was the beginning of the end. My meds were only upped once and won't be again. But the meds significantly increased my quality of life. I use to never take pills and was all about natural ways to remedy but when things got very serious they kept me from multiple visits to the hospital and the doctor and days of agony. I still have days of agony but it's not as extreme was it was. And for me the pain is getting worse. So it can get progressively worse. Although I hope it's not the same in your case.
 
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