working with chronic pain, fibromyaliga/lupus

CHATSDALE · Jun 2, 2005

are you on vitamin b12??? i can not work if i don't have this..of course i take every OTC pain reliever...sometimes i feel like i cannot move another inch...however i have also found that the more there is to do the better i do...if you go to a less active and stressful job you will increase the fibro/chronic fatigue...you are making the right decision at least for now by trying to stay as active as possible

rehab nurse · Jun 2, 2005

can't say that i have any advice for you, but you're not alone. i have lupus, and i am in a flare and completely miserable. i have chronic pain not from lupus, but from two herniated discs in my lumbar spine and sciatica. i work rehab now, and am in school to finally get my RN after being an LPN for 9 years. i am only 27, and have suffered from lupus since i was 23. i would love to work in ICU when i get my RN, my doc on the other hand thinks even the job i have now is too stressful.

i usually take ultram for pain if i have to work, and darvocet/skelaxin for when i am home. ultram is the only thing that doesn't space me out. lately however, i have been having to take lortab just to get some relief from the pain. i have missed a lot of work lately, and it is getting harder to make ends meet (i am a single mom to two preschoolers).

i wish i had some advice for you, but i don't. i just don't know many people with lupus, and i wanted to give a little support. i hope you find some relief from the pain. if you are just in a flare with the lupus, maybe things will improve and you can stay at your job? i am not sure how your pain is with the fibro. maybe you need some time off and then return to work?

i sure hope you find some relief! sorry i couldn't help. take care of yourself!:icon_hug:

babynursewannab · Jun 6, 2005

Its funny you mention the effect or "non" effect of the drug on your state of being. When I am going through a (very rare) severe bout with my fibromyalgia, I take demerol. I know, I know....everyone says "WOAH...Big guns there Nelly!!!" However, and this only happens while I'm having the flare-up, I feel totally NORMAL and have no pain. In fact, my rhuematologist did a reflex assessment on me while I was on a significant dose...hand/eye, rapid response, etc...and I scored higher than average.

Its a wierd brain/body chemistry thing, because when I'm not having a flare-up, I'm stoned on the stuff. Go figure. :bugeyes:

What works for me on a day-to-day basis is 800mg of ibuprofen prn. Its taken a while for me to learn my body with this, but I also take it when I start to feel sluggish. I catch muscle pain before it starts, the fog clears and I'm more awake . That's not on the label! :chuckle

-Alyssa, RN

z's playa · Jun 6, 2005

Its funny you mention the effect or "non" effect of the drug on your state of being. When I am going through a (very rare) severe bout with my fibromyalgia, I take demerol. I know, I know....everyone says "WOAH...Big guns there Nelly!!!" However, and this only happens while I'm having the flare-up, I feel totally NORMAL and have no pain. In fact, my rhuematologist did a reflex assessment on me while I was on a significant dose...hand/eye, rapid response, etc...and I scored higher than average.
Its a wierd brain/body chemistry thing, because when I'm not having a flare-up, I'm stoned on the stuff. Go figure.
-Alyssa, RN

Sorry to hear about your illness. I'm curious....what form of demerol do you take and how much do you need to take? Demerol is the worst kind of drug to take by mouth so I was just wondering. :)

And why did you take it when you weren't having a flare up? Maybe just trying to keep on top of the pain?

Z

babynursewannab · Jun 6, 2005

Sorry to hear about your illness. I'm curious....what form of demerol do you take and how much? Demerol is the worst kind of drug to take by mouth so I was just wondering. :)
And why did you take it when you weren't having a flare up? Maybe just trying to keep on top of the pain?
Z

Thanks.

Like I said, the serious flare-up is really rare for me. I haven't taken it in...jeesh...2 1/2 maybe 3 years. Since then is when all the studies started coming out. :crying2: I don't remember the dose. I had taken it for some other pain thing...not the fibro...I can't remember if it was injury or surgery. I had a rash of both around that time. That's when I discovered the positive effect it had on my fibro. Since then, I've been a large-dose ibuprofen girl. (I was editing my post to add that when you wrote yours).

z's playa · Jun 6, 2005

Thanks.
Like I said, the serious flare-up is really rare for me. I haven't taken it in...jeesh...2 1/2 maybe 3 years. Since then is when all the studies started coming out. I don't remember the dose. I had taken it for some other pain thing...not the fibro...I can't remember if it was injury or surgery. I had a rash of both around that time. That's when I discovered the positive effect it had on my fibro. Since then, I've been a large-dose ibuprofen girl. (I was editing my post to add that when you wrote yours).

Well I get the migraines. :rolleyes: :chuckle

Ibuprofen is my best friend. I'd hate to see my stomach in say 20 yrs. :uhoh21: I avoid the ER at all costs and treat myself sometimes for days. Even after the 72 hour mark.

I couldn't imagine having to deal with fibro too. Stay strong ! :flowersfo

Z

hollyster · Jun 6, 2005

Its a wierd brain/body chemistry thing, because when I'm not having a flare-up, I'm stoned on the stuff. Go figure.
-Alyssa, RN

Actually that is the way they work. Narcotics hit the pain receptors if no there is active pain it hits the CNS hard. People in pain actually think much clearer when the pain is properly medicated. I would rather have a care provider who takes lortab or percocet on a daily basis treating me than one that is in terrible pain. I was on our hsp pain management commitee and I was always preaching on how important it is to keep our pts pain free but I did not follow my own advice. I was injured five years ago at work. I herniated two disk broad based at the nerve root, tore another and cracked vertebrea. I had several epidural steroid injections until the lower part of my spine adhesed due to the constant swelling. The only surgical option given to me was a four level fusion with cages and the possibility that I would lose even more use and feeling in my leg then I already had. I would not take any pain meds other then NSAIDS then Bextra. Eventhough the logical side of myself knew that I should not live with that much pain I would not take narcotic medications for fear of being unsafe. It finally caught up with me. My weight dropped, I could not sleep, my leg would contract all night, I was at my breaking point. There is the old saying that "pain causes the death of the soul" I firmly believe it. I finally found a wonderful MD that was willing to address the reasons for the pain and not just throw drugs at me. He performed caudal injections and then an endoscopic diskectomy on me and for the first time since the accident I have reflexes and feeling in my foot,ankle and leg. The pain is terrible but if I take the medication I am human not in the horrible pain.

He put me on narcotic pain meds and muscle relaxers and he was able to get it through my thick head that I was human by asking me that would I allow one of my pts to suffer the way I was. I felt woozy for the first few days but it was amazing how much more clearly I could think and that I was able to for the first time in five years I was comfortable not pain free but it was more relief then I thought possible. At times I feel as though I somehow failed by having to use medication, the last thing I want to be is a chronic pain stereotype but without the medication I am afraid I will go back into that horrible black place. I am now able to be me again.