Hello.
I just need to vent. i cannto take this pain any longer. I know you can relate. I have constant stiffness and tigthness in: toes, balls of feet, groin, thighs, sides of knees now, shoulder, elbows, neck, hips, lower back, palms. I do nto know what to do. I am on week 8 of azulfidine, takes 12 to work if it works. i cannot take this. I cannot function. I ams till working full-time as a teacher, 8th year...but i do not think i can take anymore. I am dying to work out...DYING. But i am worried that i will cause more damage. I can work through the pain as i ahve an incredible threshold, but it does not seem to help, seems to hurt the pain when i exercise. Even light exercise, i mean really lgiht. Swimming even kills my shoulders for days. I am at a loss. At work i have to make my kids go fetch me things, bring me things. I cant' get up from my seat to go over to them. I am not working to my potential and it sucks. I have talked to my principal and he is not sympathetic, does nto want to hear about it.
I broke down today and took 20 mgs of prednisone as i was told i could if it gets really abd like this. i thought maybe it will help get me through thanksgiving. i gained 10 pounds in september when i was on it but i was on 40. My blood tests are still negaive...i have no visible swelling, but so much pain. I slept from 4-7 yesterday then from 9-7 this morning. it is not normal. I am at a loss. my husband has to do almost everything for us. I am so down abot it. I am so afraid he will be sick of this soon. I do take cymbalta already, wodnerig if i shoudl switch to welbutrin. I can't function like this much lnger. And i can't file for disabili8ty until i have bene out of work for 1 year. Doesn't that suck? What do i do in the mantime, pan handle?
Thank you guys,. Thanks for listening.
Alison
Do you have a prescription for a narcotic pain medication to help you through this rough time. if you just use it when the times are tough the chances of becoming addicted are slim. I know how you feel with all the stiffness. I dont have the swelling as much as I have the stiffness. There are times that I have to have a boost to get out of the chair. I know too that excercise can make it worse. Can you just do a little to work out the stiffness maybe? Have you tried massage therapy?
You have to be off work for a year to get disability? Have you tried doing it with an attorney? Do you definatley have the diagnosis of RA? Do you also have Fibromyalgia?
Lesle
Hi lesle.
Thanks so much for replying. I just spoke with my doctor. She wants me to see this nuro-muscular neurologist...i just called him. there is ONE little problem...he doesn't take insurance AND, being this is manhattan and all, he charges 850.00/ You hear me...eight hundred and fifty dollars. ibegged my case with the recpetionist and asked him to consider a sliding scale, since i will get reiumbursed some of it.
I am told it is not fibromyalgia, but seronegative spondyloarthropathy which basically means i have pain that reponds to prednisone so it is inflammatory, but no RA factor. At this point i would liek to have something just so that i can get on a treatment protocol. Maybe the pred will work. It would be nice. I dont really buy into fibromyalgia as a diagnosis, i think it is a set of symptoms resulting from an underlying cause that i am desparately trying to determine.
I might have to do a narcotic-type thing. I really don't want to but i can't live like this. My flares do not de-flare, as i have posted before. It jsut gets worse and worse...seems the only thing that helped at all so far was the pred, 40 mgs, in the fall. when we tried 30 in the summer it did nothing.
The fatigue is a new visitor. I might have gotten it from the combo of klonopin and tramadol. I won't do it again that way. I am going to try and do a light work-out. maybe the elitptical and the bike 10 minutes each. Esp now that i am on the pred!
Thanks again for listening. Happy Holiday.
Alison
0.00.....You have got to be kidding. And he does not take insurance. That sure sounds weird to me. I hope that the Prednisone helps you in a few days. Stick with it then taper off it. Dont ever just stop taking it. You think you feel bad now, that would be a near death feeling for sure.
You know fatigue is part of the disease process, especially during a flare.
Lesle
Alison [Nyalie]:
This post is a little late - and hopefully by now you've found a solution to your problem. I feel for you, as I am sure we all do.
I'm on the west coast but having lived in Manhattan I know how expensive things are there. Let me make a suggestion. Contact Yale Univ School of Medicine in New Haven CT and see if they have such a specialist. Teaching hospitals oftentimes provide excellent care, real state-of the-art, at nominal cost. It'll mean a nice one hour train ride. It just might be an option. I know that University of CA at Irvine [Medical School] has one specialist in the neuro-muscular area. Recently a friend of mine came down with a devastating rheumatic disease, dermatomyocitis and tried to see the kind of specialist you are looking for. Because of her insurance she wasn't able to BUT at my prompting she booked an appointment with the rheumatologist at UCI that works down the hall from the neuro-muscular guy see wanted to see......seems the rheumatologist there was able to bounce her case off the neuro-musc doc and so my friend got the indirect benefit of his knowledge without having to shell out a fortune. So why not contact Yale? MD's in teaching hospitals seem to be addicted to sharing info with one another.
Good luck and let us know what's happening.
BTW - I have excellent insurance - I can go to just about anyone, so naturally I choose the best. However, more and more I am finding that doctors are starting to NOT take insurance. Cash only. We can thank the profiting insurance companies for that. The MD's have really had it with insurance companies telling them how to run their practices and creatng a paperwork nightmare for them.