I am a newbie and was diagnosed with Fibro three weeks ago when I went to see a Rheumatologist for the first time. My GP thought I had Rheumatoid Arthritus (I tested positive, had a high SED levl and positive for Epstein/Barr) and I had been on crutches for the last two months since my shins and knees were so painful I couldn't walk otherwise. However, the pain in my feet, hands, ...really the pain all over my body caused them to send me to a Rheumy for futher evaluation. Anyway, I'm still waiting on the rest of the tests to get back but passed the pressure point test with flying colors (lucky me) and he said with no nodules on my elbows it was osteoarthritus and fibromyalgia. I had controlled the pain somewhat over the last year with tramadol and advil but have had two bleeds, the last requiring 5 units of blood so they have me on vicodine, tylonal arthritus, trazadome, zoloft and it's not really working. I have been in pain for over a year now and am getting steadily worse. At this point I see no really great future for me. I haven't been able to work since last October and if something doesn't improve soon, see a wheelchair as my next step to keeping mobile.
This is the pits. I'm beginning to feel like such a burden on my husband and he's beginning to feel bad about leaving me alone during the day as I have fallen twice lately and have such a hard time getting up. Plus the mental fog is horrible to cope with. I feel like my IQ has dropped 20 points in the last year.
People talk about flare ups. Have any of you had a year long flare up? Is anyone else on crutches or in a wheelchair? When does this get better?
I was on a walker for a while until the rhematologist got me up and running again. We've discussed trigger point injections and many other things and I have a feeling that if you discuss your options with your rheumatologist he/she maybe can come up with a different treatment plan for you.
I always believe that when feeling the way you do that there's got to be something better out there to help----even if it's a new doctor.
Why not give it another try and see what the doc can do for you.
When I got my new one I made an appointment every three weeks until he got the idea that I wasn't leaving until he got me up and around better.
When we first me we locked horns and I got up to walk out of his office. He didn't let me get too far and then he began to really help.
If I felt exactly like you i'd complain. And as for flare-ups, I'm either recuperating from one, ending one, beginning one with brief periods in between where I feel a little better. I feel like I'm on a merry-go-round, but I believe it's just the nature of the disease. I'm much better off now than I was. After the walker I had a cane and from the cane, now I can actually walk---though not too much.
I hope that this doctor can help you out. It took me several dr before I found one that would even diagnose my fibro. They all kept telling me it was rheumatory arthritis (my father has severe ra), lupus, lymes, ms, and I had one doctor tell me he thought it was just all in my head. What a nut he was! I haven't made it to crutches or anything yet but I wonder some times how much longer it will be. Instead of getting better, I feel as though I'm getting worse. Some days, I can hardly walk from my bed to the kitchen or bathroom. I can't even walk through the grocery store or Wal-mart now without my husband pushing me in a wheelchair or using an electric chair. (He usually pushes, I'm not very got at driving one of those electric chairs.) I was doing fairly good until about 2 months ago when I had to go to the dr for terrible pains in my legs that would just not let up no matter how much pain med or bed rest I got. When they added neurontin to my list (a long list) of meds, it seems like the pain is getting worse. As for flare-ups, it seems like I go from one flare-up right into the next. If I'm lucky, I might get a good day in between.
So sorry to hear about the crutches and everything else your'e going through. So far I've been lucky and haven't needed that. With my neck/shoulder/upper back problems I can't imagine I would be able to.
The others are right about being persistent with doctors and changing if necessary. I have been out of work for two years but I've had fibro for 15 years. I lived a normal life before I couldn't work anymore with just a little more rest and pain thrown in then normal people.
I too have the in and out flare pattern. After the first year and once my doctor and I found the right meds, codeine, soma, occasional xanax (not just for anxiety but to relax my body) and promethazine sometimes I made a lot of improvement. I would have longer periods between flares and be more productive overall in day to day living. Not enough to go back to work but enough that I can do laundry and wash my own hair.
The more you can learn to pace yourself in tasks the more good days you will have. But it sound slike you are in a really acute stage plus have other conditions so it might take a whole year of rest and rehab to make you gain strength. By rehab I do not mean some therapist bending you and hurting you. I just mean moving your body at your own pace even if that means you stretch in bed.
If I don't force myself to do it even when it hurts I freeze up like the tin man.
Thanks so much for the kind words from everyone. I do use the "scooter" when I go to shop and that, at least, allows me to feel like I'm somewhat normal. I find that my GP is much more available than the Rheumy and at least she is working hard on finding the right pain meds to keep me going. I can't even begin to move without taking two Vicodine ES and two Tylonal Arthritis pills in the morning. I try to taper the dose throughout the rest of the day so that I don't do as much damage to my liver as possible. I'm hoping that the trazadome will help me sleep better. I guess the only thing to do is just rest and try to hope for the best.