I saw a new rheumy [the previous one retired] a few days ago and I believe he's just fobbed me off. I told him about the pain and how it's spreading, whereas it started in the hands and wrists, it is now in the shoulders, knees and feet. I'm on 25mg methotrexate and 500x6 sulfasalazine, which as far as I can tell are not working. The old rheumy was brilliant even if I was wasn't showing masses of inflammation he would listen to me and take on board that I am in a great deal of pain. Now this new Dr has decided I might have fibro, this has never been mentioned once in the 9 months since my diagnosis. I now feel i'm in limbo, I have an appointment with the rheumy nurse in 4 months, so another 4 months of living in this hell. I've avoided pain killers so far because I wanted to get the Ra under control first but now I wish I had some. Sorry for the rant. I hope every one is having the best day possible
New Rheumatologist. : I saw a new rheumy [the previous... - NRAS
New Rheumatologist.
Sorry you are feeling so frustrated.this disease can make you so. It took me over a year to get to a settled state.im 10 years on.Take the painkillers is my personal advice. When we are on so many tablets after a lifetime of taking few it can seem wrong to take more. Remember also painkillers work better if taken before the pain is at its worst.sleep loss also makes pain worse. It took me some time to get the right pillows and foam topped mattress and light duvet to improve sleep.Some friends found it funny that I wanted to try different beds to see which type felt comfy!!! It led to some different conversations. Keep persisting,smiling and joking.
I understand your frustration Melanie52. I had 3 great Consultants abroad who took listening to patients very seriously as a good guide as to how they were coping & whether a patient was controlled & didn't rely on bloods & imaging to decide their med plans. It does sound as though your new Rheumy doesn't agree with your previous Rheumy's diagnosis & I find it concerning that patients are increasingly given the fibromyalgia diagnosis. Did he refer to your original test results, x rays etc? Did he prescribe anything for his new diagnosis? Why did he not question that you're on high doses of both meds yet still have pain? Did he perform the DAS 28? Sorry for the questions but it does appear odd that because you now you have issues with your shoulders, knees & feet he's diagnosed fibro. If he examined you properly then why did he not suggest further imaging to rule out it's not the RD progressing or even OA?
What I would do is make an appointment with your GP, preferably the one you first saw & discussed your symptoms to, the one who ordered the bloods & referred you to Rheumatology. See what his thoughts are about the new Rheumy's diagnosis & if he can prescribe some pain relief &/or NSAID until you see your Rheumy nurse. Please don't be in pain for the sake of taking another tablet. If you're losing sleep because you're so uncomfortable in bed it makes it so much harder to deal with pain.
I do hope you receive some help & let us know how you're getting on.
I'm having problems with my feet but was told that feet aren't included in the DAS28 scoring which seems crazy to me!
The new rheumy glanced at my file, had a quick squeeze of my knees and wrists and declared ' It might be fibro' No mention of any tests, no new meds, nothing . I've made an appointment with my GP, in the hope I'll get an answer. Don't know why feet are'nt included in the DAS28 scoring because the previous rheumy and nurse would always ask about feet along with other joints.