Still in pain

[Lomo1964]

Hi everyone I am still in pain after being on my current medication for almost 12 months. Having another steroid injection on Thursday. When I tell my consultant I am still in lots of pain he just says my inflammation is down and we have to give the medication time to work and doesn't explain anything to me. I have only been on these medicines I haven't tried any others. I also think is it best to stick to the ones I am on with some pain or try something else and get really bad side affects. I am feeling confused and worried. I hope everyone else is feeling as best as the can x

[oldtimer]

If you being offered another steroid injection, it is an acknowledgement by the consultant that he does accept that you still have pain. He obviously thinks that you will continue to improve now the inflammatory markers are reduced. But if you continue to have problems (and many of us do, despite our inflammatory markers being normal) you need to keep a record, take it with you and ask what other help you can have. It is really difficult accepting that we are not going to be "back to what we were before" and learning ways to manage the situation we find ourselves in.

[Hidden]

Hi Lomo, I think if you have been on your current medication for almost 12 months you have given it a fair try and it's time your rheumy listened to you and tried something new. I got sick to death of being told my inflammatory markers were fine while I was in dreadful pain. I knew the drugs weren't working but nobody would listen. In the end I did what Oldtimer has suggested and wrote everything down. Also write down the questions you want answering. I found while I was passive in my treatment I got nowhere but once I started being more honest and vocal I got the treatment I needed. Best of luck x

[Matilda_1922]

Hi I'm in a similar position as you. Diagnosed January 2016 started MXT. May started hydroxychloroquin. Increased pain following a viral infection since November and after review in December increase to SSZ. Pain +++ mid to end of January. Had a steroid injection end of January and to let SSZ work. I have since had another virus started a week after steroid injection and still have now. I continued to have MXT am now wondering if I should have missed it.

I'm sill very tired all day and stiffness on waking which lasts a couple of hours.

I was given an early inflammatory pathway when diagnosed but due to NHS restraints this went out of the window so wasn't followed up as planned. I haven't seen consultant since diagnosis in January 2016 which im told I should have seen them.

Hope you start to feel better soon

Matilda x

[Lomo1964 in reply to Matilda_1922]

Oh no that's terrible you haven't seen someone for 12 months are you getting regular blood tests? I would speak to your gp get them to contact them. I know the tiredness is horrible I have pain in my shoulders and tops of arms find it difficult to dress myself at the moment. I hope you get things sorted 🙂

[Matilda_1922 in reply to Lomo1964]

I have seen a specialist nurse on 3 occasions but I didn't feel that confident with them as I felt I was not being listened to. I've also due to a he fatigue reduced my working hours

[JDQuinn75]

It sounds to me like your doctor doesn't want to listen to you. If you've been on your current meds for a year it should have started help you along time ago.im going through the same thing with my doctor. He keeps puting on meds that don't work for me . I'm so fed up with mine as well. I hurt from my shoulders doesn't to my feet including the hands and back as well. My doctor wants me to take my current medication for a month to see if it helps buy if it doesn't then wants me to try physical therapy. We both need to fire our doctor's I think and be our own doctor's because obviously our doctor's aren't taking us seriously enough.