Conflicting information

[Bev486]

About 8 weeks ago I increased my MTX from 6 tablets to 8 per week on advice from Rhumy. About 6 weeks ago I had four swollen and red joints in my hands, I got a steroid injection and had expected my fingers to return to normal after it. They have not returned to normal and seem to go up and down, one day my pinky knuckles feel like they are going to explode, the next they are less swollen. Either way they are larger than normal. I contacted the nurse to say that my hands had not returned to normal, she told me to wait a mth then contact them again, 5 weeks passed, I did not want to bother the nurse, then on Friday night my hip was sore, the pain travelled to the front of my groin and I had to be carried home, I did not sleep all night for pain, I took tramadol at 2.30 in the morning, I ended up being sick with pain killers. By the sat night the pain had moved to my lower back. Yesterday the pain was in my shoulders and neck. This morning I felt better but still sore at the bottom of my back. I called the nurse today, she said she would give me another steroid, when I got there she said my hands had improved. She checked my hands and said that I did not warrant another steroid injection. She said the pain in my back must be sciatica which I have never had before, she also said you can't get RA in your neck and shoulders it must be stress related? I thought you could get RA in your neck, I have done lots of reading about it. I called NRAS they confirmed you can get it in your neck. She gave me the steroid but I feel I have been a nuisance to her and that she doesn't believe that I had pain in my hip and neck. Now I have this pain in my back which I have been told must be sciatica, my physio said if it was this I would have pain traveling down the leg, I don't have paid travelling down my leg! There is so much conflicting information I don't know what to believe anymore. Dealing with the pain is bad enough without all this hassle.

[Beaches2]

Hi bev

So sorry to hear you are having such problems. I have had pain in my neck last few weeks too and it has panicked me a bit. I am only 7 months diagnosed so was pretty scared to think it was the ra causing it. Spoke to rheumy nurse yesterday about it. You can get ra in joints of neck, but she did say fairly rare. However, we decided mine was muscular pain caused by stress,tension and probably poor posture over the past few months due to pain. Also think there is some more general muscle wastage due to lack of exercise causing some aches and pains. My hips have been aching too, but again I feel more muscular pain.

I know how you feel when it seems like one thing after another, but I think most of it is related in some way, ie due to stress, lack of exercise etc, but it feels like we are falling apart doesn't it?

Sounds like your disease is still not under control and like myself you are still working through combinations of drugs that will eventually work. Have they suggested any other dmards for you to take alongside mtx?

I'm sure your nurse does believe you but I guess it's hard for them too when they just hope the drugs will work for us and we will feel better.

Hope the steroid kicks in and makes you feel a little better for a while x

[marcus6]

Hi Bev486,

sorry to hear you are having a hard time! I had the same from my RA nurse, she asked me where it hurts the most and i said my back and neck are very bad, and she said well that's not RA doing that!? from that point on i have lost a lot of trust in my RA team, still waiting for the X-ray/scan they said they would book me in to have for my back, to see whats going on.

Hope you feel better soon, take it easy and try and rest up! x

[net2012]

Trust me you can get it in your neck. I have had two episodes of it. Very first time was when I had just been diagnosed I woke up when morning and could not move took me 2 hours to get out of bed. When I eventually could get up I could not lift my head or arm I thought I had had a stroke. The 2nd time was only about 2 months ago when I woke with pain in my neck and could not move it, for a good week I could not move my neck to the left. Severe stiffness. All I can say is still report what pain ,stiffness you have. Everyone will tell you even professionals that RA differs in every patient. It does not follow a set pattern. It affects your tendons which in turn affects your muscles. Stay strong and do not feel you are being a nusiance Bev. I have the same thing with my fingers too, they go up and down it is synovitis. Jeanette x

[digger1]

I have had ra for many years and can assure you you can get it in the neck, and it is very painful and dibilitating. Like you my hands feet knees etc get very swollen. I used to have a great ra nurse who did support me the one I have now sounds pretty much like yours I now demand to see rhuemy when she says leave another couple days before jag. This gets me a jag, do they seriously think we enjoy injections?? I feel now after more than 10years with this disease I know when I need help. Hope you feeling better soon x

[nomoreheels]

Hiya Bev. I'll be tackling my Rheumy about RD & the neck next week unless she confirms it is indeed that causing the terrible continual headaches, stiffness & pain in that area for the last 5 months or so. If she insists it's not related I'm going to have to put my foot down with a heavy hand & ask for further investigations as I can't continue this way. I've been following this thread with interest as I truly believe it's related as it's only happened since only taking Arcoxia when I absolutely need it on the say so of the Registrar I saw last time so have been without a daily NSAID of any sort in this time & seems too much of a coincidence to me. I also have pain in my lower back, hips, shoulders & outer upper thighs & also down the top of my left arm which I've not had before so shall bring that to her attention too as it could all be related.

I hope you can convince your Rheumy nurse otherwise as it's no fun is it on top of other joint pain is it? Being told it can't be makes we wish they could feel it then maybe they wouldn't be so glib & possibly explore a little more instead of being dismissive of us.

Grumpy bonce done now!!!