Is my experience of ongoing pain and fatigue, even though I don't much have swelling and my bloods look normal, common?

[thenortherngal]

I have rheumatoid arthritis which was diagnosed in december of last year. I have always been CRB negative and my bloods now show that my inflammation levels are within normal range. I have been on methotrexate since december and I am significantly better - I used to struggle to move around and my joints were hot and swollen - but I am still not back to how I was pre diagnosis. When I told my consultant I was still experiencing pain (usually dull aches in fingers, toes, ankles and wrists which can vary between a small niggle and a throbbing pain which only strong painkillers reduce) and fatigue (again very variable - sometimes I can manage my full time job and hobbies without difficulty, this morning it took me 2 hours to get out of bed and get to work and I still had to stop for a nap in the car on the way because I thought I was going to crash), he said that I shouldn't be and he couldn't understand it.

Since then I have been reluctant to raise it with him because I was left concerned that I was imagining it or being a hypochondriac. I did mention the fatigue to the SPR today and he was relatively supportive but again he told me I looked like I was in remission and he didn't need to see me for 4 months.

Is this normal? Should I just learn to live with it? I can, as using painkillers and reducing my activity can manage these things, but should I be saying something in case my disease isn't as well treated as the consultants say. Could I be depressed and it be psychosomatic? I had a period of depression for the first time in my life just before I was diagnosed but I am on antidepressants and was feeling really good in mood. I don't think I'm depressed as I'm pretty optimistic about the future and am still managing my life in full with the help of my wonderful husband but maybe I'm embarrassed to admit it to myself.

I would really appreciate feedback from anyone else 's experience and advice on what to do based on this as I am not sure whether I should just "put up and shut up" or push the issue - I'm not very good at making a fuss with doctors as I grew up in a family where you don't 'do' illness!

Thanks!

[Hidden]

it is a mystery,, my consultant likens some pain to like that of an amputee?? body remembers the pain??, but im not so sure myself,. I Find the fatigue a bigger problem than the pain at moment.. but had a bad night last night my back and legs were killing... some one at work today said were is your pain?? so I Said most places.. but hands, feet and back at moment.. oh she said I WAS LOOKING IT up!!, mmm she said what type is yours inflammatory I said and showing some positive test for lupus called ana too.. not sure any more.. oh she said think the type I SAW was osteo arthritis.. nice she showed an interest though!.

[Hidden]

I wonder the same thing as you do quite often re remission and pain etc but I think I'm the other way around -I have had times of very little pain but my inflammatory markers have always been regarded as a bit too raised to class as remission.

Sometimes I get fleeting but very intense pains - yesterday in my knuckles for about five minutes and this morning in my feet when I first got up so I could barely walk down the stairs - but then it just ups and leaves so I convince myself it's all psychosomatic i.e I think I imagine pain sometimes where there is none. And if it's fleeting for me then I think everyone gets these kind of pains sometimes including non RAers - but it's not the same as RA where the pain hangs around and you see swelling etc. But maybe it is actually? I feel quite lucky that the inflammation levels show up in my blood markers usually but for some people it doesn't . This doesn't mean it isn't RA or that the pain is in your mind - but just that it doesn't show up in the same way and is harder to treat and harder for medical people to work out.

I just don't know enough about the psychology of chronic pain to answer your question I'm afraid. Off the top of my head I think the fatigue can go with low level pain - as can depression. I think this is because inflammation exhausts us and depresses us - even sometimes when there is no real pain with the inflammation. This is why people say that RA can be like flu - just generalised and make you feel lousy because it's a systemic disease after all. Sorry not very helpful but it's all I can say from my experience. Tilda x

[Ronnie63]

Hi Northern gal

Your experience is very similar to mine. The methotrexate can make you fatigued and low as can the disease itself even if relatively under control. Are you sleeping well? My sleep has been more disturbed and my rheummy has just prescribed Amityrptiline to help me sleep better and relax my nerve ending and muscles to deal with the periodic lower level pain which in turn will make me less fatigued. He has said NSAIDs will not deal with all the pain. Like you I couldn't understand why I was feeling like this when ESR, swelling etc fine.

I now think this is normal and I'm okay with that. I don't believe pain equal damage and has been sufficiently reassured.

Hope this helps

Ronnie

Xx

[pinkdee]

hiya thenortherngal. i was diagnosed approx 3 yrs back with seronegative ra. ive been on a cocktail of different meds, the latest addition being mtx. after being on it 8 months i said to my consultant that i was still getting a lot of pain and stiffness and the bad bouts of fatigue were still there ( i no just how you feel having to stop no matter what you are doing as you just know that if you dont you will nod off WHEREVER you are) he was surprised and couldnt understand it , saying he would add an extra 2.5mg of mtx to my dose and that should def do the trick. 3 months on im just the same. im starting to feel like the docs dont really believe me as for the fatigue they always seem to just brush that off and say oh thats just something you learn to live with !!!! i think the fatigue gets me down more than anything as i feel im missing out on my life.

[Hidden]

The fatigue especially that you describe sounds horrible, even if it is intermittent. Maybe I'm just a cynic bit I think consultants with heavy workloads sometimes succumb to the temptation to sideline patients who aren't too bad ... and the only way to get their attention is to speak up. I doubt that your consultant will think you a hypochondriac - RA is a nasty and very variable disease and remission after just 6 months of treatment sounds a bit optimistic.

I hope you are in remission but if you are suffering keep pushing for your consultant to give your symptoms a bit more thought. If you get further episodes of such dreadful exhaustion why not phone the Rheumy nurse if you have one? They will sometimes try to bring appointments forward.

I think you should trust yourself on this one. And anyway, I thought rheumys were meant to treat the person, not the blood test results.

Luce xx

[helixhelix]

I'm lucky enough to have a rheumy that does exactly what Luce says - she treats me, not my blood results or swelling. I was put on MTX when I was first diagnosed, and my body took one sniff at it and ESR dropped back to normal and most of swollen joints calmed down (with a bit of help in removing fluid etc) But I was still pretty dependent on painkillers and felt awful, and completely shattered nearly all the time. To cut long story short, it wasn't until Hydroxy and Sulpha were added in to the drug cocktail that I really started to regain some energy and could drop taking painkillers constantly. That was 3 years ago. I'm not the person I was before diagnosis, and I do get tired very easily and need to sleep loads more than I used to, but life is ok. In terms of pain I do get bad spells from time to time, but generally also ok (except for the damaged joints). But I think it would have been very easy for my rheumy to leave me just on MTX, and she probably would have if I hadn't kept asking if she could help get things better than they were. So my view is that you should keep asking....Polly

[thenortherngal]

Thanks everyone, I've found that really reassuring. I think I'll keep a diary of my symptoms before going back next time so I can focus myself a bit. Your feedback was really appreciated xx

[Hidden in reply to thenortherngal]

Hey don't wait 4 months though (if that's when your next appointment is). It took me a while to realise that my rheumy dept. do not think me cheeky, neurotic or hypochondriac when I phone for advice in between appointments - they seem to respect me for taking control. I think it's because of the way RA is - difficult to cope with & unpredictable - that many Rheumy depts. are much more flexible & accommodating than, say, the average GP surgery. Do you have a helpline number for rheumy nurse? If your consultant is being a bit unhelpful the nurse might be better. Plus rheumys change ..... we need to work on 'em! x

[sparker]

Hi I suffer like you and it's not just about your blood results mine are ok (sero positive) and I still suffer fro pain, stiffness and major fatigue and my consultant has confirmed that he agrees that my RA is still active. While I agree RA makes you depressed (i suffered) I think that some medical professionals find it easy to blame everything on that. I have learned that I know my body best and so now don't doubt my symptoms and won't be persuaded its in my head unless its a headache! Good luck and I have things improve. Steph x

[Hidden]

I'm dealing with the same issues as you. I have good and bad days. Boy do I cherish the good ones when I feel normal for a day. Then I do too much and feel bad the next day. My blood work looks good. I'm on Methotrexate. I was in a study when I was first diagnosed. I was on Humira and Meth. That put me in remission. But not like before the diagnosis. I feel depressed at times because I want to work ( I retired early) and be more active. I miss my old life. Although the positive is I have time to be with my grandson! I'm working on accepting the ups and downs. All the best, Carol from NH

[fastball]

I understand fully what you are saying i have PsA and have just seen my Rhuemy and was told that i had fibromyloga as well , and offered me Hydroxychloroquine also as mtx he said my PsA is under controll and that the pains i'm now getting is in muscles and bone and that these tablets would help. Hope i've helped a bit .

Chris

[tessintrouble]

If you check out my very recent blog about "surprising result from rheumatologist" You will see how similar our stories are. My Rheumy said that my bloods were much better after starting sulphasalazine and mtx injections. But he recognised that something was wrong and has put me on anti depressants and a small dose of Amityrptiline at night for pain relief and to help me sleep. Please visit your GP and see what they say. I wish you well.

ps I would also add that I don't think I have accepted I have this chronic disease and I keep waiting to "get better" rather than just getting it under control x

[Hidden]

Just a quickie reply - my rheumy told me that the first signs to go were the swelling & the heat, then the pain lessens but the fatigue can take months to improve - that gave me some hope. I'm also sero-negative & have been on MTX for 6 weeks now & still little improvement. If anything I hurt more now than when I started so I'm hoping it's just the body getting used to it all!

It's not a fun condition is it?!