A question (and a rant) from a newbie

Hi everyone I was diagnosed with RA last August, given a steroid injection and put on methotrexate and hydroxychloroquine. The treatment I had at my local hospital was excellent, seeing the consultant, rheum nurse, physio and occ health etc but I actually thought from all the info I was given that when the meds started to kick in the pain would go and I would be pain free and able to get a night's sleep and be able to start to live again. Am having a particularly bad time at the minute so contacted my rheum nurse. Apparently my inflammatory markers are ok but I have as much pain, if not more, than when I was first diagnosed. I don't understand why as I thought that the pain was caused by inflammation so if there's no internal inflammation why is there pain? Am told there's no benefit in increasing or adjusting my meds but they'll refer me back to the physio and occ health. Honestly can't see the point as I have compression gloves and splints and sheets of exercises. Am fed up taking painkillers that don't appear to work and not keen on going to the Gp for very strong painkillers that knock you out as I need to be able to work. Please can someone tell me what makes the pain go away as my hands, fingers, wrists and feet are so painful. Thanks to everyone who answered my question about travel insurance before. Like others, I'm new to this. You're all so helpful and it's good to know that you can ask anything and get straight answers!

33 Replies

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  • I am trying to think what else you can do without adding to the tablets you take.

    Some of the things that have worked for me are cold compresses or hot water bottles.

    The Physios used to make me put my hands in a bowl of cold water containing ice cubes. It was awful, but the pain was reduced. Other patients had their hands dipped in hot wax, which many on this forum have had.

    Nowadays I tend to use a bag of frozen peas.

    For my feet, the only thing that helps is putting my feet up, which is not always possible at work.

    I have heard of TENS machines being helpful. I expect more helpful advice will appear here soon.

    All the best!

  • Thanks so much for your reply. Think I'm at the stage where I'll try anything.

  • I recommend the paraffin wax baths - you can by them from Argos or online. You could ask if there is a pain clinic in your area because they can be be very good I've heard.

    Sometimes the bloods do not match the pain levels at all. I've had the opposite scenario where inflammatory markers were high but pain levels pretty low and very little visible inflammation ever. There are many kinds of RA and also of arthritis in which swelling appears minimal but pain can be just as awful. Fibromyalgia is one such I believe. I don't have this and have been very lucky with the same drugs as you, but it did take a switch to injectable MTX to make the difference to my inflammatory markers.

    I am having a drug holiday just now because for me the side effects of the meds are more unpleasant than the disease for me and I struggle to believe that I have RA. I hope I don't live to regret it because I do realise how lucky I am to have had success with the meds when I read posts like yours. Sometimes I think this disease messes with our whole concept of pain and for some there is neuralgia or pain that continues long after the active disease is gone. But then some people do have active RA without it showing in their blood markers too so keep pushing. I hope you do feel better soon. Tilda x

  • Thanks for your reply and good wishes. My prob has been that my esr and crp have never been particularly high but my rf and anti-ccp were. All I know is I'm in alot of pain and feel as if I'm walking on golf balls. Unlike you I'm lucky that I have no real issues with the meds apart from bad taste in mouth, no appetite and occasional light-headedness. Just feel that I moan all the time as the pain has never gone away and I stupidly thought that it would have by now. Despite all this I'm lucky I'm not incapacitated and can do most things it's just that everything's painful and I might be a bit slow. And the other thing I find is I have no brain cells and find it difficult to retain any info. It's in one ear and out the other and I feel so useless. Had just started a new job when I was diagnosed which was hard but I know I'm not alone. Thanks for listening Tilda and I hope you manage on your drug hol x

  • Hi

    I don't understand it either I have loads of pain at the moment but bloods show lower inflamation than usual,I think it is the nature of the beast RA . I was reluctant to try pain killers from the docs but had to give in. I take tramadol it does not take all the pain away but I have found it the best so far. Also it makes you feel relaxed without being drowsy(me any way).Also keeping warm seems to help. I hope you feel a bit better soon it is just the pits this disease but chatting on here really does help. Stay positive.

    Love Lorraine xx

  • Hi Lorraine Thanks for your reply. It seems we're in the same boat. I was told to visit my Gp so I shall do it next week and at least have a chat. I have found that I'm worse in the cold weather or if I'm cold. It is helping being able to chat with people and share experiences even if it doesn't make the pain go away. Maybe Tramadol is the way to go for a relaxed feeling! Will see what next week brings. Linda

  • Inflammatory blood markers aren't always absolutely accurate ways of showing disease, as Tilda says. If you have any particularly bad joints, you might want to ask if they could do an ultrasound to check for residual inflammation. A GP could actually order that.

  • Hi thanks for replying. If they aren't always an accurate reflection why do consultants not think outside the box sometimes? My hands and feet have always been my prob and after my last consultant appt I had an ultrasound of my hands so I know I don't have active synovitis but I do have pain! I suppose I'll have to explore various things and hope that I stumble upon something that works for me and stops the pain that is disrupting my life. Thanks for listening and taking the time to reply with advice. Linda

  • It depends on the consultant. Mine says he treats the person not their blood but then I'm not sure what he would have done if my inflammatory markers hadn't been consistently high because even when the pain was at it's height I didn't really show visible swelling. I think it's a good idea to see your GP about the pain you're in and as well as drugs ask them to refer you to a pain clinic and also ask about Fibromyalgia perhaps? Tilda

  • Like you I've not had much swelling of joints so I agree that they should look at everything and not just the blood results but it's not helpful to be told that some people just have chronic pain with ra. It's as if you're one of the unlucky ones but you have to just get on with it. Perhaps the people who say that don't have any experience of the condition! Think this week'll be a gp appt to discuss alternative pain relief, fibromyalgia and podiatry! Thanks Tilda. Linda

  • mmm wish he'd decide to treat me and not wait for my blood to show anything!

  • Yes its a bit of a convenient truth with him eh? My suspicion is that if I hadn't had a consistently high ESR for all that time he wouldn't have been so fussed to keep my MTX high and introduce Hydroxy. But when I worry about ESR not coming down it's dismissed as "patient feeling anxious" and signs and symptoms are the thing to go by for me - leave the clues to him the consultant big wig!

  • My inflammatory markers dropped like a stone once I started on the drugs, and have never budged above normal ever since no matter how rubbish I feel. So they really aren't a perfect measure. Luckily my rheumy tends to look closely at my joints to see whether tender/swollen and not just look at a sheet of paper. But if there's no sign of synovitis on ultrasound then that's a good sign, as suggests that at least not getting damaged joints. have you asked whether they think you maybe also have fibromyalgia? Quite a few people seem to get that and RA, unfortunately for them! And have you also been referred to a podiatrist as well as physio and OT? My feet are my worst bit, but after a year or two of complaining about them I finally got custom made inserts plus advice on calf exercises which have both really helped. I can now walk for an hour or so without bad pain. Polly

  • Hi Polly thanks for taking the time to send me an answer. I think I'll go to see my gp this week and discuss a few things. Listening to everyone's comments perhaps I'll mention fibromyalgia and a podiatrist as the balls of my feet are very painful as well as the individual toes with pain basically all over and under! I can walk unaided but it's painful and sometimes I'm a bit slow. It just seems to me that everyone's different so they should look at the whole picture and not just at blood test results. All of your comments have helped me get it in perspective and make a decision about what to do next so thanks. Linda

  • I never had raised inflammatory markers, though like you I had high RF and anti-CCP. I have come to see this as a blessing because it's conclusive, both to me and to doctors, that they need to take notice of me and keep me in the system whatever happens. In rheumatology terms, six months isn't actually that long, especially if you have tried to keep on keeping on - it may be that you need to rest up and let the meds take effect. It's taken me a long time to understand the value of rest in treating this disease. I kept on insisting that I needed to keep going, and all I did was keep myself sicker for longer. Also we come from the antibiotic generation where we expect medicines to work within 48 hours, and if they don't we go back to the doctor for different ones. Rheumatoid drugs aren't like that, unfortunately.

    What painkillers are you on? You may be able to work with your GP to find a selection that work. I have the two strengths of cocodamol, so that I can take the big ones when I'm in so much pain that I don't give a damn, and the smaller ones when I feel the need to be compos mentis. Also some people have success with amitriptylline taken at night as a muscle relaxant, which helps quell pain and which may help you get better sleep. There are lots of painkillers that work in different ways, and if it doesn't come under control they may refer you to the pain clinic, who are the real experts in dealing with this stuff.

    Good luck with it all - it's a long haul, and such a lot to get your head round. If it's any comfort, I am now back riding horses, when at one stage I couldn't get off the sofa.

    Dotty xx

  • Hi Dotty Thanks for taking time to reply. I can so relate to what you are saying and it's good to know that there are others like me. Since being diagnosed I have not yet been pain free but did have a period of time when I was able to get a night's sleep. My only hiccup has been kidney function tests showed what my consultant termed 'possible early chronic kidney disease' so I had to stop naproxen and anything related. Was told to take paracetamol 4x daily and when they did nothing I was put on co-codamol which hasn't stopped the pain. I worry about them as they carry warnings about addiction. Can you take them for long periods? I know you don't know how much pain they are stopping but they don't stop the pain completely. I work part-time and sometimes spend half a day in bed as I feel totally drained and 'jetlagged.' I'm trying to push myself to go and walk again (which we used to do alot and I enjoy) but sometimes it's incredibly hard when you feel so tired and hurt so much. Maybe the summer sun will help give me a boost. I know there's no overnight fix. Perhaps I should not keep pushing myself but I had only just started a new job working in a small company when I was diagnosed and only get statutory sick pay. Also don't like letting people down. Your story gives me hope and I'm glad that you are back being able to do something that you enjoy. Linda x

  • If cocodamol hasn't stopped the pain, go back to the GP and see what else they can give you. I find heat really helpful, and if I'm struggling I have a bath as hot as possible. I also have an electric blanket on the bed which eases stiffness in my hips and feet, and helps me sleep better, though sometimes I wake up because I've got too hot! I tend to start my days with a hot bath too. I am desperate for some proper sunshine though, and to get some warmth in my bones. You may feel more like walking when outdoor exercise feels like less of an endurance test. I know what you mean about feeling jetlagged. I lost my job because I just couldn't keep on top of my work any more - no energy, and in the end no enthusiasm. I just wore out. But an extended period of rest has turned out to be just what I needed, and has helped me learn how to manage the damn disease better, and to what extent it simply isn't manageable - if it was going to just go away quietly, then a year without really working at all would have made that happen. But it hasn't, so I guess I'm stuck with it. ;-)

    For now I'm having fun playing ponies, though I will need to do something about employment soon, sadly. I'm hoping to get some pension from my last employment that will enable me to work just part time, so that I can avoid the cycle of ill-well-ill-well that will happen if I have to do too much.

    Dotty xx

  • hi i was also finally diagnosed last oct and take sulpha and hydrochloquin but so far nothing seems to have changed my hands fingers wrist knees and feet all hurt. i did do a long drive thursday so that made it worse. i am also trying to carry on! and havent reallly aceoted i have ra dont really ni what else to do i am having insoles made by podiatrists as feet bad and i love walking one day hope the meds start to work

  • Hi Thanks for your reply. I know what you mean about keeping going. Think I'm also in denial - perhaps that's why we try to push ourselves to live as we did before we were told that we have ra. I can tell people and talk about it but it's as if I'm talking about someone else. As everyone says it's hard for others who don't suffer to understand as often there's no visible sign of anything wrong. I also enjoy walking but haven't done much recently as the pain and tiredness have been too much. Hope to do more soon when the weather improves and the cold doesn't affect me. Suppose we just have to live in hope knowing there's no quick fix, that it's trial and error as everyone's different and we'll be painfree one day. Take care and good luck. Linda

  • hi linda i agree its not an easy thing to explain to others who dont have ut i can now ubderstand how my dad felt as he had it. hoping for some warmer weather soon to begin to increase my walking and start swimming again take care and hope things improve for u soon sue

  • I avoid long drives and have put a friend on my car insurance to help. meds review is always a good idea..fibromylagia can give pain as well as ra and the tow co -exist often xx

    a pain person also said body can remember pain also and some times "pain gates" remaIN open or "in terms of nerve signals" switched on even after pain has gone? find this theory hard to swallow x

  • Thanks for your reply. We changed our car to an automatic for me which is better but the other week I found it very painful to use the accelerator! It wasn't funny at the time as I was on my own and not sure how I was going to get home. Still new to it all, trying to learn, not wanting to admit it to myself and trying to keep going which is not always the right thing to do. Every day is different and I cope better some days than others, like other sufferers. You are a brill bunch of people on this site and really helpful. Linda

  • When my inflammatory markers have gone down and I still have a lot of pain, I find it helpful to increase the amount of exercise that I do. I know that sounds difficult because of the pain, but going in the swimming pool and, for me, dancing gently, improves the pain.

    Also taking enough pain relief and using relaxation techniques so that I'm not tensing the muscles to try to prevent the joints hurting - if I tense the muscles they hurt and pull the joint surfaces together so that increases the pain.

    I use a TENS machine together with progressive muscle relaxation, especially in the mornings to get going.

  • Thanks for your reply. Yesterday I actually forced myself to go for a walk in the sun and then pottered about in the garden for a short time. None of it was painfree but I felt a bit better for it - no doubt seeing the sun helped a bit after a snowy winter. I think I'll pay a visit to my gp to discuss pain relief and take it from there but thanks for your suggestions.

  • the sun is out today too x

  • HI there.

    I'm one of those whose blood test reults are always fairly benign but that still hasn't stopped me siffereing from joint damage.

    I've just changed rheumatologists and while my previous one relied almost exclusively on blood test reults my new one is going to use imaging (ultrasound, x-ray and MRI) to determine what is actually going on. Seems a more sensible approach to me, to look at the joints in question rather than my blood!

    xx

  • Hi thanks for your reply. All the replies just show how everyone's different. Did you ask to change your rheumatologist and, if so, why? Well meaning family members are suggesting that I get a second opinion but not sure what to think at the moment. I have ended up gong where my GP sent me. Think I was so shell-shocked with the diagnosis that I didn't question options and my choices. Hope you have a better experience with your new consultant. Linda x

  • Hi Onoodle

    It sounds as if you've had some very useful replies and suggestions from the folk on here and I hope you manage to get some relief from the pain soon.

    In terms of getting a second opinion, this would need to come from your GP so would be worth discussing with them and there is a bit more information about this on the NHS Choices website: nhs.uk/chq/Pages/910.aspx

    Kind regards

    Sarah Kate

    NRAS

  • Thanks for your reply Sarah Kate. I'm going to discuss pain management with my GP and see where that leads me. I'm trying hard to understand why I'm in so much pain when I'm told that the meds are working as my inflammatory markers are in the right range. My ESR and CRP have only been raised on about 2 occasions and were ok when I was first referred to hospital with little swelling or stiffness but my RF and anti-CCP were very raised. Nothing so far has taken away the pain and I've been told that some people just have to live with chronic pain which doesn't seem right to me. Linda

  • I hope your GP is able to make some suggestions. In some areas there are specific pain management clinics so this may be a possibility. Unfortunately it does seem the case that some people's blood test results really do not accurately reflect how they're feeling. Which is why it is important to use other methods such as physical examination of the joints, scans and x-rays to assess things. Let us know how you get on.

    Kind regards

    Sarah Kate

  • Following a visit to my GP I am now trying a combination of high dose co-codamol and amitriptyline at night. It all leaves me feeling light-headed and dizzy and unable to function very well so I'm not taking any of it regularly but experimenting, so to speak. I see my GP again tomorrow to update him and have an appointment with the rheum nurse at the beginning of May. Fortunately the pain has lessened from what it was and I am no longer feeling as desperate but I am still not pain-free. Still learning about how the disease affects me and trying to come to terms with it. Also wondered if you could let me know if there are any local groups nearby. I live in Derbyshire on the border with Cheshire. Not sure if that's enough info without being totally specific! Linda

  • So sorry, I only just saw your question. I changed rheumatologist on the advice of my surgeon. To achieve it I approached my GP who was happy to re-refer me. I'm very happy with my decision as I firmly believe you have to take charge of your own destiny with this disease. If you feel you need a second opinion then go for it, what harm can it do?

    Good luck.

  • Sorry *suffering*

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