Rheumatoid arthritis pain?

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I am waiting on a rheumatology appointment (which has a 15 month waiting list) my bloods have shown signs of rh got results March 2016 since then I have been battling on and off pain. My doctor keeps giving me different advice - one is to pay private and speed the diagnosis up. That is a luxury I can't afford. I am currently taking robaxin and cocodomal which aren't taking the pain away. I try and mix them with ibuprofen but I have a stomach problem so have to be careful. On my last gp appointment he told me I needed to lose 3 stone which I agree with but it dosent take this pain away now. I work in a job helping the elderly which I am so worried about losing. I just want a diagnosis and effective treatment but I don't know what to do at this stage. Any advice ???

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  • Posted

    15 month waiting list? really? that can't be right. what is your doc doing? sorry if showing ignorance but aren't things in place stop that now? tell your doc do something NOW. you need help. it's cruel waiting that long.my heart goes out to you. i know I've been there. the wait is awful.

    my wait was 18 months. but that was Thatcher's era. enough said? keep your chin up Julie. easy said I know. all best. ivan

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    • Posted

      Thank you. I was shocked at the waiting time. My gp thinks it is easy to pay for a private appointment! I am seeing another doctor Thursday so hopefully get somewhere with her. If the painkillers helped I could wait but they are hardly touching the pain.
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  • Posted

    Are you in the uk Julie ?

    because if you are you must ask to be referred to another rheumatologist even if it means travelling.

    15 months wait is ridiculous. All the research shows that early diagnosis and treatment is vital to hold back the progress of the disease and as you ve discovered it s painful and you want to stay well enough to do your job. 

    you really shouldn't take cocodamol and ibrufen for 15 months either.

    you could ask your dr for another non steroid anti inflammatory.

    you could look into anti inflammatory diets as some people say this helps.

    But if you possibly can, even if you have to pay, try and get an initial appt with a rheumy to confirm diagnosis and begin treatment but keep your other appt on the books so you can transfer.

    Sorry to sound so bossy- but I m actually shocked you have a 15 month wait to see a rheumy. Hope you find a way through.

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    • Posted

      Thank you for your response. I am in Northern Ireland. I was so shocked at the waiting time. I have been in so much pain the last fortnight I nearly feel like going to a & e just to get somewhere with pain relief. I could have patience if the pain eased. I am due back to work tomorrow evening. I was off on holidays for 8 days. I am worried how I will manage. I have a good sickness package but I don't like taking sick leave.

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  • Posted

    Hi. Can't believe you've got to wait that long. Could you not choose which hospital you go to. When I got diagnosed last year I was given a choice of hospitals in my area. Each hospital stated their expected waiting time for Rheumatology appts available, and a list of appts which were available. Chase it up, see another GP if you have too!!!

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  • Posted

    Can't offer any advice on waiting times, etc, but perhaps you need to take this thing in hand yourself by trying some alternative treatments.   I'm personally not a beleiver in alternatives because they haven't worked for me but the mind is a powerful tool.   Explore things like diet, turmeric, MSM, meditation and so on.    It can't hurt!

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  • Posted

    Hi Julie

    So sorry to hear you are in so much pain, I know what that is like.  Does the hospital have a Rhummy nurse, try and get in touch with him/her I find mine very useful and they can sometime speed up the appointment.  As suggested I would ask your doctor for a different pain killer.

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    • Posted

      Any advice on which painkiller is best? My back right ankle and top of my arm is just burning in pain. Only have slight swelling on ankle. I am stiff when trying to bend. It just seems to be taking over my body very quickly
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    • Posted

      Normal painkillers don't really touch RA pain. I was taking paracetamol every 4 hours day and night and ibrufen in between and was still in pain while waiting for my initial diagnosis- no obvious swelling or redness, but pain, stiffness in the morning and fatigue. But my appt came through in 4 weeks.

      when you see new gp on Thursday have everything written down- don't play down the pain. Mention you are having to take sick leave. Mention it s getting worse quickly.

      The standard treatment after diagnosis is to prescribe a disease modifying drug and a corticosteroid shot to calm down inflammation while waiting for the drug to work, which usually relieves pain. The dr may be able to prescribe a non steroid anti inflammatory, stronger than ibrufen- but ask the question how long it's ok for you to be on that.

      If your need is urgent they should be able to write a more urgent referral letter-  

      in the short term- I found heat helped painful joints, but some people find cold helps including those pain relieving ' freeze' gels in a tube.

      all the best for Thursday

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  • Posted

    I was just going to say exactly the same as Rowbirdie and then I read further - you are in NI. Answers it all I'm afraid. I've come across problems getting to rheumies there before.

    However - if your doctor tries phoning and saying "Emergency" (that means NOW) rather than "urgent" (it just means a bit sooner than routine) - and definitely not "routine"  - on the letter you MIGHT get an earlier appointment. The evidence is that early treatment makes a massive difference in RA and waiting like that is plain stupid.The painkillers won't stop the progression of the disease if it is RA - they just increase the risks of gastric and cardiac problems long term.

    Unfortunately - the doctors there are can only work the hours they can and there simply aren't enough of them. Brexit will only make it worse - as they stop coming from the rest of the EU and outside as immigration is to be slowed (some hopes but there we are). And the achieving of an annual income of £35K for migrants to be allowed to remain here will make sure the NHS in general and elderly care in particular will collapse completely - £35K is a dream anywhere outside London for nurses, never mind cleaners and care assistants.

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    • Posted

      It is just so annoying when you know you are in pain. I so want to be fit to work - I actually enjoy my work. My hubby was off for holidays and I am sure he is fed up listening to me complaining all week. We did go a few places with the kids but I suffered big time for it.
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    • Posted

      It is - I know just what you mean. Do have a go at your GP and see if they will try to hurry it up. if they can get you on to the waiting list you can then call the hospital and ask if you can be considered for a cancellation appointment at short notice - but that does mean you have to drop everything and go if you are offered one. The trouble is that most clinics only see a limited number of new patients each time because it is a long appointment usually. if you have even 3 new patients per clinic (and that is a lot) if you have a lot of new referrals it takes ages to get through the list. If it is a Monday clinic - every bank holiday there won't be one. Doctors have to go on holiday - even consultants - and if they are short of specialists that can mean no new patients seen on those days. It all adds up.

      I know you said private is too expensive - even as a birthday/Christmas present from a few people clubbing together? Often if you see someone privately once and they feel you need specialist care they will add you to your local NHS list. It shouldn't have to happen - but being realistic - might that nt be better than being in pain for another year and a bit?

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  • Posted

    Hi Julie

    I am also waiting to see the rheumatoid consultant my appointment is not till September and I thought that was a long waiting time but it seems nothing compared to yours.

    My go has given me naproxen and zapain which do take the edge off the pain but they make me very sleepy so I am not able to drive or do anything else come to think of it

    I am also struggling with work as I have a Manuel job I'm a cleaner and I'm finding it very difficult what with all the bending and using my arms is so very painful

    It really is a nasty disease and very strength sapping

    My heart goes out to you I hope you get to see someone soon

    Take care xx

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