Any tips to relieve pain while waiting for rheumatology appointment?
I've had pain for 3 years now since having my daughter. It started with stiffness and pain in feet and knees. Over the years it's progressed to my elbows, wrists, now hands and shoulders. The upper body pain so far has been the most debilitating. My blood tests are always fine and for a while I don't think my gp believed the level of pain I'm in, maybe still doesn't. I was referred to rheumatology about 6 weeks ago so just waiting. I'm finding I don't have the same strength and movement in my hands anymore (even driving hurts now) and the stiffness every morning or after sitting for a while is awful. I also suffer from migraines so if I have both at the same then I just want to close my eyes and not get up again. On top of that I have horrendous bowel troubles since having my gallbladder out a year ago - again no help with this so I just don't eat during the day because I'm in work. I'm beginning to think others think I'm making it up. I know the pain is real. I feel very helpless. I've been taking 30/500 cocodomol on/off for 3 years and naproxen, although the gp has now stopped naproxen because of chest pain but no reason apparent for the chest pain. I've put it down to stress or radiating pain from my shoulders. How can I help my pain myself and how can I get my gp to take me seriously? Any help would be greatly appreciated.
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Molly28
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Sorry can't be much help, but wanted to commiserate. Had awful bowel issues since my gall bladder was removed over 25 years ago. Was left with IBS which can make me housebound at it's worst. Joint pain and bowel eruptions are linked in my mind as both are always really bad at the same time. My rheumy said that he is not surprised about that as they know gut and RD are linked, they just don't know how. Can't really help with the pain as I just struggle myself but take heart as the rheumy will hopefully be good one and find the right treatment for you. x
Thanks for the reply and sorry you have so much rotten stuff to deal with too. I've still got at least another 10 week wait for an initial appointment so I'll just need to get on with it and hopefully the time will pass quickly and I'll get some answers.
It sounds like you're having a terrible time of it, I hope you get some answers and relief soon. I've found voltarol gel helpful for joints that are inflamed, you can get it over the counter and I use the stronger one. Also don't be afraid to push the GP to chase up your referral. Best of luck
Thanks for the advice. I've tried that before with my knees but not tried it on other areas so I'll give it a go. I phoned the referral office today and was told I've been on the list for 10 weeks and it's taking about 20 weeks just now. I've made an appointment with my gp for Thursday. Hopefully I can push it a little because I'm drained
That really is a crazy length of time when in so much pain. I'm going to see if the gp can help push the referral a bit. It's taking over daily life and activities now.
If by horrendous problems with your bowels you mean constipation…see below…
“The most common side effects of co-codamol are constipation and feeling sick (nausea) or sleepy. Taking too much co-codamol can be harmful. Do not be tempted to increase the dose or take a double dose if your pain is very bad.”
I can personally identify with this after surgery ….maybe you should ask your doctor to change to something that does not contain codeine?
Come clean with your doctors & tell them you’re constipated ….unless you explain symptoms…..they don’t know things aren’t right.
Unfortunately it's the opposite of constipation - far from ideal when I'm rushing around in work. I honestly thought that all the cocodomol I take would have sorted the diarrhea because I had bad constipation after being on cocodomol following surgery years ago but it hadn't made a difference. I've been so detailed with my gp and even sat with a list and went through it, albeit I've not had a face to face appointment. The list helped get enough attention for a referral but I found out today the referral is routine and takes 20 weeks. I feel absolutely desperate so I'll see if my gp will change it from routine to urgent but I doubt they will.
Oh you poor soul……I know consultant referrals are difficult atm but I would not think your GP would agree that a wait of 5 months is acceptable….you must be seriously dehydrated & open to pick up any old bug ..definitely get on to him for that urgent referral.Chronic diarrhoea with pain & general malaise should not just be left, & I wouldn’t have thought continuing with the cocodamol is ideal either.
I think it’s time to insist on referral is brought forward.
Have you had any stool tests ? If not …I’d absolutely ask for them now.
Hope you can get your GP motivated to get you that appointment asap.
A referral for a possible inflammatory arthritis is supposed to be „an emergency referral“ and seen in specialist clinic within 3 weeks…there are NHS guidelines for that - maybe worth digging them out and taking to your GP so that they can wave them at the rheumatology department….
Yes someone else has said this and I had no idea about it. Thanks for mentioning, so glad I made my post. I think because my blood tests are fine they don't seem to think it's a big issue. Only thing I haven't mentioned on my post is I always have low folate so I'm on folic acid now because my nails were starting to lift. The folic acid has really helped with that but that's the only issue I have from blood results. One gp said to me about 2 yrs ago that because my blood results are fine they won't investigate further. Sometimes it's just pot luck which gp happens to phone when I have an appointment.
Yes I thought running to the toilet like that every time I eat just isn't right. I'm exhausted. No not had any stool tests. The gp gave me an imodium type medication and some fibre sachets and said it's just the result of having my gallbladder out. None of what I was given has made a difference though. You'd think I'd lose a few pounds ha, but I actually haven't. I pick at stuff and eat dinner really late at night when I'm home and feel more safe to eat which isn't the healthiest routine to be in now but it gets me through the day.
I totally understand that helpless feeling when nobody is listening or taking you seriously. Nag, nag, nag your GP. Ask them if your referral was routine or urgent - pressure them to make it urgent and to chase it up. Tell them repeatedly about your pain and ask for support. Personally I would ask for steroids but they need to work with you to find what suits you. Good luck!
Turns out it's a routine referral so I've made an appointment with the gp for Thursday. I know it might not even be RA but it's got to be something and I'm desperate now. Can't take the pain anymore and trying to fake smile my way through the day at work.
Good luck! I really hope they listen to you xx don’t feel you have to smile and be ok - I’ve cried to the GP / nhs111 / A&E /RA nurses so many times…chronic pain is horrible. Let us know how you get on xxx
Co-codamol blocks you up, and naproxen rots your stomach, so I would stop both of those and look for alternatives. I would ask for Amitriptyline which really worked for me. I take at 7pm and sleep really well. It also helps with nerve pain and depression (bit of a ‘cure all’). From what you have said, you may have Fibromyalgia as well as RA. The Amitriptyline will help with that.
I AM NOT A MEDIC. Just going on myself. Good Luck with your investigations and treatment x
Yep. I only hurt now when I’ve done too much, rather than all the time. Ironically felt tons better after stopping naproxen & diclofenac. If I’m really bad I take a couple of paracetamol, but quite rare nowadays 🎉
vnsdaith.co.uk/ This is supposed to help with migraines. I am going later this month, as it is supposed to help with Fibromyalgia; may as well give it a go.
Oh I've had my left daith done. If I'm honest I actually think it helped a little plus it looks good too, but I had a migraine last week for the first time in a bit. I'm going to get my right side done next because I think both sides might help. Honestly, it doesn't hurt that much getting it done or afterwards and it does look good.
The main thing is to keep a daily record and nag your GP politely. I find saying 'yes, but...' is a polite way of disagreeing and making your point again. Find out to whom you have been referred. Ring appointments at the hospital , ask where you are on the waiting list and say that you are happy to take a cancellation at short notice.
Thank you so much for your advice. I've been told I've got about another 10 weeks to wait but I've got a gp telephone appointment on Thursday so hopefully they can help a little in the short term. This page has been great for advice and support from my post. Thanks again.
Morning molly, sorry to hear of your troubles.Firstly I only know to well about co-codamol as I ended up addicted to it exactly the same strength as you are on and for a lot of years originally started taking them for my back problems, they will contribute massively towards your migraines as I suffer with them luckily I managed to get off codeine so I would really try this with help from your gp as the side effects are not nice if you just do it on your own. Xx
Yes I think they are making the migraines worse and just daily headaches as a sort of rebound. I'm hoping the gp can make an alternative suggestion this week. Thanks so much for your advice, really appreciate it.
Hi Molly The only other medication you could take while waiting woud be an anti inflammatory like ibrufen the trouble with RA it is not just painful joints as people ofter assume it effects all the connective tissue and ligaments so you will have some lost of strength I am sure your GP could sort out an anti inflammatory for you while you are waiting
I feel your pain and hope you don't have to wait too long for your referral to come through Ice packs often help bring the swelling and heat down too worth trying
If the roblemwith your bowels is constipation try get some fybrogel and lactulouse from your G P also as paracetamol and coding will mess with your Bowes every time good luck
Thank you so much for your advice. I've got approximately another 10 weeks to wait. I think I'm also concerned that maybe they find nothing and I'm just stuck like this with no support. It's diarrhea that is a massive issue. It's crazy how bad it is especially with the amount of cocodomol I take. Hopefully I'll get some progress soon. Thanks again.
Hello,I can‘t advise re pain management but whilst I wasn’t referred immediately by the GP as they initially didn’t think it was anything I was referred much faster than you and when the referral was sent it was marked urgent as per the guidelines for suspected inflammatory arthritis. As per NICE guidelines the GP should send it as an urgent referral within 3 days of seeing the patient and you should be seen in an early inflammatory arthritis clinic within 3 weeks of the referral being received as long as you meet the criteria for suspected early inflammatory arthritis.
This is hopefully the link but will try and attach a pic, too.
This is so helpful, thank you so much. I've been going to the gp for almost 3 years with the same thing, mainly small joints, and only just recently been referred and it's been as a routine referral. They kept saying because my blood tests were fine that nothing pointed to the need for a referral. I'm hoping my gp appointment on Thursday will get me some more progress. Thanks again, this is very helpful. I've been searching online but just don't know if it even is RA but it must be something and I certainly have the issues consistent with something arthritis like.
I think the guidelines say that normal bloods are not supposed to stop an urgent referral. I think they even say that the GP doesn’t need to do bloods or wait for the results to refer urgently.I initially got told my bloods were fine so not to worry but when I went back to the GP later I spoke to someone more switched on who did send an urgent referral.
If you know which rheumatology department your referral has gone to you could try contacting them?
I have wondered if maybe having a baby has triggered something because it all started right after having my daughter. When she was 8 months old I went back to the gp for the 3rd time with stiffness and pain and was told that going back to work and not spending so much time with my daughter and carrying her would probably help - not what I wanted to hear because it's difficult enough leaving your child after mat leave. Anyway, she's 3 now so I think we can rule out carrying my daughter as the cause. 🙄 I've not heard about inflammation markers before so I'll ask about that? Is that from blood tests? I've just been given cocodomol for 3 years and only recently the decision was made to refer me. I've just been told my blood tests are fine all the time so that's maybe why the gp thinks there's nothing wrong but the pain is there and spreading to other joints so who knows. Thanks so much for the advice, really appreciate it.
Thank you so much everyone for all your support and advice. What a great place to reach out for support. The offers of support, advice and just hearing other people's experiences has honestly made me feel a bit less useless and alone. I feel I just can't talk about it to family because they must be fed up of me saying I don't feel good, so I just keep fairly quiet about it now and get on with it. You've all helped so much.
I've updated my notes from last time I spoke to my gp and remembered to add in how things have progressed and an honest description of how I'm feeling on a daily basis. I've also added to my little notes to ask about the wait time for referral and if anything can be done to change this to urgent rather than routine. I've got the guidelines (shared earlier) up my sleeve as a polite pointer if my request isn't acknowledged. Hopefully I won't need to do that though.
Thank you so much once again and with that, I'll stop typing on my phone because it hurts my hands. 🤣
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
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