I have finally had my follow up appointment, today.(6 months late!) I have been discharged from Rheumatology due to the fact I had no pain today. Even though my pain is better than it has been, it is still there, its not horrendous by I am aware of it when doing the simplest of things. I had no pain when she pushed on my joints or when she moved my hip outwards or my shoulders. However, now I am home, both my shoulders are hurting and i feel like crap. Is this all in my head? I cannot believe the pain that I experienced in my shoulder earlier in the year was in my head, when it hits it kills. I was told that if i I have any more problems then i need to go back to my GP and I guess start the process over again! I don't know what to do......
Elly
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ellybw
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Oh poor you Elly, did she say if wasn't RA then ? Maybe it's another form of arthritis as there are lots of different types that could still cause you pain .
I know it's so soul destroying to now go back and start along another track but I think you should push it along. Go back to the gp as you say and have a long discussion on if it's not rheumatology them where can you be seen now ? Some of my pain is osteoarthritis, other was neurological and then rheumatology so keep going, don't be too downhearted.
I am so sorry you don't have your answer yet but keep plugging until you get your answers . Also it happened to me a couple of years before my big flare set in so maybe , even though I don't wish it on you, it might rear it's ugly head again in a while and the gp can re refer you.
That's the problem isn't it sorta leaving you in the dark. It's an awful thing to wish on you that you can flare to show them the pain, did u have any photos or a pain diary with you? If not then start now gathering your evidence lol u r honour ! Take pictures of any swelling, write down where your pain is, how bad it is maybe using a 1 to 10 score? How long it takes you to get out of bed and how long you are stiff for each day, so when u see the gp you will have some physical proof to take as Sod's law with this illness as happened with you, you see a doctor and it settles down !
You are a very kind lady..just read your reply to Ellybw you are very sweet a good person. Maryx
That's awful Ellybw. Surely if they know you are in pain (even if it is less than before) if you have any kind of arthritis they should keep you on their books so to speak. I think it would be better if they said they'd see you in 6 months or so. The you would have something to cling to. Sending very gentle hugs. xx
It is just so annoying. More so because I lost my job in July due to constant foot pain. Ultrasound showed bursitis on my right but nothing has been done about it. I cannot be on my feet for more than an hour and a half before I loose all feeling in my toes. Now my left is joining in the fun! I guess it's back to the GP for me!
I think it's terrible that they kicked you off their books. Have you had any blood tests confirming of the type of Arthritis you may have? To me it sounds like it could be the same as mine, I have RA as well and was diagnosed around 3 years ago. My consultant told me I had a form of polyarthritis where by both sides of the body is effected. If they haven't given you a blood test, I suggest you ask or better still tell them you would like one done. You may also have Fybromyalgia, have you queried that as well? I wish you well and good luck. x
When i saw a different consultant in January, diagnosis was fibro and possible RA/ other inflammatory arthritis. I have had bloods done again today so will wait to see what they come back with but the last two times my Rheumatoid Factor was positive (just), and i noticed today that that one and my anti-ccp were highlighted in red on the computer.The pain at present is mainly on my right side, but I can slowly begin to feel my left side wanting to join the party!! I take amitriptyline 20mg at night and wouldn't be withoutit purely for the fact that it makes me sleep.I have noticed no difference in my shoudler pain, which they said was fibro. I am also on etodolac (NSAID) omeprazole and cocodamol, but don't want to be taking them long term, if they are not needed. Have calmed down a bit now but still not happy, and still have pain in shoulders and hips after they've been manipulated around today!
Definitely keep a record of where and when you have pain. I find a "body map" great - just downloaded an outline of a body from the internet and colour in areas that hurt. I do this before and after starting new treatments too. Put the date on the sheet when you do it, then you can see how the pattern of pain develops. If your blood tests aren't confirming RA, then it could be spondyloarthritis, which is a whole lot harder to diagnose, as that really is sero-negative and often doesn't even show raised inflammatory markers. If you get relief from NSAIDs or from steroids then it does point to it being inflammatory arthritis of some kind. If you haven't tried taking either of those, you could ask your GP about prescribing a trial. If you do need to get referred again, try asking GP to refer you to a spondyloarrhritis specialist instead of a general rheumatologist. General rheumies don't always understand spondy, but spondy specialists will be able to spot both spondyloarthritis and RA pretty well.
I think earthwitch and allanah have given great advice, I am zero negative and have little swelling but a lot of pain, my bloods can be fairly normal but my rheumy has said the RA is not under control. It has taken two years to get where I am and being taken seriously. I followed the advice on here and have kept a pain and symptom diary, it really helps when you have an appointment, it is so difficult to remember everything. You have to really push and be assertive, not easy I know. I am going onto the biologics fairly soon.
I hope you get some satisfaction soon and less pain.
I am sero negative inflammatory arthritis and FMS too and it has been a long hard road of sheer and utter frustration. I felt like giving up on a few occasions but I am glad I stuck with it as I too felt like I was going crazy and maybe it was all in my head, but it isn't it is in your body. Stick with it and you will get an answer in the end, the squeaky wheel gets the attention in the end
Hi Elly,I know just how you feel. I was under R.Cornwall for three years,after that they dismissed me because all the meds. they tried made me worse. Since then I've had no help of any kind. Go back to your GP don't let it lie. I wish you luck.x
Thanks for all your replies. Am feeling a bit better today, will give the GP a ring next week and make an appointment but think i'll wait until they get my blood results. Off to a friends wedding today so will forget it all and enjoy myself!!
I was told not to carry on attending as I could not take any medication cos of allergies. I have received little help since then except to get DLA at the highest rate for care and mobility and also Council Tax relief for an added shower room. I get really upset as I do have private health insurance. I have decided to go to the GP in March [holiday in Jan] and demand seeing someone. I can go where I like with private health care as Lincolnshire is awful. Anyone recommend an approachable person please. I live in Skegness so Yorkshire, Cambs, Norfolk etc areas please.
You could ask the NRAS Team about consultants in that area - the Norfolk and Norwich team seem to have a very good reputation. You could find out the Lead Rheumy Consultant's name and contact details by looking at the N & N's website.
Hello ellybw, I'm a bit late to this but I am shocked that you were discharged without having a formal diagnosis - as you say 'didn't say it was RA, but didn't say it was'. Did they ever do an MRI or ultrasound of the hands? I agree with everything that's been said - about keeping a symptom diary, yes, definitely go back to the GP, and insist on more tests if possible to get a diagnosis. Good luck.
I made this mistake. I had a whole pain free month and got excited and agreed to be discharged as recovered. Literally days later I was using my old crutches calling up my GP to get re-referred. Start the process now, it took me 3 months to see my Rheumatologist again. Don't take the risk and if it does improve then fantastic just go for a check-up every now and then and they will be there in case you need them. Best of luck. Ix
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