Hello, I’m Emma I have been referred to a rheumatologist and have first appointment on Friday. I have CRPS in my left arm and refer to my right hand as my good hand. I started experiencing pain in my good hand several months ago and thought it was due to over compensating for my bad hand. I had moved house at the time and put it down to that.
I noticed my hand was swollen and middle finger was misshaped and I am unable to make a fist properly. GP said it’s RA. I also experience stiffness in my feet and knees when I move after being sat in same position for a while. I have great difficulty in opening cans and jars and am unable to carry anything of any weight. My joints feel tender to touch as if they are bruised. I now have to pace myself and can no longer multi task.
I have had bloods done and GP asked for one of them to be repeated, not sure why. I have had X-ray of my hands done too. My mother has had RA for 20 years and my younger brother was diagnosed with it. I am worried that I have it too and think it is likely.
I am currently taking naproxen which is helping and I take zapain.
My question is what to expect at my appointment on Friday and should I not take the naproxen a couple of days before as I’m likely to have bloods tested again? Many thanks for reading this long post 😊
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Embabe
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This early stage is total overload....take it one step at a time.
Hi Emma
Sorry that's happened. I got rheumatology appt after raised esr (inflammatories) in blood at GPs, after 6 months of various symptoms like yours. I did list/dates of these for rheumatologist as lets face it, first appt pretty stressful. On appt i had RF blood test, then anti-ccp, both positive. He also did ultra sound on hands. They usually weigh you, do blood pressure and urine test too. Next appt saw specialist nurse and meds prescribed. Hope thats helpful; youre probably more knowledgeable than me if in your family. All the best.
PS i was taken naproxen still as thought tenosynovitis at first but others may know better than me
I know, shell shocked doesn't describe it; 8 months in for me. It does get better than this, honest 😃 Good luck at your appt. forgot to say, they do give you helpline as well x
It does sound like RA so chinup the diagnosis is the hard bit and for most people the meds do work well I'm in remission except for the odd blip whwn I take Zapain too although 2 tablets make me sleepy and I'm careful with it. I like you had hand trouble and iys still the first thng to come back when I do as we alldo sometimes over do it. I did walkup 152 mountain stepsin 1 go lst year in Croatia and was fine yet 3 weeks later changed a bed and boy did I pay for that. So RA is so individual I strongly urge youto join NRAS as they have stacks of great info and don't take onboard a lot of the angst that sometimes is posted as bad news is always more interesting than good. I really am very well now and not really troubled by the RA and don't expect any long term difficulties as long as I take the meds and really life is normal.
I wish you well when you see the RA consultant, mine is lovely and good humoured too which always helps.
Lefludamide or Arava as its known in th US (I'm in the UK) it made things worse for a while then lifted the fog and pain and swelling all gone. Had a couple of blips probably due to a stress related flare but that has only happened twice in four years. I took MTX but it made my hair fall out in handfulls so was stopped although I did feel better. Now though life is normal and I've even had an operation whilst taking it on my RA deformed foot so now I have normal feet as well ! x
So pleased that something works for you. I really don’t want to take any more medication as am taking pregabalin and amitriptyline for my CRPS and hate taking them lol!
I sincerely hope you don't get the RD diagnosis but if you do there is a vast array of treatment options available. Oooh. I nearly forgot. At your first appointment with the rheumatologist it's best if you wear something easily rolled up, rolled down or removed. Pretty undies a must! Hugs
Thank you all so much for replying! One more question, I’m also taking pregabalin and amitriptyline for the CRPS. Will this complicate things in terms of treatment? Does anyone know?
Hi Embabe, I’m in South Wales too. What hospital do you attend? I go to Nevill Hall and see Dr Stuart Linton, Rheumatologist, he is very good. I’m 4 years on now and have been through all the tests, bloods didn’t show anything, no did the ultrasound scans in the beginning, fingers very swollen and painful and are now disfigured. Been on mtx tablets, changed to injections, which are much better, can’t take naproxen or ibuprofen or strong pain Meds. Had my DAS score done with Rheumy nurse before going on Biosimilar Benepali about 5 months ago, still not had any relief from pain or swelling, have had another X-ray of feet and hands, not had results yet. I take Pregabalin for Fibromyalgia along with a load of other Meds. Hope your appointment goes well, don’t forget to get the Rheumy nurses help line number as they are very helpful.
Hi Titchyj I’m seeing Dr Linton too, but in Ebbw vale. My mother has been treated by him for many years and said he is understanding. Nice to see someone who has a good reputation. I also take pregabalin for CRPS which is in my left arm/hand/shoulder. Thanks for the useful information. Nice to speak to a fellow Welsh.
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