Hi all. I 38, I have erythromelalgia and fibromyalgia and I’m undergoing testing for connective tissue disease. I’m waiting on xray results, nerve tests and bloods amongst other things - and a second rheumatology appointment to discuss these results once they’re all in hand.
Previous bloods done at GP surgery haven’t indicated RA but it’s in my family as is OA, osteoporosis, spondylitis, psoriasis, lupus, Chron’s… (big family!)
However whilst I’m waiting I’m seeing changes in my hands and I’m in terrible pain. Not even cocodamol is really helping today. My GP thinks it’s osteo but is not confident. I’d be really grateful if anyone has any thoughts based on their own experience. The swelling in my thumb has been there a few weeks, a new bump in my little finger appeared just yesterday. The lumps are painful to touch, very painful at times. Im debating seeing if I can get my rheumatology appointment brought forward….
Thanks in advance!
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Winter_night
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As you mentioned you have psoriasis have you considered it could be psoriatic arthritis? Mine started with my right index finger looking like a sausage. If I remember rightly it doesn’t show up on a blood test the way rheumatoid arthritis does. Hope you get sorted soon.
Hi Finnbert. It’s something the rheumatologist asked about yes, and I have had small painless plaques of red skin on my upper legs and trunk here and there since having covid in Nov 2020. The previous time I had a similar breakout was as a teen when I had glandular fever and post viral fatigue syndrome afterwards. The plaques look like a very mild case of guttate psoriasis but I’m talking only 4-5 small patches on my whole body at any one time… they eventually turn pale and fade. No itch or soreness. I am due to see NHS dermatologist before I next see the rheumatologist so I will bring photos of that rash amongst other things. In fact I can post one here now but it’s not very clear. I’ve not had any very obvious swelling though just bumpy nodes on the painful joints. But I am starting to wonder about psoriatic arthritis because it’s generally Seronegative I believe…
On face value I would say it looks like osteoarthritis. However quite often a person can have both Osteoarthritis and rheumatoid arthritis. I have both. In my case osteoarthritis was my first diagnosis because my bloods didn't have the rheumatoid factor. Then I began to get obvious inflammation in my hands and further blood tests showed I had all the markers for RA. If you're in a lot of pain affecting you day to day I would try and bring your appointment forward.
Thanks Biofreak. There’s certainly a lot going on. I’m waiting to be tested for small fibre neuropathy in my hands too as I have loss of sensation. Having said that I’ve been saying for almost 2 years to my GP & various consultants that I think I have hand osteoarthritis due to pain and weakness and it’s rampant in my family… and it’s been dismissed until now when I have visible signs 😩
It's a common place to get osteoarthritis - and osteoarthritis is now thought to have a inflammatory component and can certainly be very painful. But if you are having a lot of pain then contact the rheumy team and let them know (I gather you're waiting for your next appointment?)
Hi oldtimer2, thank you. Yes that’s right - it’s still 5 weeks away and it’s a call rather than in person. I’m going to email him the pics I think as I didn’t have these nodes back in May when he saw me in person. I had a hand X-ray the same day that I guess will show some damage but it’s worsened since then 😬
After 20+ years of having RA this is a tricky one. I dont think you can tell from looking at your joints, I was told by a consultant that he thought the difference 'academic' but in order to get treatment for RA i've had to have imaging done of my joints. My experience of OA versus RA is that RA is more generalised inflammation. I have both which makes it even more confusing. You can get a blood test to look at your inflammatory markers but that wont necessarily give definitive results. It is well worth pursuing though - there are excellent biologic treatments for RA - more can be done for it than for OA. Good luck!
Thanks Cathie, that’s interesting to hear. I’m keen to know what showed up on the X-ray as my bloods have given nothing away so far. However I’ve had redness and swelling which has been put down to erythromelalgia. It’s confusing and I get frustrated that my body isnt cooperating in giving all of the clues! The rheum asked me to find out if there’s any psoriatic arthritis in my family … so maybe that’s a lead. And a health assessor at DWP offered up that he thought I had Seronegative arthritis… also in the mix is potential lupus/Sjogrens but bloods not back either… I’m at the point now where I just want to start some treatment other than tricyclics and opiates … I’ll try anything!
That's interesting about possible seronegative RA because that is what I was diagnosed with initially but overtime that changed to seropositive. However you mentioned in a previous answer to cathie that you have had some redness and swelling which is more indicative of RA.
Hi biofreak. Yes the redness and swelling has confused things somewhat… but as it’s triggered by heat, spicy food, caffeine and alcohol (and it affects my face and ears) it’s being put down to erythromelalgia for now. It’s never easy to know with these sorts of conditions is it!!
Thank you neonkittie. I’ve found this forum and the lupus forum so incredibly helpful and kind whilst dealing with the uncertainty. It’s been a lifeline! ❤️
Hi WN. 💗 At first the changes can be subtle but you know how it feels when something’s going out of sync and it’s not right for you. For me, my senior rheumy physio diagnosed all my finger issues! He’d seen so much RA. OA too. I hope you can get your consultant to scan your hands and as Cathie says, that’s the proof at an early stage. That blood tests also aren’t always conclusive for RA especially early on and I was sero negative at first.
I’m not on here too much at the moment as my medical situation is hectic and I’m juggling consultants/starting a new med, but I try drop by every week or so. Mostly some very valuable and caring, helpful people here with a lot of experience. We’ve all been newbies at some point. Good luck WN. 💗
It’s good to know there are plenty of treatments and to hear they’re well regarded by people who have RA. Fingers crossed for answers soon and thanks again! 🙏🏻
I remember being told in Oxford (12+ years ago) that they'd been able to really cut back on the joint replacements because biologics were protecting joints.
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