I'm new here and would love some help. My finger joint swelled up out of nowhere in January and then I became very stiff, sore and swollen in February. It affects both hands and feet. The fatigue was dreadful and I couldn't manage work and family life (children 7 and 5). I also had a persistent low grade temperature and I couldn't open doors or do my daughter's hair etc. I had two steroid shots, both of which helped with stiffness and the fatigue fog lifted in June (though I'm still nowhere near normal energy levels). I started sulphasalazine in May but didn't do well on it and had to stop. My rheumatologist is currently adopting a wait and see approach which is good (after the dreadful reaction to sulphasalazine I'm in no rush to start another DMARD), on the other hand I feel the year is slipping away and I'm not tackling this. I've been taking etoricoxib at night which has helped with stiffness and I no longer wake up in the night.
My problem is that I'm so up and down. One day I'm uncomfortable but think this will pass and then the next two days I can't see a way out. My main symptoms are pain in specific joints in hands and feet, reduced energy and sometimes a feeling of unwellness. My hands look relatively normal but my rings don't fit and the hands themselves feel hot and stiff.
I'm HLAB27 positive but my bloods are unremarkable. My initial diagnosis after ultrasound showed moderate synovitis in hands and feet was reactive/early, seronegative RA. I am hyper mobile apparently but have no other features of a hypermobility syndrome. The physio thought I might have a t4 syndrome but this doesn't fit as amongst other things, the pain is very clearly in my joints rather than travelling down my limbs.
Until this started I was a healthy and active 37 year old. The nebulous but persistent and debilitating nature of this has made me lose confidence in myself and I am wondering whether it's all in my head. My husband counters this by pointing out that my rings often don't fit and my hands look odd. I am happy in my life and work (I'm a teacher) has been, and continues to be, very supportive of me.
I would be really grateful to hear of anyone's experiences in this area. I've read around and it sounds in many ways like early RA but I wondered if this could be something else given I don't have strong morning stiffness any more which seems to be a key feature?
Any help or advice will be very gratefully received!
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Hi and welcome. I’m not a doctor but it certainly sounds like it could be RA to me! Although there are a number of other conditions it could be. Although blood tests are often inconclusive (?!) they do seem to carry a lot of weight in the original diagnosis. I had a sudden huge multi- joint flare up 2.5 years ago which resulted in my diagnosis of RA but my CCP and RA bloods were both positive so that even now - on minimal meds (12.5mg methotrexate a week) and just a few vague symptoms I feel that my RA is confirmed. Lots of people on this site are seronegative though and yet definitely have RA.
Unfortunately, it is often difficult to be sure in the early stages whether it is definitely Rheumatoid Disease or not. But your symptoms sound as if they fit and tests are often not very helpful - although again the synovitis shown definitely is suggestive. It's often the pattern that emerges that clinches the diagnosis.
It's often a good idea to keep your own diary of symptoms to take with you to your next appointment, together with photos of any swollen joints. It's more difficult for the doctor otherwise if you happen to go on a good day when there isn't much to see.
Thank you Oldtimer I'll do that! I have been taking photos of my hands but will keep a diary too.
Similar to your experiences, thought/told loads of different things before diagnosis until several joints flared at once. Fatigue is debilitating at first but improves with meds that work for you, first 6 months worst I think. Would just say I am rf and anti ccp positive and have never had ‘morning’ stiffness either, tho regularly asked about it at rheumatology; hands n wrists ache all time n hip, knees ankles stiff if sitting for ages, is all: I kept thinking/hoping it was something else. Hope things start to improve for you soon x
Not sure if anyone has fed back - I went private and had a CCP, this test is the definite test for RA my surgeon informed me not the CRP, which my doctors surgery did not offer. May be worthwhile asking for that test if you need a clear, yes or no answer. Wishing you well. Hessie
That’s interesting Helix, my private consultant said this is a definite marker which doctors should carry out..... My marker here was over 200 ...... he said regardless of the number this test is an absolute Yes I have it. Hmm very interesting 🤔- thanks
Well I was told it's only 90% specific, i.e. certain that if you are positive you have RA. And it's generally not done by GPs , but should be done by all rheumatologists. DIfferent doctors!
Much of what you've written rings true for me and I've had to conclud over time (along with my consultant) that I too have early RA. Despite this my head frequently challenges me on this as my symptoms seems so random and changeable although over time when I reflect they are not! I started with joint pains in hands in Jan 2017 which persisted and then included pains in feet well ankles and toes. I had hideous fatigue. Not alot of swelling but some and all bloods normal. Not much on Xrays either. However my symptoms were bilateral and responded to anti inflame and were enough to be diagnosed with inflammatory arthritis / RA in the May 2017. My symptoms continued to develop into shoulders and elbows sometimes and fatigue worsened. Other than very occasional steroids which have helped, nothing else has yet very much so it is still considered 'out of control'. I tried Methotrexate for 5 months but couldn't tolerate it and then was initially fine on Sulfazalasine first few weeks but then got itchy/rashy so had to stop. I'm currently on hydroxychloroquine and Etoricoxib (from beginning ) and awaiting next appt to add in another DMARD. That said, I do think I've had a slight improvement since April this year (15months after first symptoms) due to the anti inflams and hydroxy but its not significant. Anyway, I've ended up having to leave my job as a Bereavement Services Coordinator in a hospice as eventually, after lots of struggling, went off sick last November and never felt well enough / fit enough to return. I've had to give in to The RA for now until I'm on The right meds and hopefully can work again. I'm 54. The hardest thing has been getting my head around the illness. Like you one day I'm uncomfortable but think well I can cope...the next day I'm totally fatigued and in pain doing basic things like chopping or holding my phone and it feels overwhelming. Its so sad sometimes as holding my new grandson can have huge consequences now and having him for a few hours often means a day in bed or doing not much on the following day. I don't have huge swelling like some people, and if you looked at my hands you'd think they looked normal although to me they are fatter than normal. I do get occasionally redness on joints, warm/hot throbbing joints and feel im slightly hot very often. I do get some morning stiffness and pain on resting and in night but again it's changeable etc. Psychologically this illness is tough because for many it's inconsistent, changeable and unpredictable and for many invisible. I do now accept (mostly) 20 months down the road that I have RA. I do sometimes wish I was seropositive or had massive swelling to make it easier, more visible to self and others but when I'm bad, and I have RA symptoms everyday, but when I'm a 8 or 9/10 I absolutely know it and absolutely accept it. Luckily, like you I have a husband who points out that my hands and feet don't look right, that I don't do half the things that I used to because I'm so fatigued, that sometimes I cry from the pain in my wrists or ankles or shoulders etc and so when my heads working against me this reality checking really helps. Sorry for rambling. Don't know if this will help but I hope so and feel free to ask anything if I can help.. Good luck x
This helps more than you can imagine. I oscillate between feeling a fraud and feeling so bad that I worry my life is over. But even on "good" days I'm right on the edge between uncomfortable and in pain. I obviously don't want to have a rheumatic disease but I'm at the stage where I feel a diagnosis would alleviate the stress of not knowing what's happening. My rheumatologist said "I don't think you're showing all your cards yet" which is why he wanted to wait and see but as time passes I desperately want to feel like there's a proactive course to follow rather than this endless miserable waiting. I'm not working because of the summer break but I'm just not in a position to do a full week's work at the moment and worry that September will come all too soon and I'll still be like this and then how will I manage?! I try not to think about it but there's only so much positive outlook you can maintain!
Thank you for writing. It's so nice to hear from someone in a similar boat - my parents keep referring to the flu they had in the winter which I've not found hugely helpful....
Yes it's that or "oh I get a bit of arthritis in my finger" which is a long way from the RA symptoms I've experienced. The other thing with Inflammatory Arthritis that I've learned from forums, group's and research etc is that consultants seem to vary in their approach or diagnostic criteria etc which makes it extra confusing. I really get the 'Fraud' thing. Being seronegative there's nothing on paper to prove it yet my symptoms are very very real. I don't want to be negative but even with the diagnosis which for me was May '17, it's been a long road in getting the meds right. I'm still not there and was told that it can take up to 2 years for that. That said I have read people who say they were put on meds vety quickly which they tolerated and worked for them so within 6 months they were feeling a lot better. I guess what I am saying is if it is RA r another inflammatory arthritis, it seems that the experience of the disease and it's treatment and success is all very individual so it's worth just being aware of that. The other thing i just wanted to say was that I struggled on with work trying to keep everything going when i perhaps should have gone off sick sooner. I dont know whether it would have made much difference to my outcome but I do think it contributed to my symptoms getting much worse from the stress and exhaustion. I do hope you find some answers soon. Best Wishes.
I saw the rheumatologist today and am thoroughly confused. He says he doesn't think it's an inflammatory arthritis as the MRI only showed a slight tendonitis (ultrasound in May showed synovitis) but has prescribed hydroxychloroquine alongside the etoricoxib I have been taking.
I have symmetrical pain/stiffness in hands and feet, positive squeeze test and my fingers are so fat I have no hope of wearing my wedding ring. He saw all of this and there is no suggestion he disbelieved my pain/inability to live my normal life but he says he wants to take inflammatory diagnosis off the table and see me again in three months.
Has anyone else here had this issue if appearing and disappearing inflammation but the pain/swelling remains?
I have recently been diagnosed and know that, although I would rather not have it, it is a relief to know exactly what is wrong with me. I started to feel like a hypochondriac going to the GP's so often !
I should be getting a script this Friday for meds, a little concerned about which one he gives me Sulfazalasine or Methotrexate, I am leaning towards the sulfazalasine at the moment, but worried about the side effects. Anyway, my first NHS appointment isn't until Oct 31st ! I work full time and am glad I have been able, through work, to get my diagnosis quickly ....no way could I have waited until the end of Oct, which would have been 4 months ! I very much understand the feeling of helplessness, and the downs. NO its not all in your head..........I feel like I should be 100 at the moment not 44 !!! Its frustrating and depressing but I have to try to keep positive and keep thinking that it could be worse !!!! Hope you feel better soon !
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