Hi. I know you can’t diagnose, but I wanted to ask about symptoms I have & whether RA sounds like the right track, as I’m so confused.
Been having joint pain - started with left wrist feeling like burning & sore (I kept taking my watch off as it felt tight too), then my hands & elbows (both sides) got painful. Really stiff on waking or if I’m sat down for a while. At end of day, if I’ve done anything more than sit on the sofa (which I’ve been limited to as feeling so rough), I feel like I’m coming down with flu, joints screaming, and temp spiking (though I don’t feel hot).
GP ran blood tests - it’s complicated by me having had acute thyroiditis last Feb and since then WBC count high (specifically basophils & platelets). Those still up, waiting for RF result. CRP up a little bit. Doc asked about joint swelling but wasn’t noticing any.
But Saturday night, hands felt really tight, and spaces between first knuckles on hands were swollen - felt like fluid. This keeps happening in the evenings.
My Rheumatologist appt was done as urgent but isn’t til end August. I somehow found the NICE advice saying with joint swelling referral should be within 3 week (or 3 days if urgent). Obvs covid, but should I press? Or could this just be something viral? Don’t want to waste anyone’s time.
GP who called Monday & looked at blood results wasn’t remotely bothered. Even when I mentioned swelling. I took photos as tbh I wasn’t sure if that’s what the swelling would look like.
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KayS68
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Hi Kay. That hand does look swollen and all the other symptoms you have mentioned do seem to indicate an autoimmune disease, possibly RA. I'm sorry you are suffering like this but at least you have a Rheumy appointment soon.Although your CRP is not much up, if it's up at all it could be significant. And even a negative RF test doesn't necessarily rule out RA. Did you get a chance to show your GP the photos? If not you could ask the surgery to send you a message link so you send the photos on with an accompanying message.
Thank you so much for your reply. GP didn’t seem interested when I said I did photos, but I might send them to the original GP who did the referral. Good idea.
At least I have an appointment, that’s exactly right! Thank you!
Unfortunately, the GP who called you on Monday will have been focussing on the blood test results and probably not really listening to you when you mentioned the swelling. It is a real danger with telephone consultations, my consultant has a tendency to focus on the blood results, and it's really important that you emphasise what else is going on with your body!If you haven't started to do so already, I recommend you start making notes about your symptoms daily or regularly so you will have a summary of your symptoms by the time you see the consultant for the diagnosis appointment.
I was lucky to have face to face with the other gp 2 weeks ago, but you know how it is with phone appointments! I honestly *think* the thyroiditis was start of an autoimmune thing which is linked. It’s just that I haven’t been well since then.
Buy at least I don’t have too long to wait to see rheumatologist.
Thank you for the tip - I will do. I took photo of thermometer at 38.5°C the other day & put time & date. I’ll keep a log of it all. Great idea.
do as much as you can to be comfortable and maybe chat to your GP for some steroid to allow you some form of relief till the appointment if they feel by talking to you this w ould help. I had to wait 12 weeks for the first appointment which was in 2019 so though NICE guidelines say how quick it is not the reality that is happening out there in the clinics unless very lucky.However a lot points to an AI condition but just try to get rest in and pace yourself and b comfortable as you can.
Good thing your Rheumy appointment isn’t too far away. I can’t answer your question since I’m waiting for my follow-up Rheumy appointment to see if I have RA and/or another autoimmune condition.
Your hand does look swelled. The wrist pain with burning sensation makes me think of tendonitis. Hopefully your Rheumy can provide some relief and answers. Best of luck!
Your hand does look swollen.Although the guidance says 3 weeks to be seen, I think you will find many people wait a lot longer. I waited 4 months in 2017, after many weeks delay by my GP too.
If you are struggling pain wise , your GP many be able to offer some analgesia, so worth contacting them again.
Thank you so much. I’ve got naproxen & tramadol here - tonight have had to try both as I’m in agony. I’ve emailed the gp the photos & I’m going to call in a request for more pain meds tomorrow.
Yes I would KayS68 because you describe symptoms I got in my left wrist, used to take my watch off as well. It was like someone sticking hot needles in, and the area would sometimes be sore to touch and hot. Also I notice the slight misalignment in your knuckles the same as mine. I've had RA for 7yrs but with good control and care it can be managed. Mine started with an undiscovered long standing infection in my mouth, then an underactive thyroid that I could not have treatment for, for years.
That sounds exactly like my wrist issue. I’m glad I’ve got the appointment with the rheumatologist - I emailed the gp some photos, so she’ll be updated. I’m glad you’re doing ok. Weird thing is I had long sinus infection, then pneumonia earlier this year - 6 courses of antibiotics. Sounds so similar. Thank you for your reply!!
Only a Rheumatologist can confirm RA or otherwise but your symptoms are certainly similar to RA symptoms. I wish you all the best with your appointment.
Well hey there KayS68 feel for ya yeah really sounds like inflammatory arthritis to me however I'm not trained therefore can't tell you 100%. My hands look very similar to you and my US scan of my hands showed I had swelling around the joints. They did that for me as my bloods are sero negative. Well took me years for a diagnosis. They are treating mine as RA. Worth trying the Rhuematology Secretary and ask if you can be seen sooner. Take care let me know how you get on with it all I really understand how frustrated you feel.X
Could well be RA. My first symptom was a swollen right knee - but no pain! Just very stiff. Later a severe flare in the same knee WAS painful, but at the same time my fingers were swollen but not painful - they looked like a bunch of bananas. Toes too.
So quite a mixed reaction - but that's RA. It can wax and wane until it makes up its mind to go or stay! Everybody is different. I had a positive RF test right from the start. Treatment at the time was aspirins, "gold" injections and bed rest. I was lucky that the disease remained fairly mild for years because there was nothing much to be done; nothing like today.
Good luck; I hope you get a definite diagnosis one way or the other without delay as that's very important.
Thank you for your reply - I hope you’re doing ok now. My RF test result isn’t back yet (they said it takes longer), but at least I have this appointment. Just be good to get a diagnosis either way. Thank you!
Agree with Lola. Does look like RA as it looks exactly how my hands were when I first was diagnosed. I had no “valleys” inbetween my knuckles as my Rheumy Nurse said and puffiness was over all the back of the hands. Red, hot and swollen. Hope you get some answers soon.
I thought when the doctor asked about swelling, she meant like a hard type swelling - but this is puffy & squishy & feels like fluid. I guess it’s typical that today it’s better! Lol. Thank you for replying!
Sorry to butt in.. this is how my hands are my rheumatologist says it’s active disease . The squidgy stuff is synovial fluid caused by inflammation. Had to have my rings cut off . It coincided with my 30th wedding anniversary 🥺x
So does everyone with RA get puffy hands? If so, then I don’t have it because while my knuckles get swelled, my hands don’t seem puffy to me. I also don’t feel the hot in mine, even when they knuckles get red. But my hands/feet are always cold.
When Kay was talking about them burning, I was thinking nerve pain. I don’t get a burning sensation on my hands. My burning is in my face, which for me I know is nerve issues.
I don’t get heat or redness where mine’s puffy either. It’s confusing when I looked at symptoms as I didn’t know if mine was “swelling” going by their descriptions.
Definitely swelling. The symptoms are a guideline. You can have all a combination or just one . Mine tend to be swelling and mobility problems. And major fatigue.Up until recently hardly any pain or heat . I was diagnosed 5 years ago and now know showing symptoms 15 years before but again no pain or heat and bloods always good. Took along time to be diagnosed.
Major fatigue here too - even doing the slightest thing during the day (popping to get my hair cut) I am wiped out in the evening & feel like I got hit by a train. Plus the joints are sore & hand tight when I’m trying to make a fist. Really painful trying to open a jar. That kind of thing. Th for being so helpful!
That’s what I wasn’t understanding when I tried to find pics online to compare - I thought the swelling had to be the disfigured joints. Thank you for explaining too.
Mine aren’t red or hot either, just this squishy swelling. I had thought the doctor meant the actual bony but was swollen, which is why I was thinking originally it wasn’t RA. But I guess by what people are saying it really does present so differently for everyone. I even tried googling pics when my hands were swollen, but tbh could only find pics of when the RA was really advanced & the joints were very bent. The burning could definitely be nerve issue - you’re right - I have it with an old ankle dislocation. It’s so hard to tell. Are you seeing a rheumatologist?
Yep I guess it does appear differently for everyone. My redness doesn’t happen much, but that’s what got me finally paying attention. I kept ignoring things, even as my pinky finger got more deformed and people would ask if I had RA. My pain was more sporadic, but now increasing. My fatigue started way before when my neurological symptoms we’re getting bad. Like you, I was expecting RA to look like those advanced pictures. I saw Rheumy once and am waiting for my follow-up appointment to see what she says about my bloodwork and x-rays.
My fatigue definitely started first, but I put that down to the thyroid stuff then the sinusitis/pneumonia. But this is tiredness like I’ve never felt - my whole body feels like I’ve run a marathon or starting to come down with flu. GP made me do another covid test this week too - just in case. Hope your next appt is helpful!
It’s easy to for a person to dismiss his/her symptoms and first account them to other things. Problem is intense fatigue goes with so many things. And unless people have it, they don’t get how bad it is. Thanks and I hop my appointment is helpful, too especially since I’m paying out of pocket. 😥
Yes I’m in the US, and our hc system is abysmal. I need to find a PCP. Appointment Is Tues. if I get diagnosis, I don’t know what I’ll do. I can’t afford $1000/mo meds. I’m starting a new job and will have to wait months for insurance. The insurance I have has super high deductible, which is why I’m paying out of pocket. It sucks to be a US citizen!
Ughhhhhhh. I really feel for you. I lived in Chicago years ago, but luckily had no health issues. Now, with my son having had so many surgeries since birth & long-term health issues, and my own health issues, I’m so glad we’re in the UK. We are very lucky to still have free healthcare.
Just because you have chipolatas does not mean you have RA my consultant said but you have got something. Keep notes of what is going on, send you dr photos and start the great long marathon of RA?
Thank you. I’ve sent the photos to the GP & I’m keeping a note of symptoms - I keep checking to see if the RF result has come in, but no joy yet. I read that not everyone has a positive RA result, though.
I was surprised from reading this forum how many don’t have RF in bloods or other markers. I was so sure mine would show RF because my ESR and CRP were elevated, but nada.
Yeah - I was looking online & a lot of ppl don’t show RF, and some their ESR & CRP aren’t elevated. My CRP is, but not hugely, so GP dismissed it. It seems to be really tricky to diagnose, outside of symptoms - which I’m sure means lots of ppl don’t get diagnosed and treated for a long time.
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