Hi my lovelies hope you are all well and looking forward to the mini heatwave we are promised...lol.
I know this has been answered before but I wanted to ask if anyone has had pain in the joints but no swelling. I had a phone consultation today and was told the I possibly have both RA and osteoarthritis in my hard. Last time there was no physical synovitis in my hand but my joints in the hand were hurting.
I get swelling at times but no pain or vice versa. I swear my consultant thinks I'm making it up as so many times I have see the team but the inflammation is not there yet I am in agony.
Any advice or suggestions would be super appreciated 😊
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Ms-D
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I’m the same too that my bloods never reflect what is going on. If you look at my last blood results and then the swelling in my joints they don’t match at all. It always worries me that I won’t be believed if my bloods were the only thing taken into account. I am deemed as seronegative RA. I have been lucky to have a couple of face to face appointments in recent months which has confirmed just how active my RA currently is. I appreciate how fortunate I am to have a team that look at everything and not just my blood tests. x
I get a mixture of pain on its own, swelling without a lot of pain, or massive swelling and mega pain 🙃 It’s a hard one to pin down. Sometimes just get slight redness too - like my knuckles here
My best advice is to take photos when it’s bad and keep a symptoms diary. Because inevitably the day you see your consultant it will not be swollen at all!!
My hand is similar to LoneEra’s and like you, pain is the majority of my symptoms but I do get puffy fingers. I’m yet to be diagnosed!
I get all the symptoms together and sometimes individually.. I just never know from one day to the next.. hate the way they make you feel as if you are making it up. I detailed diary I think with photos. Fir goodness sake you been through enough xx
I think the advice of keeping a diary and photos is a really good one. Really helps me as by the time I reach out for help I am not able to communicate what is going on effectively as my fatigue and brain fog leaves me not being able to string a sentence together. I am so sorry that your telephone consultation consultation hasn’t come up with a way forward. Has there been any mention of changing your treatment plan? x
I am on biologics and had a flare up in December but then I tested positive fir covid and ended up in hospital very ill. I am taking Idacio and so far its working but my hands are hurting a lot more. I am taking this every two weeks so day 9-10 the pain creeps in and my knees and elbows hurt. Was on Benepali before but after 2 months it stopped but I took it for 5 months to give it a chance. Will see if I can arrange a call with my rheumatologist soon.
Sorry Ms D I know you have been so I’ll bless you and was asking was there any mention of changing your current biologic or adding in something as although it may be helping a little it is not working well for you at all is it? I was asking about meds as thought the phone consultation was with your rheumatologist. Sorry for getting the wrong end of the stick. Really hope you can speak to or even better see your rheumatologist soon xx
They don't want to add any dmards as I didn't tolerate them the first time round. Was taking predisilone but now stopped. I've not spoken to consultant since December but today has hand therapy and she said its both RA and osteoarthritis so need to speak to consultant to get better help with control. Very confusing ad bloods are always good.
Aww so sorry I am fully with it now. Forgive me being so dim. Totally get not adding DMARDs but with pain so bad maybe needing some more steroids to see if that helps settle things again. The current medication regime not working for you so definitely needs looking at. My bloods are always ok too but that is because I have seronegative RA. Definitely need a review with your rheumatologist my lovely xx
Oh you are struggling bless you lovely and hardly surprising with how ill you have been with Covid. I’m taking myself off to bed now with my audio book and pain meds to hopefully be a little more with it tomorrow. 😂 x
That must be so frustrating for you trying to convince them of the pain with no swelling as that’s how they know it’s active ... other than bloods .. hope it gets sorted soon
When I had my last face to face, I asked why one of my hands had a dip in the back and appeared to be sort of caving in. Felt really stupid when after examining them, the rheumatologist said that both hands were swollen, just one more than the other! They had been swollen for so long I didn't realise. Bet he thought me very stupid. They hurt but not as bad of some of my other joints so just thought the weakness etc. was old age. Silly me.
Hi Ms-D. When I first started getting RA symptoms, when I was in my late 30s, it did take a couple years to get a formal diagnosis, particularly as the flare ups were so random. My first blood test got lost and the second one was taken when i was feeling fine anyway. Fortunately at the time, I had a nice, sympathetic GP who was prepared to refer me to Rheumatology, even though he didn't think it likely they would find anything. However, crucially, he did also arrange some x-rays of my hands and feet before i attended the Rheumy appointment. These apparently clearly showed some erosion of the joints, particularly in my toes and the consultant then confirmed that he thought I had Sjogrens syndrome with R.Arthritis. I was put on a series of different drugs before eventually being offered Anti TNF treatment alongside methotrexate. This made a drastic difference and enabled me to carry on working and lead a relatively active life. Basically therefore, I agree, as others suggest, blood tests, at least in the early stages of the disease, often don't show up Rheumatoid inflammation. Perhaps see if you can get your GP to refer you for some x-rays?
I had xrays done on my hand in 2019 and showed bone spurs. Not had any scans since so not sure if anything has changed but will request that as will give me a better idea. I also have bursitis in right hip area and thats so painful. Two steroid injections via ultrasound.
I am lucky my consultant says there is no rim or reason to how your symptoms behave. In my right hand I have rheumatoid arthritis so I have the swelling and pain in my left I have osteo arthritis but just in my thumb. With my right it can be painful but not always swell. Keep a dairy I send it to him a week before we talk. It save times and gives a better overview. How things get better take care. Oh by the way my bloods never show any of the indicators, which he says is not out of the ordinary.
I appreciate the advice and will keep diary. This is very strange but I guess everyone is different right? This forum has been a true god send to me and everyone has been amazingly supportive 💗
I was diagnosed with Sero Negative RA and OA in 2016 by a lovely Consultant who looked at me as a whole not just my blood tests as they all showed normal.Unfortunately he left and the new Consultant disregarded everything and said I have Fibromyalgia and my GP has none of my original hospital notes so now doesn't think I have RA. Unfortunately I had to take early retirement from a job I loved due to the RA, so why does nobody thinks I have it anymore?
Our inflammation does not always show up in bloods, why do they not believe us. Its a constant battle.
I agree keep a diary/photos and don't give up. We believe you. x
Thank you. My consultant and team are really good. She doesn't go on bloods and actually on physical evidence. Just wish on the day I go there there was inflammation or swelling to show them. I will defo take photos and keep diary.
Hi MS-D - I am on a biologic - I have always had pain and a tender left hand for over two years now - I was supposed to take Leuflonomide but developed odd shooting like joint pain in my right leg, so I stopped. Everything else appears fine but my left hand is mostly tender, sore and at times causes me pain - I hope one day it will get better 🙂 all the best - Hessie
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