Swelling with RA and other symptoms, grateful for advice.

[C2691]

Hello,

I’m just curious to know if swelling is always part of RA. I’m currently trying to find out what it causing my widespread pain and symptoms.

I have painful stiff wrists and fingers & recently spine and shoulders and neck getting increasingly stiff and painful even after just sitting in a certain position for 10/15 mins. Lower back is stiff and painful. I don’t think I have any swelling at any of my joints though. If I do activity e.g. a day of house work, a long ish walk or any kind of exercise (rare because I’m in too much pain) but if able to... for 3-4 days afterwards, I’m in pain struggling to walk with my hips.

And another pain I deal with on a daily basis is pain in my jaw/deep behind my ear this probably lasts any were on and off from 20 mins to 3 hours a day. Never had a diagnosis for this either. But dr said it was possibly neuralgia.

I’m currently seeing my GP to try and sort out gynaecological and abdominal pain that I have no diagnosis for so far. I’m worried about bringing up all my other pains because I already feel like I’m not being taken seriously and if I add more symptoms to my long list of issues I feel really silly! But I’m in so much pain every day and it’s not getting any better.

I’m sure I shouldn’t feel like this. I’m 26. I have a sister who has another autoimmune disease so I know this is a possibility but again feel silly bringing things up with my GP or like they think I’m just making stuff up.

Thank you to any one who takes the time to read and reply. 😌

[Nettac]

I think you just need to bite the bullet and talk to your GP. Do explain that there is a history of autoimmune problems in the family. Just ask if you can be referred to rheumatology.

[C2691 in reply to Nettac]

Thank you. 😌

[BlackNov]

Hello C2691,

I would recommend you speak to your GP. Try not to over worry about what they will think (I really should take my own advice!) 😋

My problems started with stiffness in my toes and all over exhaustion. The stiffness then spread to my hands, wrists, ankles and my spine. The swelling came a few months down the line.

I completely understand with what you say about your hip pain. I find that if I go out, like for a longish walk- that by the evening I will start to feel the pain coming on. My GP thought it might be bursitis for me, but I have to wait for my Rheumatologist app for confirmation. Have you been to see a Physio for your hips?

I also suffer from jaw pain from time to time. I try not to eat baguettes,and i dont chew gum as much etc, to reduce the strain because my jaw will pop and crack. Quite unappealing! Lol. 🤢 do certain things make your jaw pain worse?

I really dislike going to see GPs as well. I had to go for the pain and I am very glad that I did. I would recommend you seeing them sooner rather than later, as it can be a very long process. I am 5 months since I first saw my GP and yet to see a Rheumatologist and I don't have a formal diagnosis. I am 24, but I feel like a completely different person to myself last year.

Sorry for the essay! But you aren't alone. I have found this site to be very useful and it has helped me feel not so alone in all of this! I hope it helps you too!

Best wishes, C2691

[C2691 in reply to BlackNov]

Thanks so much for your reply. I haven’t had physiotherapy as I haven’t yet mentioned the hip pains to GP. 😖 I think the cold may make my jaw pain worse but I get it when I’m not cold too so that might just be coincidence. Thanks again for getting back to me. 😊

[Hidden]

Imho no, visible swelling is not always part of it: most painful my hands have ever been, clawed and unable to use, they did not look swollen at all. Conversely when i've had swollen fingers at start it didn't hurt as much. Don't worry about asking GP for blood tests especially with history of auto immunity in family, took me about 6 months to get diagnosis, then only because of raised esr and swollen joints at same time. Sure i had it some time before this, had other large joint issues too, not typical. You are not being silly: good luck.

[C2691 in reply to Hidden]

Thank you very much 😌

[Neverending63]

I could never see any swelling but others could including the rheumy. I guess I had just got used to my hands as they were. I went to GP with pain and stiffness and was diagnosed with RD and a year later polymyalgia as well. It did show up in my blood results though.

You need to have that discussion with your GP sooner rather than later. Then at least he can get bloods done and start the process. Good luck and let us know how you get on.

[C2691 in reply to Neverending63]

Ok thank you for your advice. It’s probably not RA but at this point I’m just looking in to anything that could be a possibility with all this pain 😒

[nomoreheels]

Hiya C2691. Please don't presume you'll not be taken seriously & not tell your GP about your further issues. Until you do you won't know. I can understand why you feel as you do but a GP should take anything you tell them seriously whether you have other ongoing issues or not. Your gynae problems are a separate issue & may not connected (other than hormonally, I don't know if you're already aware there's the thought the two can be related) so do write a list of all your symptoms, your GP will then consider which actions to take. Your sister having an autoimmune disease is definitely something to include too as another thought is it could be genetic.

Re your jaw, being told it's possibly neuralgia & not being investigated to prove whether it is or it isn't wasn't very acceptable was it? There was a reason you had those symptoms, it needed to be determined just what was the cause.

So, no feeling silly or thinking your GP won't take you seriously, they shouldn't. Not only that they should also know the earlier you tell them your symptoms then the earlier you have a possible diagnosis & start treatment the better the prognosis. If you do find some resistance just ask calmy & politely if a simple blood test can be taken, Rheumatoid Factor & inflammation levels.

Maybe if you have a read through the NRAS site, check out symptoms & see if you can relate to them nras.org.uk, that may give you some ammunition if you feel you may be facing a battle. You can always request you see another GP in the Practice of you don't feel you're taken seriously. Good luck & let us know how you get on.

[C2691 in reply to nomoreheels]

Thank you. I had private blood tests done for my thyroid a little while back. Part of the test was inflammation marker. CRP High sensitivity. It came back normal. Would this indicate I don’t have RA. my result was 0.2 and the range was 0.00-5.0.

Do you mean gynae issues can be connected to RA?

I will look at the website. Thanks 😊

[nomoreheels in reply to C2691]

If you have a hormone imbalance (oestrogen), could be. I have endometriosis & whilst I was diagnosed a long while before I my RD diagnosis with that & my Nan having had RD there's the thought they could be relevant.

[Uga35570]

I agree with others see your gp again the sooner the better and be forceful and ask for a rheumatology appointment / referral they will understand varying pain points better than a gp and hopefully find a solution good luck!

[C2691 in reply to Uga35570]

Thank you 😌

[nomoreheels]

Just an added thought, an example of sorts. I'm just back from seeing my GP for two reasons. One was a review regarding a recently increased dose of a med, but the other was to question about painful upper arm muscles which I've had off & on for a while but permanently for around a month. Before examing me she said she suspected PMR (Polymyalgia Rheumatica) & has arranged for me to have a couple of blood tests tomorrow, EST (erythrocyte sedimentation rate) & CK (creatine kinase), the second to rule out statin involvement. She's ringing me on Friday with the results. Typical symptoms of PMR are (according to Arthritis Research UK) shoulder pain on both sides, morning stiffness that lasts at least 45 minutes, high levels of inflammation measured by blood tests, new hip pain on both sides, no swelling in the small joints of the hands and feet, no evidence of rheumatoid arthritis, such as swollen joints or positive blood tests. Just thought it was worth mentioning.

I've added this to show you should let your GP know of any changes, aches, pains whatever, because you just don't know until you report them if there's something of concern that needs medical attention or at least testing for to confirm or rule out anything. Just as an aside, I've had shoulder involvement for a little while, had a couple of steroid injections that have been successful. My GP is wondering if this could have been PMR related as I've responded positively to steroids... treatment for PMR is steroids (she's recommending a starting dose of 40mg if I am diagnosed).