Rheumatoid arthritis?

[marzipancustard]

I'm 29, been suffering with my joints since I was 11. I've been taking prescribed painkillers since I was 13 to manage the pain, & diagnosed with Joint Hypermobikity Syndrome. I developed other symptoms and crippling fatigue when I was 23 and diagnosed with ME when I was 25.

My mum has RA & has had it since she was 13. I was investigated for RA when I was 23 and my hands were incredibly painful and stiff. I had blood tests and an ultrasound and rheumatologist said it wasn't RA just a side effect of JHS and ME

Last year saw a physio to try and manage the pain and stiffness in my hands. It's since got much worse- in the last few months I've struggled more than ever before to use my hands (e.g. doing up buttons) and drop things almost daily. This is unusual as usually my flare ups are in winter and i put it down to the cold weather. I've also seen an increase in my fatigue.

Had a gp appointment on Friday where I finally managed to get a referral back to rheumatology. I am incredibly concerned that the condition I'm in now isn't just my hypermobility and also worried I was fobbed off 4 years ago with the ME diagnosis. My hands are the most severe joint I have trouble with but I also have quite bad pain in my jaw and less severe but very present pain and stiffness in my elbows, ankles, knees and hips.

I am just looking for some support on how to approach this appointment and how to prepare? Im having a blood test beforehand. Has anyone with RA been through similar issues? Should I stop worrying that this is RA and just accept whay the docs told me is true? I am struggling to organise my thoughts.

Could it be psoriatic arthritis or one of the other autoimmune conditions that cause similar symptoms- there are quite a few of them!

I would ask to get your vitamin d level checked, that gives me very painful hands

Oh dear, sounds awful for you sorry. I'm going through a similar set of symptoms to you, painful fingers, stiff joints in my hands, knees and hips . I also feel lousy with horrible fatigue and have definitely felt this flare up. I think I've got RA and have asked for a referral to a rheumatologist.
I will watch this thread with interest and hope you get the help you need.

Sorry to hear you're having a tough time too green

I've got my appointment, 24th of August. So now we wait...

posh Thank you I've had vitD checked before but I work outside so has never been a problem before

This sound awful.

I appreciate you are probably very fed up. Have you thought about seeing a property qualified nutritionist?

Also, agree with PP about vitamin D testing

Ok, so lots of things.

First of all, you’ve mentioned joint stiffness and pain. This could be arthritis, yes. You said you had a blood test and an ultrasound and you were told it wasn’t arthritis. Now you’re going to see a rheumatologist. Here’s what I would recommend.

Make a list of all your symptoms and don’t prescribe them to the ME, or just the JHS. When you combine your symptoms (stiffness, pain, fatigue), you may find that it adds up to another autoimmune disorder. I would, instead of telling the rheumatologist that you suspect you have arthritis, maybe tell him that because you’re experiencing a huge amount of joint pain and stiffness that doesn’t just line up with ME or JHS, you think it may be wise to make sure it’s not an autoimmune disorder.

Now, as for the blood tests. You say you’re having them before seeing your rheumatologist. If it’s JUST a rheumatoid factor test, then you may need more - something like an ANA panel, which tests for a majority of autoimmune conditions. Even if an ANA is negative, you may still have an autoimmune condition. Even if a rheumatoid factor is negative, you may have arthritis.

Other possible blood tests to check if your ANA is negative and your rheumatoid factor is negative:
CRP - the C-reactive protein who shows inflammation. Mine is always elevated to hell, even though my rheumatoid factor is negative.
Sed Rate - sedimentation rate is another test to check inflammation and shows how quickly your red blood cells “settle.”

IF your ANA shows nothing and your rheumatoid factor is negative, then consider asking for these additional blood tests before they haven’t been done already.

But hopefully you’ll get a rheumatologist who is willing to look at all your symptoms together and consider what they look like as a disease. And in fact, your JHS may be the key, as it places you at higher risk of rheumatic diseases, according to this: www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/

Good luck and have 25,000 of these for the wait

I echo everything RightYesButNo has written. You say your hands are painful and stiff, are they swollen and red. Typical RA flare is red swollen joints. I was diagnosed really quickly as I had an acute onset which affected practically every joint in my body, the ones you can see were all very red and swollen. . Definitely write things down to take to your appointment. And remember to get a list of all the blood panels they carry out so you know exactly what they have tested.

I remember in the beginning they kept asking if I had pain or just stiffness. It was so bloody frustrating as it took me a long time to be able to differentiate between the two.

Good luck

rightyes has given you some great advice. I'm 32 with JHS and was diagnosed with sero-negative RA six months ago. Be persistent if the blood tests are negative for the rheumatoid factor, it might be another autoimmune disorder or something else entirely but they tried to fob me off initially.

Unfortunately being negative for rheumatoid arthritis does not mean you dont have it .I have classic RA ,developed after having my son.My initial blood tests were negative for RF and my GP initially said I didnt have it,but as soon as the consultant saw me, he diagnosed me with RA and after some time ,with very acute/serious symptoms I eventually tested positive. It is very possible to be sero-negative initally but positive later.
My daughter also tested positive but has no symptoms currently Thank God!
I wish you well OP.Treatments are so much better and advanced than even 20 yrs ago so think positively. :) I have it 18 yrs and still going strong.
💐💐💐💐💐

Could it be psoriatic arthritis as that manifests in q similar way. Good luck either way, I am on steroid injections but they want me to move onto MEthatrexate. I would definitely push for more test if your not happy with your answers from next appointment

@marzipancustard Just realized your appointment was on 24th August. I hope it went well! I know you were suffering so much, with your hands especially.