To ask how your rhumatoid arthritis affects you or someone you know

[BuffyTheBuffetSlayer]

I'm sorry, posting for traffic as the health boards can be really quiet.

I have just been told by the physio that he believes I have rhumatoid arthritis due to pain in several joints plus being young and x-rays showing knee arthritis, so he made a referral to rheumatology.

But I know very little about it other than the generic info through Google. So I was wondering what early symptoms people experienced and how has it impacted quality of life later on? Is there anything I can or should be doing? Has anyone been referred with similar symptoms and it turned out not to be rhumatoid arthritis? My head is still spinning at reading 'degenerative disease' and 'fused joints'!!

That’s good you are getting pain meds now.

Bloods for me this morning, they have been told to stop sending them in but have and marked mine urgent and hoping lab will process it.

Said to the nurse I think I have RA and having a flare, she said she is too ! She did say not to get hopes up about blood tests being positive as she often sees people pinning their hopes on it then they aren’t.

Explained that regardless of results I am going to ask GP to be referred privately to see a Rheumatologist as feel I need some really good advice and I want to see one on the Consultants I know so good and I met him briefly at work years ago , he is lovely,

By chance bumped into a friend who has been to see him which I didn’t know, she said he is great. Am very fortunately in position to be able to afford a couple of appointments and will live on beans and toast if needs be ! Thyroid and B12 being tested too.

My Mum has it in her hands, feet and knees. She has had it for about 15 years and now is starting to see the problems that need life adjustments. One thing that she finds a help is to cut out sugar or inflammatory foods such as highly processed carbs, grains, wheat and nightshade family. She still sometimes has some of those foods like if she is on holiday but she pays for it. It is a bit trial and error but foods deffo play a big part. She also takes turmeric supplements, high strength Vit D, C and Omega 3 fish oil.

She takes an anti inflam tablet only if she is doing something like walking a lot and she tells me that the effect of one tablet seems to last a few days so she feels better not taking them every day.

Im sorry you have been diagnosed, it is a bit of a life changer but I believe you can manage it if you start off early.

I actually feel I have it myself and am yet to be tested. My mum has it as does my sister. I also have weird autoimmune stuff going on. I wake up sometimes with swollen and painful finger joints but like I said in my other post, I notice than when I remove sugar, fructose, glucose from my diet the swelling goes away. When I do eat high sugar things the pain and swelling comes back.

I'm a member of a few arthritis groups and have never heard of anyone being completely bed bound etc. I would question that.

I have one wrist that's now fused (because I ignored the pain for years before getting it looked at) but otherwise well under control with weekly Benepali injections. Methotrexate didn't make much difference.

@AnyName1

I'm a member of a few arthritis groups and have never heard of anyone being completely bed bound etc. I would question that.

I have one wrist that's now fused (because I ignored the pain for years before getting it looked at) but otherwise well under control with weekly Benepali injections. Methotrexate didn't make much difference.

I'm exactly like you! One fused wrist, weekly Benepali injections keeping things under control and Methotrexate did nothing.

@AnyName1

I'm a member of a few arthritis groups and have never heard of anyone being completely bed bound etc. I would question that.

I have one wrist that's now fused (because I ignored the pain for years before getting it looked at) but otherwise well under control with weekly Benepali injections. Methotrexate didn't make much difference.

Can I ask what you mean by "I would question that"?

I'm not lying about my db being bed bound with RA. I've also said he has muscle wastage which doesn't help.

We’re in the middle of trying to move, we were looking at moving out of area which is close to where I grew up to be closest to my Dad. I have one close friend there.

I know don’t know if that is sensible as have a great support network here amd some wonderful friends. I think the stress of trying to move is contributing to current flare of whatever this is. I wanted a big garden but think that might not now be sensible and feel there are so many unknowns. I don’t think I am well enough to sort a move currently.

Not sure what to do. I see GP end of next week and am asking for a private Rheumatology referral. I don’t know that I have RA but if not then that leaves the question of what on Earth is going on iwthmke?

Any thoughts very gratefully received,

Thanks @StillSmallVoice @Volterra Knowing I have pain medication when I need it is such a relief!! I used to get a full month supply but my GP kept slashing my prescription by more than half without any discussion with me, despite the pain clinic recommending I needed to be on them so it was a constant battle. I was told the head Dr wanted everyone on chronic pain medication to be weined off because a study showed feeling happy significantly reduced your pain!!! In the end I stopped fighting and accepted the lower amount. It was when my lesser prescription was slashed to 30 tablets for the month I phoned the GP in tears because pain medication can be the difference between having any quality of life. If I do have RA I am looking forward to (hopefully) never having to rely on opioid pain relief. The stigma is just awful!!

@Volterra have you heard back about your test results or is it too early. I'm hoping they processed them for you too. You'd hope they would with them being labelled urgent! Hopefully you see the Rhumatoid Consultant quickly too. I'm thinking the same as you, if its not RA the what the hell is it because something is wrong! I shouldn't be having all these symptoms and pain if I am healthy and well 🤷‍♀️ Goodluck with the house move. It's always a stressful time, but I imagine even more so with everything you've got going on too. Although I do love a change of scenery!

@aalidfeie I'm sorry about your DM and DS having RA. Have you spoken to your GP about your concerns that you might have it? The consistent advice so far on here from those unfortunate to have it is to have it diagnosed as early as possible to hopefully hault further damage. I haven't heard anything yet about my referral, I supose its only been a week so very early days. My DF told me he has it, his hands are deformed and his fingers fused with limited movement. He's never had an official diagnosis, but I can't think what else could have caused that?!

@AnyName1 I met someone bed bound with RA years ago through my job as a visiting officer so they are out there unfortunately.

Well Buffy you are clearly going to have to smile more (I feel GP a touch optimistic in the middle of a Pandemic).

Seeing GP end of next week for results and to hopefully sort referral.

@Volterra yeh I was pretty speechless!! At least the Dr I recently spoke to was also a bit at the study and acknowledged chronic pain was a little bit more complex than just feeling happy!

I’ve just been diagnosed with osteoarthritis by consultant in Rheumatology. I think I have RA too but markers in bloods don’t back this up. Interesting to read that this is not always the case. Im waiting for a referral to Orthopaedics but given pandemic I guess I’ll be waiting a long time.

My GP has prescribed dihyracodeine but it’s not making much difference. Slight improvement if I also take ibuprofen with it. Main pain in both knees and ankles. Loss of power in wrists/hands. I have very swollen knees and feet. Going down one stair at a time sideways. Painful! Disturbed sleep due to really hot painful legs. My shin bones are v painful. Like the bones are going to come out of my skin. Same in my buttocks.

Currently working from home which in one way makes it worse as not moving much but in another manageable as I’m now quite anxious about going back into the office and how I will manage stairs etc. Im a bit embarrassed at how slow and stiff I am.

Only 50. Both parents had both OA and RA. Xrays say I need two new knees but significantly overweight and can hardly move because of the pain so bit of a vicious circle as I’m sure I will be told to lose weight before surgery.

Im going to go back to GP and see if I can get any better pain relief while I wait for hospital appointment. Also wondering about getting fluid taken off my knees and/or steroid injections as I’m in so much pain x

Has anyone else had high platelet levels in their blood? DP's was 480 the last time and I panicked myself by consulting Dr Google.
Is this a common thing with RA?

Had mine since the 90s. I was very young and it's taken until now, to find the right treatment. I have had a horrible year with it until I started biologics. I'm starting to feel it kick in now!!
My advice would be. Make the most of your good days. Don't get angry over what you can't change. It's an ongoing disease but don't let it make you bitter like it did me for a while xx

@Orla1970 I'm sorry you're having such a hard time, I totally sympathise, it's just awful dealing with this everyday. Have you been referred to a pain clinic before? I've been twice and both times they have been amazing. I know that's not everyone's experience but for me it was the first time I had a professional give me their full attention to listen to what my pain was, where and the ways it impacted my life. Then proposed different (strong) pain medications / combinations to try.

Not yet so referral to pain clinic is on my list!

@Orla1970 hopefully it's not too long a wait and they sort you with better pain relief. GP Dr's can be so unsympathetic!

DP had a blood test this morning and then ordered his medication via echoat about 3pm. . It got approved so is this a sign that the bloods were fine?

echo at

I’m sorry, I don’t know the answer to that Lemon. I always try to make sure I get blood test results as when work In a London Hospital in Rheumatology the Registrars at the time weren’t checking them as they should have been. Assume now they are online that wouldn’t happen.

Does anyone get pain at bottom of shoulder blade? Wondering if I have pulled something as started when rolled over in bed. Yesterday was hideous, doesn’t feel as bad I think today.

@Volterra Yeh, I often have pain at the bottom of my shoulder blades. I have mentioned it a few times to Dr's over the last year but its always been along with describing other symptoms.

Ah ok thanks

That is worrying then. Hopefully someone is checking DP's. That is awful that they are not monitored correctly.

I've had arthritis since I was 7. Was worse as a child but left me with quite restricted mobility in hip, knees and elbows. But ... it's not stopped me doing much. I've played a fair bit of sport and still play tennis. I take occasional diclofenac when I have a flare up (although doctors are reluctant to prescribe it now due to the side effects and my consultant made me promise not to use it for a few days at a time).

I have mild pain but have pretty much lived without taking painkillers. I've had steroid injections in my knees, elbow and back which did a great job in reducing inflammation and pain.

The annoyances I find are from the restricted mobility, so I can't crouch down or do up the top button of a shirt. But I've led an active life so I can't complain. I'm booked in for a hip replacement on one side, but that's from damage done at childhood and I've lasted for 40 odd years with it.

It's probably due to having it when I was too young to really understand the consequences but it's been fine. Frustrating at times but I used to see kids in wheelchairs at the arthritis clinic so I feel very fortunate. It can vary hugely in scale and severity, and can flare up, then settle back down as quickly. When I was younger, I cut out various dietary things (particularly red meat) and it reduced the inflammation but I gave up on that after a year or so.