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'!!

My dm has had it for years and it varies a lot - she has flare ups when particular joints are painful but it’s been managed quite well with drugs. She takes methotrexate.

I developed it in my 50s.
It's true its a degenerative disease but it's also true that it can be well managed with drugs. The sooner it's treated the better, the aim is to prevent damage to joints and retain flexibility and be pain free. All of which I have managed, albeit with some bumps along the way.
It may not be RA, your rheumatologist will look at blood tests as well as x-ray and physical exam.
My advice would be not to google until you have a diagnosis. And don't go down any alternative rabbit holes which will have you on special diets and taking unproven supplements unless, and until, you have seen a rheumatologist.

I have it and most of the time it is manageable, albeit I can't walk far, but I do have flares which are hideously painful and can leave me bedridden. But the key thing is that it affects everyone differently and it can be well managed by medication. They may need to adjust your medication a few times though to get it right, which is why I am having flares

My DF has it, was diagnosed 3 years ago. He's 82, and in daily pain from his hands, shoulders, back, neck and knees. He actually creaks when he walks........ he was diagnosed after having his flu, pneumonia and shingles vaccine all together, and they think it overstimulated his immune system.

He's on injectable methotrexate as he didn't tolerate the tablet form - he injects once a week, and takes folic acid the other 6 days. It does massively help and has dramatically reduced the swelling in his hands and fingers. His pain is managed with ibufprofen gel and oral paracetamol, and apart from horrible flare ups, he still manages to live a fairly normal life.

I developed RA when I was 19 years old, I am now in my late 20’s so had it roughly 10 years. There’s good and bad periods. Bad periods I can’t even walk because of the swelling and pain in my knees, good periods I can do what any other person can do however there is always some sort of pain and stiffness in the background. The fatigue can be quite bad though regardless of flare or not and low energy is a big problem for me, however I have got other conditions on top of the RA that doesn’t help. Steroid injections used to help but now have minimal effect and wears off within a week or 2. Steroid tablets really help and make me feel like a new woman, however I took them for years without being given any stomach protection (ppi tablets) and now have chronic stomach problems and can’t take them anymore. Tried methotrexate - I thought it was going to kill me the side effects were that bad. Now waiting on possible infusion therapy every 6 weeks. I have been told it’s likely I’ll need joint replacements by the time I’m in my 40’s x

I just want to point out I went years without any proper treatment apart from steroids and that’s why it’s got to this point, if it’s caught early and got under control quickly it’s a lot better out come. X

I’ve had it since I was a toddler (30 years!)

I’ve lived an almost completely normal life for years and years - fit and healthy, running regular 5 & 10k races, spinning classes, you name it. When it flares badly, probably about 3/4 times in the last 10 years, I really struggle with the limitations and the fatigue and I get quite low emotionally. Make sure the people around you that you rely on are aware of your diagnosis and as you get to grips with it what helps you so you have plenty of support for the hard times.

I actually think RA has made me so resilient and strong - it teaches you to embrace life and mobility when you can and batton down the hatches when you can’t.

Wish you all the best OP, feel free to dm me if you want to talk

I'm in my 30s and was diagnosed after my first child was born.
I am in a much better state now than I ed when I first got diagnosed. I have flare ups which can be painful but am mostly stable and pain free.

Diagnosed at 35 now in my 50s. And it's hard work currently. Have a look at the NRAS website, it's really good.

My dh has had RA for 15 years - he’s 40 now and it doesn’t effect his life at all and is completely managed by Methotrexate. He runs 5k a day and the odd half marathon. The best thing for him has been keeping his weight under control.

Like a PP it’s the fatigue that kills me. I often fall asleep/nap 2/3 afternoons a week. I’m worried about how I’d manage in a full time job. I think pregnancy triggered mine and I was diagnosed 4yrs ago. Had symmetrical pain in hands and forearms that would wake me up. Blood tests showed I had it. Rheumatologist asked me at first appointment if I had any swollen or hot places on my hands. I said no. She looked and I did . I must have just been used to it. Mine was caught early and I don’t have damage yet, I’m on hydroxychloroquine and I have monthly B12 injections. Generally I’m fine, past week I’ve had achey hands and feet and take a painkiller to sleep. I still don’t know what a flare is, maybe as I’m an early case they’ll be mild or maybe I just don’t recognise it yet

DH has it. He is on methotrexate but it doesn't seem to be doing much so we are worried about that. His knee is very swollen and clicks constantly when he walks.
I know someone else who has it. She's mid thirties which I thought was quite rare.
From what I have seen from both of them, it can take a while to get the meds sorted so hang on in there and take the support where you can x

I developed another type at 30 and by 50s developed it.
Like Anon methotrexate almost finished me. Had countless drugs which failed. Work with physio injections and codine.
I am keeping as mobile as possible.

Sorry for the late reply I've been getting the DC down for the night. Thank you all so much for your replies and i'm so sorry to all of you suffering this or knows someone who is!

If I do have RA I do feel a bit better hearing from others that it really can be controlled. I still feel so conflicted tho as to whether RA is actually what is going on which, I guess, is why i asked for people's early experiences. I realise that is silly anyway since it clearly affects everyone differently!

I was diagnose with chronic plantar fasciitis in both feet years ago where all treatment failed. More recently x-rays on what i thought was a torn meniscus turned out to be arthritis - apparently both knees have arthritis but i was told it was just wear and tear type and sent home with a list of stretches to do daily. I have also over the years suffered random 'torn?' joints or so i thought at the time. Twice my groin joints were so bad I could barely walk!

So I've been having a massive flare up with both my knees plus both feet with the plantar fasciitis but also this additional pain which wakes me up through the night in my legs. I phoned my GP to have this investigated because I am struggling so much with managing the pain now (on Tramadol) and just wanted another steroid injection which is when I was referred to the physiotherapist.

He asked me some questions, said it looks like everyone has been treating my chronic pains individually and appologised!! Then said he believes it is RA.

The reason I'm questioning this tho, is I do get very swollen hands. But they only ache if they are cold or when I am writing. Sometimes feels like my legs swell and my feet definitely feel swollen sometimes. But I have never felt like they are hot!?! I have felt incredibly out of sorts and exhausted the last few weeks, have chronic back ache etc which I have always explained away by my weight / having toddlers. And according to Dr Google I should have experienced sudden weight loss which I haven't

Sorry for the long post

Methotrexate has made a massive difference to my father, brother, friend's mum and my next door neighbour.
All are very creaky and stiff first thing in the morning, and they do have bad days. My brother can't play sport to the level he used to. But they function quite well and with little pain in daily life.

And thanks for not voting IABU, even tho I know I am for posting in AIBU

I know of two people with it, both in their mid 30's now. I know one of them was concerned about how certain treatment would affect her fertility. Both have it (to the outside) managed with medication so I hope the same will be possible for you!

PS. They are all minimum 20 years into RA. My friend's mum has had it 55 years.
Methotrexate was the game changer, even though it can have serious side effects and does need monitoring (hoping the regular blood tests for that continue during the blood tube shortage).

@Scarby9 it's really interesting you and others mention creaking / cracking joints. My knee and ankles crack sometimes when I walk and OMG I am stiff for ages in the morning. I have to walk down the stairs one step at a time sideways because I cannot flex my ankles!! And when i stand up after a period of sitting I cannot straighten my legs, back or hips straight away. Again I always put this down to being overweight! I'm not massive, size 16 / 18 and could never understand why other women I know my size and bigger didn't suffer the same pain / stiffness!!

Sorry to bring up Dr Google again, but I read RA can affect other things in the body such as bones. Has anyone experienced this? The bones, as well as surrounding tissue, in my heels are in so much pain right now that I am struggling to weight bare. I also read RA can affect blood vessels, lead to strokes etc. Does anyone have any experience or heard of this? I'm asking because I had a stroke when I was 30 (10 years ago, also around the time when I first experienced plantar fasciitis and groin joint pain) and have high blood pressure too.

Thanks again to everyone for taking the time to reply.

I'm never sure it's related but ive always had various musculoskeletal problems. Plantar fascitis, tenosynovitis, rotar cuff, etc. Long before I was diagnosed with RA. Im very slim and have low blood pressure so no comparison there OP
RA in flare (which is rare now) for me is worse in the morning, at it's worst it starts at 2 or 3am and I can barely crawl out of bed or walk downstairs. My feet get very painful, not just the obvious ankle / toe joints.
It improves throughout the day.

Sorry if that last part sounds crazy. I probably am rambling a bit! I guess i'm trying to assimilate what I read with things I have experienced.

I also recently noticed the toe next to my big toe on both feet is starting to deform. They were always straight but the 1st knuckle seems to be sticking out towards my big toe!! I was going to ask the physiotherapist to have a look but was so taken aback with what he said that I totally forgot.

I was diagnosed at 31 shortly after giving birth. I’m in a lot of pain five years later, injecting methotrexate. Probably take steroids 2-3 times a year when the pain is unbearable. Hoping to move to biologics but due to Covid my appoints since last April keep being cancelled.

The earlier you can treat it the better.

@FizziWater that sounds like what I experience. I can be ok going to bed then wake with severe pain in both my legs from my knee down - stiff ankles as well as crushing pain like severe growing pains. Also, I was slim when I had my stroke as well as developed high bp. It may not be linked tho, I also have FH which could be the culprit.

I think if it is RA i will strangely feel relief. My medical record is very long with various symptoms having been investigated, many of which ended as causes unknown etc so much so that I hate contacting my GP with anything new unless I really can't cope with it anymore.

@Twilightstarbright I have had issues for over 10 years. They might not all be down to RA. Can the rheumatologist tell (if it is RA) whether I am in the early stages or not?