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'!!

I’m waiting for the results of some blood tests for RA so this thread is very interesting for me. I seem to have quite typical symptoms to RA apart from the fact I don’t feel tired or ‘ill’ with it - I wonder if it’s just osteo arthritis that’s weirdly symmetrical or something else.

I feel so sorry for all of you that have to put up with RA. It’s good that it can often be controlled with drugs.

With several of us having issues that are being investigated maybe we could keep this thread going or start a new one?

Am playing a game of spot the swollen joint this morning! Taking photos for future reference .

Sorry just saw your post above Buffy. Yes they are for RA.

I don’t know if it will help but about 20 years ago I spent a couple of years interviewing people with RA, looking at their disease activity, asking about pain levels and how it affected their lives.

At the time it was thought about a 3rd would report symptoms in line with disease activity, a 3rd would report more a third more so other factors come into play and it isn’t clear cut. I did see some horribly deformed joints, won’t lie - but they were mostly in older people who had had it for many years before the current medications were brought in and I think they are a massive game changer.

@Volterra

With several of us having issues that are being investigated maybe we could keep this thread going or start a new one?

Am playing a game of spot the swollen joint this morning! Taking photos for future reference .

This would be good. I've found it so useful reading and sharing experiences with others going through the same.

It can be a very lonely illness to have.

There used to be a thread, came across it recently when searching.

I am setting my first goal. I want to get back to Parkrun. Just to walk it and maybe a little light jogging if things go well. I could run 10k just under 3 years ago and can barely walk the dog currently.

My DF has it. He has to take methotrexate to manage the pain. He also has steroid injections at the hospital when the pain is very bad. He is disabled as a result. He has developed diabetes and sjorgens syndrome. It’s shit but I think if he ate healthier and did some form of Pilates he’d feel a lot better!

With several of us having issues that are being investigated maybe we could keep this thread going or start a new one?

This would be good. I've found it so useful reading and sharing experiences with others going through the same.

I agree. It has been so helpful hearing from real people who are all going through it. And if I am diagnosed I can feel safe asking questions or just needing reassurance here.

Speaking of questions, I know I've asked a lot lately!! But are night sweats linked to RA? Since my bad flare up night sweats have returned. I'm also experiencing day sweats too, I am dripping from everywhere, my clothes are soaked and need changing lots. My gp is phoning me tomorrow about pain management, if its not a part of RA I'll ask her about it.

Thank you again to everyone who has contributed and shared. It's very much appreciated

One of the most frustrating things is the time when you knwo something is wrong but noone is hearing you. That passed for me once I got a diagnosis and was able to take the Cimzia and honestly I've never felt so grateful in my life. Pain gone and I knew I hadn't been a hypochondriac for the last 12 years. It's only going to get better from here

My MIL got diagnosed in her late 50s. Went from being active, working, driving etc to bed bound within 4 months. 9 years later she is in constant agony, has lost so much weight and is like someone in their 90s. She can manage a walk outside around the streets where she lives once or twice a week but not much else. She is mainly confined to staying at home. Very sad.

I'm awaiting rests of blood tests, xrays and scans atm with a potential AI/arthritis dx.
I'm terrified tbh.
I'm 48 but feel 88.
Wide ranging pain, not just in my joints, achilles tendonitis in both ankles, dry eyes, just feel awful all the time.
Atm my ribs are very sore

Menopause can overlap some of the symptoms and make them worse, so it's worth bearing that in mind.

Oh I'm fully in peri menopause hell and have been for years sadly

Did try hrt but it fave me severe rare migraines
Didn't really help my symptoms either
I kept reading about how hrt "saved my life" but it really didn't do much for me at all

I was diagnosed in mid 20s. Was put on Methotraxate which did absolutely nothing. Then after having DCs it got so bad, I was in so much pain. I was taking Diclofenac as well to manage the pain which made my stomach really sore. Then about 7 years ago I was offered a part in a trial for a new biological drug and honestly the change was incredible. I did so well on it that it was then approved for me as a long term treatment. It's called Benepali and I inject myself once a week. Now I have literally no pain, exercise daily and can't imagine not being on this medication! One of my wrists has reduced movement from when things were bad and that will never get better but still I'm so happy I'm pain-free. The drug is not cheap either so very grateful it's being covered by the NHS 🙏🏻

+1 to say this thread is very helpful, and I am really glad it was posted in AIBU and has received traffic.

Since diagnosis, I've frequently looked at the AI boards and wished those boards were more active. I hope we can keep this one going (although I haven't enjoyed reading the "yes I know x person with it and now they're crippled/bed ridden" without telling us anything about meds tried or anything other than doom and gloom, realize the couple of posters like this must think they are adding something/answering the question in the OP by posting like that, but for me, while I like information I just find this sort of thing depressing/scary/insensitive).

I'm relatively newly diagnosed (4 months ago) with Sjogren's Syndrome and RA. I have two different rheumatologists and the SS one doesn't think I have developed RA yet since they have overlapping symptoms (I've got the symptoms of palindromic arthritis and x-rays of hands/feet/knees show little damage, indistinguishable as of now from osteoporosis-arthritis). He thinks my RA symptoms are actually SS symptoms. However, the RA guy is convinced I do have active RA. Not sure how much of this is due to the "have a hammer, see a nail" sort of mindset.

I have a couple of other AI issues and have always been on the very lucky end of them since diagnosis 15 years ago (primary aldosteronism and lichen sclerosis), means I have high BP and occasionally v. itchy nether regions but otherwise ok!

What was distressing for me with the new diagnoses was that my anti-CCP levels and RF levels were sky high (how did I get to my mid-50's without these being tested before with my symptoms???), which from my reading of the research suggests I'm in a poor prognosis group.

As of now, the Sjogren's (chronically dry eyes and mouth) is the worst everyday thing, and I also have numbness, tingling, nerve pain. For RA, I've had random painful joints for ten years or more (not usually bilateral), but they always return to completely normal within just a couple of days.

And, like the rest of PPs, I've had my share of doctors telling me I'm anxious, it's in my head, I've pulled a muscle, I'm overweight, I've got peri-menopause etc. The SS was what was diagnosed (lip biopsy positive and still numb lip nearly 5 months later!!!) Inflammation levels normal on ESR and only mildly elevated on CRP.

Four months of hydroxychloroquine haven't changed my odd pains and apparently there is no disease modifier for sjogrens, only symptom-treatment, so next up for me is to add either Methotrexate or Leflunomide (Arava) according to RA guy. Or consider adding nothing, if I believe the SS doctor who says I haven't developed RA yet.

Has anyone tried Arava vs. methotrexate along with hydroxychloroquine?

Anyone else got Sjogrens too? Sjogrens guy says Arava better than methotrexate on the basis of one (yes just one) very small scale study in the Netherlands which I've read and which has 29 participants (9 of them control group). WTF is up with medical science in this area? Where is Big Data?

My good thoughts to all of you, and to OP, thank you for posing the question and good luck.

I’m ignoring the bed ridden posts, I don’t think that is very common at all.

Started HRT about 6 weeks ago in the hope it would help with my joints but it hasn’t and I have had a fair few aura migraines now I think about it. I think it has maybe helped with the flushes though. I think maybe with the sweats OP that with perimenopause stress worsens them and when you feel ill as you do stress levels increase so more likely to have them maybe?

We were planning to move out of but I’m now thinking my support system is here and it might not be sensible to move far. I do have one lovely friend where we were planning to go but a lot more here. Originally wanted a big garden but way I feel at the moment I don’t think that is sensible. Any thoughts on this all would be very welcome, I think both places have decent Rheumatology departments. I may not have it I guess but I know nurse and physio friends both concerned and nurse friend did admit she thinks I do.

Bloods tomorrow so once those are done I can go back onto Nurofen which will help. Am thinking I will pay privately for a consultation. I have a DC in year 13 who has been recently diagnosed with what’s probably an autoimmune disease and I need to be well enough to support them.

@Changednamesorry I can totally relate to this. I have had so many 'symptoms' dismissed, or been made to feel like I'm making them up when tests come back negative. So frustrating, I mean, I just shouldn't be getting all these symptoms if I am fine!?! Tbf on the physiotherapist, he did recognise this without me saying anything and apologised because he could see that everyone had been investigating/ treating my symptoms individually rather than standing back to look at the bigger picture. It also felt reassuring that I wasn't going out of my mind because I was reaching a point where I thought all these medical professionals are saying I'm fine, I'm over-thinking normal physiological events (part of my face went numb last year and still is!!!) so they can't all be wrong!

I saw my lovely rheumatologist on Friday. Got knee scanned and injected. Mentioned arm but was told injections not a success so the physio who was present is sending me a list of exercises .
Trying to get a dr to take you seriously can be a problem.

At the moment I am trying to keep as active as possible.

If you can get referred to a physio they have a bit of time and can be the best .
I was on methotrexate for over 12 years off and on and countless other drugs that are no longer available
A jacuzzi bath helps

I have RA. Just turned 35. I was misdiagnosed a few times. I’m a chef so I work with my hands. When my hands started acting up, I was told carpal tunnel, osteoarthritis, trigger finger. Finally landed on RA. My grandmother also had RA. She had hip replacement surgery due to the joint degeneration. Unfortunately her body rejected the replacements, she had to have them removed, and she was confined to a wheelchair thereafter. She also had huge issues with her hands. They became gnarled and she had very little hand strength, grip, or control. But she was always positive and grateful regardless. ❤️ I fear it getting that bad for me, but I try to remind myself that we’ve come a long way since then in terms of treatments. For my, my RA typically acts up in my hands and my jaw. Sometimes my hands lock up. My husband has to sometimes pry them open if I can’t myself and hold them in place until the joints loosen up. There’s also pain, weakness, shakiness, loss of control. I get so angry when my RA medicine is in a child proof bottle and my hands are locked up and acting up and I can’t open the darn thing. My jaw acts up too in the same way. Eating can be difficult. Nothing chewy or tough. Soft things that don’t require a lot of chewing are my friend. If not possible for some reason (dinner out, friend’s party, etc.) it does take me a long time to eat. I’m always the last one done. Some days my RA feels intolerable. Other times I feel fine. I find the weather affects it. Or if I’m feeling sick. Mornings are rough. It takes a while to get me moving and everything is stiff from being in bed all night. Once I get going, things seem to loosen up a bit. I’m currently on methotrexate, which seems to help. Like another poster said, the side effects are horrendous. HORRENDOUS! But I stuck with it and eventually my body adjusted and the side effects dissipated. It was rough because to get the covid vaccine I had to temporarily go off it and I could definitely feel a difference. It wasn’t pretty!

Can I ask of any of you have rib/armpit issues?
It's starting to really worry me:(

RA armpit issues seem to be lymph node related...but it's only 1 side

I was diagnosed at 20, now 60, so pre-methotrexate. I have some joint damage, from before the drugs got good.

My mother also had RA and was in constant pain and housebound for much of my childhood, so you can imagine my dismay at the diagnosis when I was so young.

Her response was 'get up! Get under shower and get going!' It seemed harsh at the time, but was the best advice ever. In looking outwards and getting on with things you are happier than if you focus on how awful everything is. Pain thresholds go up. You can still have babies and they are still joyful. You adapt. Mum used a pair of pliers to turn the kitchen taps on and off. It worked.

I am on hydroxychloroquine, methotrexate and my third biologic (Bariticinib). It's a lot, but I have the sort of normal life that Mum couldn't. Being diagnosed with RA used to be a terrible thing, but not any more. Somewhere along the way the drugs got good. Very good.

That Sjrogrens is a bigger though.

*bugger

Being diagnosed with RA used to be a terrible thing, but not any more. Somewhere along the way the drugs got good. Very good.

This is why I'm glad I posted. I feel much more reassured than I did after reading Dr Google!

Another positive note, Dr phoned yesterday and increased my tramadol to a full month supply on repeat and added diclofenic too! It's a positive because I have battled them over pain medication for over a year!

Glad to hear that you are feeling more positive. I absolutely understand how constant pain can get you down in so many ways, and I hope you get sorted soon.