Tell me about your arthritis?

[leithreas]

I'm 36 and I have had sore joints for probably about 6 months now. Previous to this I have had no illness, been fit and healthy, exercise every day, eat healthily, am a healthy weight. I have had multiple blood tests and nothing is showing up. The pain is mainly in my hips and hands but my knees are starting to act up now too with the occasional ankle pain to just to mix things up. I am taking naproxen twice a day along with co-codamol but am still really stiff and sore. Getting to sleep is a nightmare, I can't get comfortable, I'm cranky and tired from lack of sleep and being in pain and feeling at my wits end tbh.

My gp says he thinks it might be arthritis but it can take a while to show up on blood tests or xrays? I had xrays of my hands and my hips taken today and will get the results next week but I'm worried that if nothing shows up then what? I have been referred to the rheumatology clinic but apparently, the waiting list is 2 years long and I suppose I'm wondering wtf happens in the meantime? Did your arthritis show on an xray or in blood tests? How did it start for you, was it sudden? How is it being treated? Are you still in pain a lot or can you have arthritis and be pain free?

Sorry for the long post I think I just need some kind of reassurance maybe? I'm so tired of being in pain and the loss of function in my hands is really getting me down.

I had a lot of pain in hands to the point I couldn’t open doors in our house or pour the kettle. X-ray confirmed it was osteo arthritis. Does your Gp think you might have the rheumatoid sort? I found the exercises on versus arthritis helped and I started taking glucosamine. My mum said hers flared up before menopause and I seemed to have had a bad phase and now it has settled down, just a bit twingey. I know it will come back in later life (48 now) and my fingers are already starting to get nasty nobbles but pain has subsided. Gp was no help, just said ‘oh well, you’ll have good days and bad. bye.’ !!!

Thanks for your reply, it sounds like your GP is fat lot of good. Yes he thinks rheumatoid, apparently I'm young for osteo? I will check out versus arthritis, like you say trouble with doing really basic tasks with my hands is the worst. It's good to know that both your pain and your mums pain has settled down. I'm working myself up thinking that this is it now, I'm always going to be sore.

Hi leithreas.

I'm a similar age, diagnosed last year with rheumatoid arthritis. I first went to GP in 2020 with finger/wrist/elbow pain and was dismissed as bloods normal. 6 months later I had pain in almost all joints. Even jaw and neck. My elbow had become fixed into one position but still bloods were normal. They recommended physio... Saw him for 3 months with no resolution and eventually I pushed for more bloods as by this point I could barely walk/shower/get dressed/lift my children.

This time I had raised inflammatory markers. So I was finally referred urgently to rheumatology.

Have a look at the NICE guidance. I quoted this and it enabled an urgent referral.

"1.1.1Refer for specialist opinion any adult with suspected persistent synovitis of undetermined cause. Refer urgently (even with a normal acute-phase response, negative anti-cyclic citrullinated peptide [CCP] antibodies or rheumatoid factor) if any of the following apply:

the small joints of the hands or feet are affected
more than one joint is affected
there has been a delay of 3 months or longer between onset of symptoms and seeking medical advice. [2009, amended 2018]"

It's really important to get treatment early to slow the progression of the disease and from what you've described you should be referred urgently.
Hope that helps!

My basal thumb arthritis didn't show in bloods or xray. I got lucky and my referral was to a very experienced surgeon who said it doesn't always show but I had the symptoms so he'd treat it as if it was arthritis. Had cortisone injections which helped for a while as well as hand specialist OT treatment then trapeziectomy op on left hand July 2021 and right hand March 2022. Absolute game changer. Still gets a bit achey if I do too much but no longer painful. I was 40 this year.

Yours sounds really bloody painful OP, could you get a private referral to rheumatology to speed things up??

Yours sounds really bloody painful OP, could you get a private referral to rheumatology to speed things up??

Keep pushing OP. I’m 49 and I’ve had an auto immune inflammatory arthritis for 8 years now. My bloods were normal for about a year despite daily pain that became crippling. When it peaked I couldn’t even turn over in bed never mind get out of bed. I was taking Naproxen too. I was fobbed off even by the rheumatologist until my bloods went crazy and then they seemed to pay attention. I’m now on daily Sulfasalazine, a weekly injection of Methotrexate and a monthly IV infusion of Toculizumab. I still have daily pain but I can function, get up, go to work, look after the kids etc. It can take some time to get a diagnosis. Good luck.

Dh had to go private to get diagnosed after getting repeatedly fobbed off by the GP but since diagnoses he’s had really good NHS treatment…under the same consultant he saw as a private patient.

I was lucky that my area runs an early arthritis clinic that I googled and asked for. I’d had bloods done and X-rays which were all fine with the GP but obviously was still suffering so asked for this clinic - very short wait. Was put onto methotrexate and steroids straight away and now also on a biologic. Never had anything show on X-rays or scans or bloods but good rheumatologist know it doesn’t always show on these. I have psoriatic arthritis.

I second getting seen privately

Thanks so much to you all for sharing your experiences. I really appreciate it. It's good(not quite sure that's the right word) to know that lots of you have experienced nothing showing up in blood tests. I have to admit I was starting to feel like a bit of. faker with repeated blood tests showing nothing. I'm not very hopeful that my xrays will show anything either tbh. It seems from you that persistence seems to be key. If my xrays come back showing nothing I will check out private appointments and see what the deal is. Thanks again, I really appreciate it.