Rheumatoid arthritis

[AnyaMarx]

Anyone any words of wisdom .

I'm 51 . Always been fit , active and healthy .

For a year I've been debilitated by flare ups of swollen joints and excruciating pain, started with one knee , now it's one knee and both ankles .

It
Literally feels like someone has taken a hammer to
Both ankles and I'm now presently unable to get
Up or
Down stairs, driving is problematic, and rest does help but then the minute I try and become active again , I'm talking a dog walk - I'm crippled
Again.

Has anyone any advice please? I've gained weight . I'm fed up . I'm currently off sick from work again because the latest flair up has affected both ankles plus my knee .

I'm so fed
Up . I'm waiting for
An MRI on my knee and X-rays to
Come back on ankles as the ankles only started 2 weeks ago but I can't get up or downstairs without being on my backside .

Get seen by a consultant, get a diagnosis (if you haven't already), a course of steroids and disease modifying drugs. Chase your referral(s) like crazy - pester the GP, call the rheumatologist's secretary, say you need to be seen urgently, cannot perform day to day activities, severely affecting your mental health. Good luck please feel free to message me I went through this all at 23.

Well I saw the most condescending twat of a doctor today who refused to refer me . Apparently if I haven't got it in my fingers or toes I can't have it . He said he wouldn't have even sent me for an X-ray .
I have a deformed big toe - like a bunion but it's never bothered me because I wear flat shoes or boots , it's my ankles and knee that are killing me .

I've booked in with another doctor next week .
I said it literally says XYZ on the NHS own website ! He completely contradicted the nhs own website.

I've got the swelling and pain
Symmetry
Stiffness
Immobile
Night sweats
Fatigue
New asthma which I've never had
Been to gp a few months ago with chest pains
Had pneumonia
And a deformed big toe

And he just dismissed everything I said told me he wasn't arguing and he wasn't referring me to a rheumatologist because he didn't think I had it
He was a locum never seen him before and clearly he didn't read my notes . Dismissed me with a wave of the hand .

Oh that's awful I am so sorry! When mine started it was literally just my ankles! Even now (13 years later) my fingers and toes are barely impacted although most of my big joints have got themselves involved over the years.
I am so angry they dismissed you! I know there are various rules these days about not referring on first ask so definitely go back- they should basically refer you to musculo skeletal who should assess you and probably send to rheumatology. They should be checking various inflammatory factors in your blood. My arthritis was initially seronegative (so no "rheumatoid factor") and has at points been diagnosed as "psoriatic arthritis" despite me not having psoriasis but the big joint pattern is more common with psoriatic. Very old fashioned to just think of fingers and hands for RA (As a medical professional!) Good luck! In the meantime whatever painkillers you can get your hands on but ibuprofen and paracetamol together can be pretty decent and ice on the sore bits- feet in and out of iced water should reduce the swelling.

Thanks jade

I rang back and I've got a phone call with the nurse practitioner next week who is really nice and listens !

This is impacting not only my quality of life , mobility but also my job . I feel like I've gone from a fit and active person to a little old lady in the space of a year .

I've just driven 5 mins to the shops literall got a basket of shopping and back and now I can't walk ! I'm laid on the bed .
That doctor was so rude and dismissive. I'm waiting for an MRI on my knee anyway and am under CATS at the hospital so I'm hoping the nurse practitioner will help me more . I can't be left like this - at first I was joking about getting old but now I can't even get out of a car .

Hello @AnyaMarx , sorry to hear you are suffering so much. I can relate with your pain. Last spring I had terrible hip pain after an extended overseas trip with tons of walking and luggage carrying. I was in such pain I thought it was over for me! I could only lie on the floor for relief!
While you are waiting for your next doctor's appointment what you need is anti-inflammatory medication rather than pain medication. I found taking 1gram of Advil 3× a day , plus omeprazol, to protect your stomach, helped me immensely! I know people shouldn't give medical advice but this is what the doctor in my family recommended while waiting for a proper diagnosis. I hope this helps. My hip pain disappeared miraculously after 3 months. So don't lose hope!

Thank you
The pain does go but then flares up again without warning , can be weeks , can be months .

Can we get Advil in the uk ? Is it just ibuprofen ?

I have naproxen which I thought was an anti inflammatory? It it does cause me stomach issues .....

Naproxen is my fave anti inflammatory but should be taken with a PPI like lansoprazole/omeprazole. But you should definitely have investigations and if it is inflammatory arthritis there are medications that can control it rather than just lessen the symptoms like painkillers. They should be saying "pain isn't normal we need to get to the bottom of this" not dismissing anything!!

I'm so sorry your doctor was such a dismissive nob head. No doubt if he was the one in pain it would be a different matter. You need to get a blood test for a diagnosis - I have just been diagnosed with RA and it was the blood test that confirmed it. I feel your pain - I am having a horrific day with the pain too, it's awful, I'm so sorry. I've just taken my third dose of methotrexate and no improvement whatsoever yet. It took 8 months to get diagnosed and I had to go through Benenden for that - I couldn't get an appointment with an nhs rheumatology consultant for 10 months. If you can see a different doctor and get a referral, if your wait time is really long go with Benenden or similar if you can to speed things along.

Your doctor sounds awful. You definitely should be seen by a rheumatologist. It can start in big joints (mine was my shoulder) and I had it for ages before it should in my hands. And even then it wasn't bad until I had a major flare up.
Got to a private GP if you have to and get a referral. Advice is to get the appointment within 6 weeks if possible to minimise joint damage.

There are a number of blood tests, rheumatoid factor is one. Anti CCP is the other. Along the ESR and CRP both of which show inflammation levels. The correlation between ESR and CRP and pain/swelling varies for different people. Mine tend to be low even when I could hardly walk.

And you should definitely be getting a steroid injection in the meantime.

I e seen another gp and spent 40 mins but again he says the guidance is that for it to be RA it has to start in the small joints of the fingers . So he wont refer me . He says it's always small joints with RA and it's my big joints affected.

I've hardly been able to walk today . My ankles are swollen .

My X-rays showed nothing.

Today I've been for a blood test and a chest X-ray. He's doing a thorough blood test, also looking for cancer markers, given my steroid tablets and inhalers for my
Chest as I'm constantly wheezing.

I don't know what else to do . That's 2 doctors refused to refer me saying it cannot be RA if small joints are not affected.

He says it's always small joints with RA and it's my big joints affected.

He is absolutely wrong here. I was diagnosed in 2017 and my pain started in my shoulders, knees and balls of my feet. Kept being told I had tendonitis, which in the end I told the GP was a load of rubbish and basically demanded a blood test or I would put in an official complaint. Blood test came back with Rheumatoid Factor through the roof.

He referred me to a Rheumatologist who I saw privately for the first consultation, so I could jump the 3 month waiting list. All confirmed in the consultation with medication prescribed and I then flipped back to seeing him through NHS.

Threaten the GP with a formal complaint, some times it's the only way.

My sore fingers are crossed for you. 🤞

Bollocks to small joints! I was diagnosed with RA at 18. Started in my left elbow (stiffness) and then invaded my ankle. This was the days before methotrexate etc but I was diagnosed quickly. It took a few years to get it under control with steroids and other things and in that time it ruined my ankle and elbow. Very fortunately for me it progressed no further and, other than some stiffness when tired or overindulged, it causes me no problems if I take naproxen daily. But I still struggle to run on my ankle and my elbow won’t straighten.
Moral of the story is to get it diagnosed and treated quickly.

Your other symptoms sound as if it could be something different. Make sure that the blood tests cover rheumatoid factor.

Hopefully the steroid tablets as well as helping your chest will bring down overall inflammation and help the joint pain.
Yes absolute bollocks that small joints have to be affected for referral, here are the nice guidelines
https://www.nice.org.uk/guidance/ng100/chapter/Recommendations

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.

I would say you fall into 2nd and 3rd categories there and should therefore be referred urgently.

Hopefully the blood tests will tell them something!

Also x rays are unlikely to show much but ultrasound or mri should show inflammation.

I’m crippled with it on a bad day I’m lucky if I do 1000 steps. Cooking is everything has to be chopped prepared. The pain is dreadful some days I’ve had to take it easy all week to enjoy today. I can still get about but no long walks now it’s too much for my body the next day or so. I feel your pain I’m 57 soon. I fear for my future on bad days not mentally but physically.

I'm caught in a serious flare at the moment, that's lasted 5 weeks so far. Codeine isn't touching it. It will ease at some point. My meds just aren't dong a thing at the minute.

Worst bit so far is, it's gone into my right jaw joint and can't open my mouth enough to take a mouthful of food. Fortunately I can still drink 😁

Hello op! You are my ‘poorly twin’

I have an appointment with the rheumatologist in a couple of weeks but if I hadn’t cajoled/begged/argued with my GP I would still be bed ridden contemplating ending it all ( yes it’s been that bad)

i had flu over Christmas- took me 5 weeks to recover. At the end of January I did some light work on my allotment ( first weekend I felt well - it was wonderful). Three days later I woke up unable to move. I was in pain from my ribs down to my ankles.
i have hurt my back before but this was different. But I put it down to a pulled back. I did my usual things and the upper body improved. Except my knees. They swelled up so badly I struggled to get trousers on.

ha ha - getting dressed! By this time I am now unable to dress myself etc. My husband has become my carer. I can hardly wipe my arse. He has to put me to bed with a sandwich and a flask before he goes on his Night Shift.

it wasn’t just my knees, my whole legs hurt.

and my left thumb - swollen and painful- I can’t pull my knickers up!

gp put it down to ‘pulled or strained knees’

I argue it’s lasting too long and getting worse.

she reluctantly does some bloods

then all hell let’s loose

platelets, CRP and ESR are sky high
gamma gt is raised
so is my blood calcium levels

and

my ANA is raised!

i advised she needed to talk to a rheumatologist- which she did.

The rheumatologist hasn’t met me but says i have inflammatory arthritis which is probably lupus. And I have since had a depo medrone injection in my bum to keep me going.

it’s been a long hard slog getting something done.

i joined a lupus group on Facebook and a PMR group ( PMR was my first thought this could be)

autoimmune diseases go through my family like Blackpool goes through sticks of rock. Both of my daughters have at least one, my grandma, aunt and mum all had autoimmune diseases and so didn’t great grandma.
i have suspected I had some form as I have lots of funny rashes and reactions. I also have a funny facial rash which looks like the lupus rash.

sorry for long post

I just wanted you to know you are not alone. It’s a fucking hard journey

And I am a fittish 55 yr old with a reasonably physical job ( I teach first aid/ defib/ cpr) and I can’t put my socks on never mind get down with a resuscitation doll.

i have lost my lively hood

I walk with a stick now ( I was on crutches but I have improved a bit)

again much love being sent ( dm me if you want someone to cry on)

Thanks everyone the doctors here are making me feel like I'm going mad . I'm certain in my heart of hearts in RA yet they dismiss me .

Jade thank you so much for the nice guidance- yes I fit 2/3 .

I'll await the bloods back , then go raise merry hell .

I'd tried to go into a shop yesterday with stairs - got half way up and went down again - it's too painful and I'm too slow .

The nhs website says RA can affect lungs which would fit with this sudden onset asthma.

I just cannot seem to get a referral .

This would explain the coughing and wheezing

This is horrific for you it really is.

I've got a friend to print off the NICE guide lines and the nhs info .

I'm going to go back to go and present them to him and ask why he refuses to refer me based on them .

I'm going to ask them to be put inmy notes so when i complain there is evidence that I asked for referall based on the NICE guidelines.