Rheumatoid Athritis - any advice?

[JurassicParkItsAMassivePark]

I’ve just been diagnosed with RA age 35. I’ve been exhausted and drained for months then over the last few weeks my right hand has become increasingly painful. I can’t wear rings on any of my right hand fingers anymore and I have a great lump in the middle of my palm. My hand takes a good couple of hours of rubbing in the morning before I can reliably bend my fingers and I can’t open jars/ bottles with my right hand.

Finally saw a doctor this morning. He’s pretty certain it’s RA - family history, all typical symptoms but said it’s obviously come on quite suddenly. He was going to prescribe me NSAIDs but I’ve had stomach ulcers so not suitable.

He’s referred me to hospital but told me to expect a wait of months. Sent me off telling me to Google it basically.

I’m having a right panic. I don’t know what I’m supposed to do. If my hands continue to get worse at this rate I won’t be able to dress myself within a few weeks. Luckily I’m left handed and it only seems to be affecting me right hand so far.

Any advice? I just do t know what I’m supposed to do. I want to do something - exercises or diet or anything so I feel that I’m doing something but no idea where to start!

Anti inflammatory diet. It helps my father immensely.

I have this. Was diagnosed early this year. You need your GP to do blood tests; it's often diagnosed that way. NSAIDs are normally prescribed for osteoarthritis (I also have that)

Your GP sounds poor. My GP suspected it, blood tests which confirmed it. Referred to consultant and had an appointment (face to face) in 6 weeks (this was peak pandemic). Was given x rays and more blood tests and offered Methotrexate which I decided to try and they are helping. I also have regular blood tests and OT appointments on my hands which are badly affected.

I would definitely recommend going back to your GP. Good luck

I have RA, it's a very complex disease and everyone is different. You will need to consult with a rheumatologist, pre covid this would be done quickly. In my experience GP's do not have much up to date knowledge, although once on the right drugs you can go on shared care. Awful debilitating disease, try and rest and pace yourself. Hope you get seen asap

Sorry, should’ve said doctor did do a blood test.

I’m just a bit shocked that in a matter of a few weeks I’ve pretty much lost use of my right hand and doctor just sent me home to research it myself after telling me not to expect to see anyone for months. He barely even looked at me, I’d just told him that I’m now unable to row (which until a few months ago I did competitively and trained 5 times a week) and that I’d lost a stone in weight meaning that I’m now well into the underweight category according to my BMI. He told me eating less and moving more often helps. It was like he’d assumed I was overweight and sedentary despite being directly in front of him having told him how active I am.

Anti-inflammatory diet looks good. I’ve been feeling a bit sorry for myself the last few weeks and have definitely been eating a lot less healthily than normal which can’t have helped.

I can afford to do a bit privately, I think. I’m sure I could at least afford an initial consultation so I’ll try and hunt someone down. I’ve not heard of a rheumatologist before, hopefully I can find one of those.

Thanks for all the advice. I’m surprised at how terrified I am about the whole thing. littleg69 how are your hands now? Do they get better at all and then worse at other times. I’m hoping so hard that my hands won’t stay as bad as they currently are and I can get back to rowing again. I’m a single parent and don’t know how I’d manage long term if my hand stayed like this/ got worse.

@JurassicParkItsAMassivePark my hands don’t sound as bad as yours. I can pretty much do most things but struggle writing unless it’s a chunky pen. I need to do my exercises more though!

I would see about going private if you can. RA can be very debilitating and it’s important you get started on treatment soon. If you are on FB there are some friendly groups who are happy to share their experiences

I was diagnosed with RA a couple of years ago when I was 40. I really didn't want to take medication and so far have managed to almost completely alleviate the symptoms with an anti-inflammatory diet: no wheat, dairy, red meat, nightshade vegetables, alcohol. Also hugely cut back on sugar.
It's also important to try to eliminate stress from your life as much as you can as it definitely makes the symptoms worse.

I agree about going privately, even if just for the initial diagnoses as the consultant will then be able to write to your GP to recommend what drugs to prescribe and then you can then have routine check ups with a rheumatologist on the NHS. It’s also quite common for autoimmune disorders to overlap so whilst you might have RA, you could also have something else eg Sjogren’s or SLE etc.

What blood tests did you have? I’m assuming positive rheumatoid factor but did you have a positive ANA and do you know the pattern?

I see a specialist hand physiotherapist on the NHS for a similar problem.
While you wait for your Rheumatology appointment to come through it may be worth contacting your hospital physiotherapy department and asking if you can self refer. If not, get back on to your GP and ask for a physio referral which should be possible without seeing you in person again, or GP may just require a phone appointment with you to check your details to add to the referral letter.
Devastating news, I know. I’m 6 months ahead of you.
Also, I’ve booked in on some webinars run by NRAS by registering on it’s awareness week:
nras.org.uk/event/ra-awareness-week-2021/
If you don’t get to see anyone in a short time I’d be happy to communicate privately and pass on my hand exercises plus details of some helpful products.

Also, for what it’s worth, I wouldn’t recommend going Privately just yet. Wait til you see when the appointment is, and wait til you see how long to see hand specialist too. The sooner you can do positive exercises for your hands, take better.

The sooner, the better!

www.versusarthritis.org/ for info - they have a helpline, and info on treatments.

You need to see a Rhuematologist. RA is an auto-immune conditions and there are treatments.

I have RA and sjogrens diagnosed by a rheumatologist after going to see my DR about pain in both arms/hands. Mine hasn’t caused damage yet so the quicker you can get seen the better. I had inflamed areas on my hand and that went as soon as I started meds. I’m in hydroxychloroquine (plaquenil). I have an eye test every 6mths, blood work every 6mths and a checkup every 6mths with my rheumatologist.

Also get checked your B12 levels. Can be related, I have monthly injections. Still very fatigued though.

Hi OP
I’ve just been sorting through my physio exercises and this was what my hand physio started me with:
www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=31603&type=full&servicetype=Inline

We then went on to use ‘hand putty’ available on Amazon (different colours imply different resistance, much like exercise bands) and these are the associated exercises:
www.guysandstthomas.nhs.uk/resources/patient-information/therapies/hand-therapy/therapeutic-putty-exercises.pdf

At least you can make a start with these, they certainly won’t do you any harm.