Rheumatoid Arthritis at 39-GP refuses to help

[Scareofgettingthiswrong]

I have had RA symptoms for the past 6 years. I have been to the GP numerous times. Blood work has been done and I have raised white blood cells and a moderate RA factor.

Over the past two years the symptoms have been getting much worse. I have almost completely lost my pincer grip, particularly in my left hand. I struggle to stand or walk for long periods and cannot do things like tie hair bobbles or do buttons (which is an issue as my 7 year old has hip length hair and wears collared shirts and cardigans to school as per the uniform policy).

I am a single parent to an only child so have no-one to do these things for me. My hands and feet regularly swell and I am always in pain somewhere.

The GP’s have been less than useless. Apparently I am not bad enough for any form of treatment, and the advice to help with my hands was to “use them less”. I am a 39 year old with a rapidly lowering quality of life and a 7 year old to dress and feed! I cannot “use them less”!

The last time I saw a GP about it was 6 months ago, and she refused to re-do the blood-work to see if the RA factor had increased because they had been done 4 years ago.

I am being made to feel like a drug-seeking hypochondriac. I have a fairly high pain tolerance, but even if I didn’t, would that make me less worthy of treatment? I’m too ashamed and embarrassed to make another appointment but I am now struggling to lock the front door etc. Does anyone have any advice?

Not the answer I’m sure you want to hear OP, but can you afford to go private and see a Rheumatologist? I honestly despair with the GP’s/ NHS and sadly your experience is all too common, but you need to have further investigations before it gets any worse.

Can you ask for another GP? It really is hit and miss. A friend of mine just got a lovely lady who has solved 3 long term health issues in 1 visit after nearly 5 years of her suffering needlessly under a male GP who didn't see her pain as real.

I'd switch GP's if you can find another one. RA is so painful. My DS's gf has it and she has got drugs to help and painkillers for when it's bad.

That is actually a really good answer-I hadn’t realised that that was a possibility. I am willing to try anything at all. I will definitely look into going to see a rheumatologist, thank you.

If you really do think you have RA time is of the essence. It is progressive and waiting causes permanent damage.

I’ve got to the point where I am taking cocodamol much more regularly than I would want to, which is concerning me, and whenever I’m not taking that I have to take paracetamol and ibuprofen every 4 hours, so I’m worried about long term health implications if the GP doesn’t take it seriously.

Thank you all so much.

@icanatilldancetowhigfield , this is what I’m concerned about. If my bloods showed an RA factor 4 years ago then surely that is indicative that I have it, so why won’t they treat it?

your need for over the counter pain meds is concerning.
you need to request a referral to rheumatology.
and see a physio for pain reducing exercises.

What you need to do is google who the rheumatologists are in your local Trust. Then, have read as much as you can by googling them individually, look for the ones that are experts in RA AND do private practice.
Only then, choose one and contact their private secretary and tell them you are self funding and would like a consultation.
Make the most of the consultation by taking every bit of paperwork and blood result with you and write a clear history of your symptoms.

A private appointment will cost you between £200 - £300. If you have chosen the Rheumatologist as per the criteria I listed, it is going to be easy for the consultant to refer you to their NHS clinic.

I'm astonished they haven't referred you to rheumatology with those symptoms, especially since there are now disease modifying drugs available. If needed change GP or veg sorrow the cost of a private appointment. So sorry you're not getting the help you deserve 💐

Years ago I worked in a GP practice that prided themselves on having the lowest rate of referrals in the county. Shocking.

I have osteo arthritis and had a hip replacement at 41 on bupa. I doubt anything would have been done in the nhs. The difference it made to my quality of life was staggering. No more Mainlining pain killers.

More recently I’ve had the same in my foot. Nhs said it was wear and tear and nothing could be done. Privately I’ve had a couple of injections and an operation is a possibility.

It is wrong that you have to pay to access treatment which is imho essential.

that's just the consultation.
any extra tests, like blood tests, cost extra.
as the previous blood test is some time away they will likely will want to do a new one. so calculate for at least another 200£ for those.

It is possible though that if the consultant is a local NHS one, OP might get referred based on symptoms and have further tests on NHS. It is worth a try.

What was the actual blood test that you had? If your GP doesn’t think its RA, what do they think is causing your symptoms?

Your GP should have referred you to rheumatology. If there are other GPs at your practice request to see someone else and ask for the referral. Otherwise, if you can afford to do it at this stage, I'd go private for the initial diagnosis so no more time is wasted. 4 years with no proper treatment is shocking. I hope you get some answers and treatment soon.

Does your 7 year old have additional needs? I know obviously it doesn't solve the broader issue of the GP not taking action but a 7 year old should be dressing themselves buttons included, and frankly Id just be encouraging a cute but much shorter hairstyle they can manage themselves!

Can you see a different GP to try and push for action to be taken?

Op could join Benenden Health, it is good for stuff like this but you need to be with them 6 months first. It is £15 a month and would cover up to £2,500 in consultants fees, scans and tests etc

Your GP has let you down badly. You need to press for referral to a rheumatologist as soon as possible - you should not have to go private, although if you have the means, it will probably be quicker. GP's do not have the expertise to treat RA, as my own told me thirty-odd years ago, BUT they can refer you to your local consultant. The damage that is being done to your body is serious. Pester, pester, pester!

It's shocking that you haven't been referred to a rheumatologist. They can do much more targeted and specific testing than GPs and pps are right, there are many treatment options that can delay or stop the damage.

This really isn't about your DD's hair or whether she should be dressing herself. It's about your GP allowing a progressive illness to ravage your body and ruin your quality of life completely unnecessarily.

https://www.nice.org.uk/guidance/ng100

Read this, it covers symptoms and indications for referral. Print and highlight a copy on the bits that match your symptoms for the GP if needed. Insist in blood tests and referral. If they don't then change GP.

I would push to see another GP if you can, even if it means changing practices.

I am a GP, who had RA diagnosed at age 33. I am so sorry you're in this position and you are not being listened to.

You absolutely need repeat bloods (inflammatory markers, repeat Rh factor and anti CCP antibodies if available) and an urgent referral to rheumatology.

Even if bloods are normal, our local rheumatology team advise referral on clinical symptoms and not just results. This is because results are not always very abnormal even when inflammatory arthritis is the cause.

I hope you start to get somewhere with assessment and treatment for your symptoms.

Oh OP poor you. I had a very similar experience with my GP with very similar symptoms. I wrote a complaint to the practice manager and attached NICE guidelines for RA investigation and referral. I was then seen by a different GP, who was deeply unpleasant, they closed ranks massively, but who did make the referral. I now have a wonderful rheumatologist who diagnosed RA and has worked with me to find a drug that works. You shouldn't have to fight so hard to be cared for, but please do keep fighting, and I hope you get what you need. There is hope. I can do buttons and pegs, hold cutlery, hold my kids hands again. Keep going.

I have asked for the name of my 'named GP' in the past and sent them the Nice guidance about something and asked for monitoring, that worked well without the need for a complaint.