Help?

[Furmummy]

Firstly my mum has RA and I know it can be genetic.

My story, in June 2018 I started going to my GP, trying to understand why I was constantly exhausted and very emotional. I was diagnosed with anxiety and giving antidepressants.

I went back to my GP as I didn't feel better and I got blood tests for thyroid and anaemia and the usual tests. All came back that I was fine. But I wasn't I could barely get out of bed on my worse days.

Eventually after various tests including test for RA gp diagnosed in a flippant way Fibromyalgia as I told him I was in a lot of pain in my wrist. So along with that and my other symptoms, chronic fatigue, brain fog, cognitive issues, ibs etc and fine blood tests he diagnosed the fibro.

That was 2019, since then I have had painful lumps at base of left thumb, pinky. Pain at base of right middle finger. Pain in left elbow both shoulders. I get pain in what feels like my pelvic joint, I have chronic back pain at the base of my spine.

I've had xrays on hand and pelvis and they came back fine.

I have my medical history and from about age of 19 I've attended gp for various joint pains.

Is it possible that I have RA and not Fibromyalgia?

How do i get the gp to refer me to a rheumatologist?

[Hidden]

My bloods are always good so inflammation rarely shows. I was told for years I was depressed before diagnosis.Only a rheumatologist can diagnose RA . I would push for a referral as there is a family history. Even if you haven’t got it’s one step closer to a getting some form of diagnosis .

[Niao]

Definitely agree with J1707! I have both and Fibromyalgia is never ending in its varied symptoms. Fatigue, severe, is a biggy but as so with RA. I've had pains everywhere imaginable with fibro but again, pretty much too with RA, but any lumps/nodules I have seem to be RA.

RA especially affects my hands, fingers,wrists elbows, shoulders, knees, ankles and feet/toes.

Also you could have Osteoarthritis, as I do.

As for X-rays, the x-ray I had of my knee, just prior to being diagnosed with RA, showed nothing remarkable. 3 weeks later an MRI showed it to be severely damaged!

A Rheumatologist is the one to see for sure.

[Mmrr]

Unfortunately your story is not unusual, antidepressants regularly being offered when a somatic disorder is not obvious. I had a similar experience myself. Have you asked your GP directly if you could have seronegative RA ?

And if you could be referred to rheumatology ?

If not , why not ?

It might be useful to remind the GP that your mum has RA.

If possible it can help to take someone with you to your appointment. I always take notes too and have consistently found note taking and having someone with me gives better results.

Also don't be afraid to challenge and ask for clarity..."are you saying....", "could you repeat what you just said please..."

Try a different GP too ( I stuck with the same one, thinking continuity would be good, big mistake).

[Amy_Lee]

Agree with Mmrr, tell your GP that your mom has RA and you want to be regretted to see a rheumy.

I am a sero negative, my blood work said normal. However, I might be lucky that RA hit me very hard so my rheumy started the treatment immediately for me. I was on medically leave for a week where I could only lying down on my coach. Steroid and painkillers didn’t seem to work at all.

So just ask to be referred to a rheumy immediately!

[Monkeysmum]

Hi Furmummy (your fur baby looks very cute by the way!). Like the others above I am sero negative and my bloods showed no obvious sign of RD, and diagnosis was a long process in which my Gp was no help at all. I wish I had been aware of the NICE guidelines for referral to rheumatology and I suggest that you look these up on the Internet. I don’t know how to post a link to them unfortunately but if you search for NICE guidelines for Rheumatoid Arthritis you can find them. Here is a copy and paste of the most relevant bit:

Referral from primary care

1.1.1 Refer 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]

What eventually made the difference for me was that, at the suggestion of a foot and ankle specialist I was seeing, I paid for a private appointment with a rheumatologist (about £200). He diagnosed me and then put me on his list as an NHS patient going forward. Not how it should be done really, and my starting point would be to discuss the NICE guidelines with your Gp first. Also if you have any obvious swellings make sure you take photos of these as you can bet that by the time you get a face to face appointment they will have disappeared! The NRAS helpline can also provide excellent advice on how to navigate the diagnosis phase. Good luck xx

[Furmummy in reply to Monkeysmum]

Thank you for your reply. My furbaby is my guaridain angel I think never leaves my side. X

[AgedCrone]

Just tell him enough is enough ....you need an immediate referral.However....I probably won’t be immediate ....as rheumatologists are very thin on the ground and very overbooked....& the present Covid situation is making even urgent appointments very difficult to get.

However....If you can manage it ...... after having had all your blood tests...you could choose to have a private consultation to set your mind at rest.

[Furmummy]

Thank you everyone for your advice.

It has really helped.

I will definitely look up the NICE guidelines.

🤗 Xx