Uncertain diagnosis : I was diagnosed with RA by a... - NRAS

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Uncertain diagnosis

Wildething profile image
14 Replies

I was diagnosed with RA by a rhumatology consultant back in 2015. They put me on all the rhumatology meds and even tried biologics with no success. Now in 2023 a different consultant has stated he doesn't think I have RA but I may have fibromyalgia but he won't commit to this. He has taken me off my RA meds and prescribed Prednisone instead. I told him they weren't working so he just increased the dose. July has been a horrendous month for me. I started to get the pain in my back spreading down both legs to the knee. I couldn't sit comfortably on the settee and the only relief was to sit up in bed. I got my GP out who said it was probably muscular but if I started losing control of my bladder or bowels to phone the ambulance. The next day the pain wasn't as bad in my left side so I thougsht it was getting better but the next day I struggled to stand and each time I moved I would gush with urine. The pain in my right thigh was horrible. Then I couldn't get up out of bed so had no choice but to phone the paramedics. I spent three weeks in hospital. The passing of urine was put down to a urine infection. The pain and incapacity was diagnosed as radiating from my back problem. It took a complete meds change, bed rest then physio to get me walking again. I'm now in a care home until the council can find me a suitable ground floor flat. I'm also walking with a frame. I'd be interested to know what my RA consultant thinks is this still fibromyalgia.

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Wildething
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14 Replies
helixhelix profile image
helixhelix

have they done imaging to identify your back problem? Sounds much more like something mechanical than RA. If they were concerned about loosing control of bladder/bowels then must have suspected a spinal stenosis which can be excruciatingly painful. Which yo7 can have as well as fibromyalgia.

Wildething profile image
Wildething in reply tohelixhelix

They did an MRI but it just showed up some degeneration but nothing else. The pain feels as though it's on my spine.

Deeb1764 profile image
Deeb1764

fibro is painful and all over the body. However many on here are treated by use of pregablin or amitriptyline etc to stop nerve pain. Pred does not do much in my body for the fibro but helps the RA issues.

Article link below is a good one to read

healthline.com/health/rheum....

Wildething profile image
Wildething in reply toDeeb1764

They put me on pregabalin and amytriptiline at the hospital.

Deeb1764 profile image
Deeb1764 in reply toWildething

Pregabalin helps me sleep I find not much does it just takes edge off

Ailsa-NRAS profile image
Ailsa-NRASPartnerNRAS

Hello Wildething

So sorry to hear about your problems. I think the most important thing is that you pursue your GP/consultant to get a definitive diagnosis of what is causing your symptoms which don't sound like typical RA presentation. Then you can get the right treatment to control your symptoms.

Haz58 profile image
Haz58

Have they X rayed your spine?

Wildething profile image
Wildething in reply toHaz58

No just the MRI

Haz58 profile image
Haz58 in reply toWildething

Ok. Only asked as I had a broken vertabrae which was agony but they kept saying it was muscular until 3 weeks later until my Rheumy organised an x-ray.

Wildething profile image
Wildething in reply toHaz58

My rhumy consultant said x rays were no good as they don't show up anything however my mum fell and hurt her back so the GP sent her for an x-ray eventually and found two broken bones in her back. Unfortunately she passed away before getting the results which proved she was right.

Haz58 profile image
Haz58 in reply toWildething

Oh no that's dreadful 😢

Runrig01 profile image
Runrig01

I’m confused as to why if he suspects fibromyalgia that he’s given you steroids. Steroids don’t help fibro as it’s not an inflammatory issue causing it. Meds like pregabalin and amitriptyline work much better. Has your issue around urinating resolved now?, do you have any numbness in the saddle area. Have they looked at the possibility of a spondyloarthritis, which predominantly affect the spine. Are you in the USA as I see you use prednisone as opposed to prednisolone which we use here in the U.K.

I hope you get answers soon, and that they sort you out with a ground floor flat soon.

Wildething profile image
Wildething in reply toRunrig01

The issue with the water works is sorted it was an infection. I'm in the Uk but my phone spelt Prednisone.

Al1954 profile image
Al1954

I also have RA and neurophatic pain after shingles also started with urine i fections.All day in bed feeling miserable.i can understand how you must be.I have tried all kind of meds pred is what keeps me walking at least to the loo.Tried amitriptilin pregabaline etc in me nothin at all.Lets hope one day they can hit the spot!.And hope to be alive stillEach one of us is unic and whats good forone no goid for others.Very difficult to sort out these autoinmune illnesis.Sorry spelling i am from argentina.Aufull country or better aufull hovernors

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