Axial Spondyloarthritis

[FibroLee]

Good morning, Hope everyone is as well as can be.

Since about April my pain has increased tenfold especially in my lower back. At first I thought I was just having a flare but the pain in my lower back just got worse and worse and became permanent as the pain in my left foot.

My doctor gave me an appointment to see the musculoskeletal specialist at my GP and he tried fobbing me off but I refused to leave without a referral for an MRI (which I got).

I have just had the review of my results and they are suggestive of Axial Spondyloarthritis but need more test to confirm and rule out anything else.

The musculoskeletal specialist said that rheumatologist are having this autoimmune disease more in the forefront of their heads when diagnosising people as its being missed a lot.

I guess I'm wondering if anyone else that was diagnosed with Fibromyalgia has also been diagnosed with Axial Spondyloarthritis?

Sorry for the long post lol

[Yassytina FMA UK Volunteer]

Thankyou for the post, I am glad you pushed and got seen for the MRI, it just shows sometimes we have too do this , take care x

[FibroLee in reply to Yassytina]

It also shows that we know our own bodies xx

[Jontie]

I'm in a similar position to you. I'm 59 and was diagnosed with pmr in 2017 after symptoms of severe aching in various parts of my body but particularly hips and neck. For the last 7 years I've been on prednisolone which has kept the aching more or less under control. You are supposed to gradually reduce pred and the pmr normally goes after about 2 years. In my case the neck pain never really went. I finally had an mri of my spine in early December and I've now been told I have spondyloarthritis and that I've probably had that since 2017 rather than Pmr. Apparently the spondyloarthritis was probably there but not visible when I had my first mri in 2017. I'm now awaiting an appointment with rheumatologist to discuss treatment options, although, from what I've read, there's not a lot that can be done.

[FibroLee in reply to Jontie]

Hey, hope you're well. I paid to have my mri and reports looked at privately with a rheumatologist as my local hospital has a 13 week wait with no available appointment dates 🙃

He was able to give me a formal diagnosis of Axial spondyloarthritis and gave me a small plan to follow until I can be seen by him on the NHS. He was very kind and honest in telling me that to treat this condition privately would cost way too much and that he runs specialist clinics in 2 hospitals that he wants my gp to refer me to so I can be seen and supported there.

I'm very grateful that I had the opportunity to go private as it beats the long wait without answers and a plan.

I'm still sad that this is my reality but a but more hopeful.

[Lilacjamdog in reply to FibroLee]

Hi, glad you were able to get a diagnosis. This might be a stupid question but how do you go about finding a good rheumatologist and get a private referral? Getting desperate enough now to pay for someone to listen.

Thank you!

[FibroLee in reply to Lilacjamdog]

Hi, so I became very desperate and began goggling and I came across a rheumatologist that I had seen before on the NHS. I dug deeper to find out that he was one of the top rheumatologist and found out where he practiced and just booked a private appokntment.

Are you in London?

[Jontie]

What sort of plan did he give you Lee?

[FibroLee in reply to Jontie]

Nothing major... Go back on my etoricoxib

Swim or do pilates and stretches

Are you in London? He has a specialist clinic at both Edgware hospital and Barnet hospital. He told me to tell my GP to only refer me to one of those hospitals. Also he has an Axial SpA mobile app - MySpA

[FibroLee in reply to FibroLee]

I'm sure he said more but brain fog gets the better of me, when I remember I'll let you know lol

[Jontie in reply to FibroLee]

Thanks for that Lee. Not in London so I'll so I'll have to see what they have to offer here in Somerset.