Trust your Instincts

[Maud-ie]

Ankylosing Spondylitis - so very weary of every pain (chronic back, buttock, leg, hip and knee) being put down to Fibro. Insisted on MRI - got Rheumatalogy appt 8 months later - xrays, blood tests, physical examination - diagnosis Ankylosing Spondylitis and need two hip replacements and one knee. Don't trust the experts if you feel you need further investigation.

[honeybug]

I have this too. You have my deepest empathy Maud-ie.

EJ 🤗♥️🥰🙏🕊🌿🦋🌸

[LoneEra]

Sorry you were misdiagnosed. Definitely good to keep pushing the medics if you feel you’ve been given the wrong diagnosis. What a shame they didn’t do an MRI during your fibro diagnosis process.

Good luck with the AS journey and your operations. As EJ mentioned, it is possible to have AS and fibro (the joys) so please stick around in our community. Also, we all understand what it’s like living in pain - regardless of the cause. Best wishes xx

[Maud-ie in reply to LoneEra]

Thank you. I do appreciate your kindness. Fibro diagnosed in 2014 and Guys Hospital, London just seemed to want to push me off their list as soon as possible. Every trip to GP was put down to fibro. Not like me to make a fuss but my instinct told me that there was more going on. Now waiting to be put on anti-TNF injectable meds as I have a heart condition and cannot take NSAID's. Bizarrely happy that I know that I am not a fraud.

[LoneEra in reply to Maud-ie]

Definitely. You start to doubt yourself. I’ve had anti-TNF injections for my RA. They can be very effective, so I hope they work really well for you. Top tip: leave the injection pen out of the fridge for at least an hour before injecting. This makes it much more comfortable xx

[Hidden]

I have this to, started in my 20’s, it’s very painful, so I feel for you. I have it in neck and spine to, having mri soon, and possible op. Take care.

[Makie-Uppie]

When I was younger Ankylosing Spondylitis was the go to diagnosis for your symptoms and the it was backed up by Xrays. Then along came Fybromyalgia and it seems to have taken it's place as the diagnosis of choice. I wish they would actually examine, gather evidence and then diagnose. Instead of trying for a one size fits all name and trying to shoehorn everything into it because that is quicker and easier.

[Maud-ie in reply to Makie-Uppie]

How very true. I think diagnosing Fibromyalgia gets you off the NHS list quicker and they can forget about you. Once Fibromyalgia diagnosed I was left totally to my own devices for 9 years and it took years to even get that.

[Missspringsummer]

Just wondering, is ankylosis spondylitis is diagnosed with an mri scan or blood tests? My blood tests are negative for any antibodies but I also have been diagnosed with fibro and doctors don’t seem to want to investigate anything further. They’ve not offered me an x ray or scan. My whole spine is affected and my hips and ankles and my lower back especially is so stiff I literally can hardly move. Wondering if it would be worth paying privately for a scan or x ray. Glad you finally got the correct diagnosis. I have the same gut feeling that there is something the doctors are missing.

[Maud-ie in reply to Missspringsummer]

Trust your instincts. My blood tests didn't show the HLA B27 gene but after an MRI scan showed bilateral sacrolilitis and erosions etc and x-rays, blood tests I got the AS diagnosis. My NHS but eminent rheumatologist told me that not everyone has 'the gene' and does not prevent diagnosis. He was actually angry that I had been told that no HLA wotnot meant that AS was impossible. Make a fuss or you will be ignored. Good luck and hugs

[Maud-ie in reply to Missspringsummer]

Ps. I could have written your reply myself reading your symptoms! Ankles, feet, knees, lower back, groin........

[Crossstitch1]

Hi Maud-ie....glad you got a diagnosis...it's so annoying that the minute we are diagnosed with fibromyalgia we have to push to be heard about other symptoms....good luck for the future.

[Maud-ie in reply to Crossstitch1]

Thank you. We are a tough bunch!

[Yassytina FMA UK Volunteer]

Yep I totally agree , and with Covid I think appointments understandably are so behind , and follow up appointments etc, yes trust our instincts and we finally get from A to B as the saying goes.

[Maud-ie in reply to Yassytina]

I hated being assertive when so many people are being delayed life saving appointments. I am glad I was 'though despite my slight guilt

[Debra24]

Hi, I've read your post with great interest.I had a diagnosis of Fibromyalgia in 2014.

Since then and particularly over the past 12 months I have been in pain firstly with my knee and now my lower back.

My knee pain has been put down to the Fibro, had an xray but it was normal.

My back pain I have had for 5 plus years on and off.

But the last 2 months I have been in severe pain that comes and goes, feels tender to touch, on the right side of my lower spine (just up from the coccyx).

The pain radiates into my buttocks, hips and thighs.

Sometimes a sharp pain, other times a dull ache.

Night time is the worst and if I've been on my feet for a few hours.

Hard to get to sleep with the pain and I'm waking numerous times throughout the night.

Taking so many pain killers but nothing is touching it.

Does this sound like AS to you ?

Sorry for jumping on your post but when I read it it sounded so similar to my situation.

[Debra24 in reply to Debra24]

PS I'm sure my late Mother was diagnosed with either AS or Spondylitis in her neck and shoulder blades. Plus she was always in pain and tired, I'm sure that she too must have had Fibromyalgia.

[Maud-ie in reply to Debra24]

I am no expert at all but your symptoms/pain mirror my own. Good luck x

[Debra24 in reply to Maud-ie]

Thank you. You too.