Does this sound like ankylosing spondylitis?

[Paddingtonthebear]

Long term back pain, varying from shoulder/neck/lower back. Frequent Headaches. Lower back pain (right down near the bottom) every morning but fades once out of bed and moving around. Pain/sore pressure points radiating around hips and top of buttocks. Tingling /shiver sensation from right hip down side of thigh. Currently being woken up in the early hours every day by a sharp, burning type pain between middle left shoulder blade and spine. No position helps when I wake, I can feel the pain just breathing deeply in and out. It goes within hour/two hours of being out of bed. This pain has replaced the long term morning lower back/bum /hip pain in the last week or so.

Hopeful bump

🙁

I’m not sure op. Have you see a Dr with your symptoms and/or had any scans? AS takes a while to diagnose unfortunately

Hi Op, it’s quite rare and usually presents before age 30. Also more common in men.

Have you restriction in forward bend and side to side bending? You would loose these motions as the spine fuses together (bottom to top as the disease progresses) in AS.

I’d recommend seeing a musculoskeletal specialist (chiropractor, possibly even an osteopath or physio) who would be able to test and X-ray if necessary. Also check with your GP too if concerned.

You are definitely describing many of the hallmarks of AS. How old are you OP? It's less likely to present for the first time in people in the later years of life, but still not unheard of. Do you feel tired? Have you been talking to your GP?

The more common in men thing has been totally debunked. Look at the NASS website op it has loads of good up to date information. They are directly running a campaign to highlight delays in diagnosis and bust some of those myths!

Thanks. I’m 44, had ongoing back/shoulder/neck pain for years, had a scan a few years ago that showed some disc degeneration in my neck. The thigh tingling is quite new. It’s all just got progressively worse really. Seeing osteo again tomorrow, haven’t been since February due to covid. She said last time she thought it was compressed discs, cervicogenic headaches and possibly piriformis. I have called this week and described all the current issues and she wants to do another full assessment due to the new symptom of the pain between my shoulder blade and spine that is waking me up in the morning. She says she may need to write a referral letter to my GP. I came across an article about AS and thought a lot of it sounded similar.

@Covidisdrivingmecrazy that’s interesting, I will definitely take a look at the up-to-date info.

Hi paddington ,

 A lot of those symptoms have been associated with low vitamin D.  .    Have you been checked for that?

 In the UK ,  especially winter and early spring  we can have low levels due to insufficient UVB in  sunlight.  Also  modern western foods  are low in VitD. Especially a vegetarian diet or vegan particularly.( unless artificially fortified). 

Some research on AS strongly points to low levels of VitD being associated with it. 
  Here is one 

academic.oup.com/rheumatology/article/57/suppl_3/key075.401/4971303

A collection of research over the last few years , can be found here.

vitamindwiki.com/Ankylosing+spondylitis+and+low+vitamin+D+%E2%80%93+several+studies

Bearing all that in mind , and your symptoms , I would get my VitD level checked. Either ask your doctor , or get a private test. IF it is low , i.e. below 75 nmol/L I would supplement to raise it.

  There is an NHS lab , that will do tests for patients, but  if not doctor ordered they charge £29. <a class="break-all" href="https://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>

  I have posted quite a bit about Vit D here on Mumsnet ,  

here is a long thread , with many people with similar symptoms, have a look see if you recognise yourself there. I tried to explain why we are very often low , and how we can improve things.

<a class="break-all" href="https://www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed" target="_blank">www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed</a>

Best of luck . Hope that info might prove helpful.
IF you need any more info , just get back .

  BTBH.

Thanks, I haven't had my vitamin levels checked. I’m suspecting there is some sort of arthritic issue too given that I already had signs of disc degeneration several years ago

Sounds similar to my symptoms, I'm being investigated for AS at the moment but not confirmed. There's a blood test to see if you carry a particular gene, have you had that done?

Also when I last saw my consultant he mentioned eczema can be a sign.

My full MRI was it 2016 so as PP mentioned can be a long time to diagnosis and I'm not even there yet!

No I have been mainly fobbed off by GP’s. The last time I went at the start of the year they said it was probably just wear and tear and gave me an amitriptyline prescription which I didn’t bother with and I saw an osteo instead. Due to lockdown I haven’t seen her since February but going back tomorrow

Sorry that should've read my first MRI not full... I'm waiting on the results from my latest one.

If you're having bloods anyway it might be worth mentioning the AS one.

ALSO ... this thread might be helpful .. with regards to Vitamin D.

www.mumsnet.com/Talk/general_health/2377129-Quick-Self-Check-for-Vitamin-D-deficiency

best of luck
BTBH

Osteopath is referring me to GP for blood tests. She is not sure if it’s a mineral deficiency, a mechanical issue , an inflammatory issue or all of the above. She has recommended I start taking magnesium and vit D supplements in the mean time. Have had a terrible cervicogenic headache for 4 days now 👎

Right so I’ve had a full blood count and everything is fine except slightly deficient in Vitamin D, which I’ve already started taking high strength supplements for.

However, I am wondering if I have had the test for inflammatory markers. I think the osteopath said it’s the HLA-B27 test. I can’t see it listed on the blood test results I’ve been sent. I also can’t see if the CRP marker test has been done. Would these things be included in a full blood count or are they separate?

If you can't see it on the results it's unlikely to have been done, might be wrong though. You would have thought that CRP would have been done automatically, but HLA-B27 would have to be requested. Do you mean that she mentioned HLA-B27 before the tests or after?

I have pages of results but I cannot see CRP. It was my osteopath who mentioned the HLA-B27 test, she said she was going to request it when she wrote to GP to recommend blood tests

Unlikely to have been done then. That's frustrating. I have AS without the gene, which is quite common.

Hmm not really sure what I’m supposed to do now

My bloods are absolutely fine regarding this condition. I'd push for a pelvic and spinal MRI. I was finally diagnosed this way after pushing for ages and being fobbed off by GPs and physios.

Thank you!

I have AS, started off slowly and built up over time. Also referred to GP by my Osteo. Looking back I'd had a niggling pain for years in lower back. But in end it was all my joints that were sore knees/shoulders/hips. What you describe sounds v similar.

Had blood tests at GP and then referred to Rheumatologist, he did the gene test which was neg, and an mri not GP.

He tried me on steroids and sulphasalazine which worked and have been totally pain free for 2 years. Still taking them now (slowly coming off steroids). If it hadn't worked there were various other more expensive options to try.

Good luck, push for the referral if you can. I regret being as stoical about it for so long.

Hi there, i apologise for hijacking but I wondered if anyone could tell me about their symptoms as I wonder if I have this. I've had tender ribs down either side for a while and this morning I happened to feel my bones underneath right breast and was in agony. I have intermittent chest pain on that side also. In addition I have achy bones and joints daily. Many thanks.

Dd has this diagnosed when she was early twenties. She had hip pain for a while and GP prescribed NSAIDs that didn't really help much. Then she started with alopecia areata and iritis. It was the combination of all three that prompted a referral to a rheumatologist and eventual diagnosis. Painkillers were adjusted and altered, she takes a combination of naproxen, dihydrocodeine and morphine now. She was prescribed immunosuppressants but had a dreadful allergic reaction to them. She is 27 now and has reduced sensation in her lower legs and feet.