Does this sound like ankylosing spondylitis?

[thefirstmrsdewinter]

I posted in Jan about back pain and got lots of helpful replies and suggestions, many of which I tried. It has got progressively worse. I sleep well for about four hours and then I wake repeatedly for the rest of the night with pain (left lumbar and/or left hip) which is relieved by moving. When I had that virus that was going around earlier this year I was in tears with the pain of coughing in the night, which felt like being stabbed in the spine from the inside. I first complained about left hip pain and stiffness when I was about 25 (I'm 51) but bloods were normal. For years it's been a bit stiff after sitting (long car journeys etc) but never disruptive like it is now.

My gp has referred me to an NHS physio (I was seeing a private physio before that) but so far no improvement. Apparently I have normal inflammation markers, though I had raised platelets in one test (normal in next). No pain relief or NSAIDs seem to help. Gp prescribed tramadol which didn't touch it.

Afaik there is no Crohn's or RA in my family, but I do have some common autoimmune issues (lichen planus, Hashimoto's, psoriasis), and my dad and his mother had chronic lower back problems. My gran told me she had a 'degenerative bone disease' when I was little but I saw little of that side of my family for years so that's all I know.

I did a little reading today and I see AS is also associated with genital lesions, which was the symptom that eventually led to the diagnosis of lichen planus.

What next? Should I press for a referral to a rheumatologist, even without inflammation markers? Or should I ask for an mri? Or x-ray?

I think a trip back to GP for repeat bloods and to discuss referral would be appropriate. You wouldn’t be able to diagnose AS without imaging but if nothing has helped so far (assuming you’ve been diligent with prescribed exercises??) then it sounds less like simple musculoskeletal pain

Thanks. I do two or three Pilates classes a week and yes, I do the physio exercises. Physio has just added three to the six or seven I already do. Pilates helped my more general periodical back niggles (the usual middle-age stuff) and then this started.

They just did repeat bloods to see if the platelets had returned to normal (which they had).

I’d ask your GP to do a blood test to check for the HLA-B27 gene. If you’re positive for this it could point towards Ankylosing Spondylitis. 2 of my brothers were diagnosed with AS and I have suffered with sacro-iliac and lower back pain for years. One of my brothers suggested that I ask for a blood test for HLA-B27 as this was something they tested for to help confirm his AS. I came back positive and therefore was referred on for MRI scans/rheumatology appointments - they can see early signs of AS for myself but not as bad as my brothers, however at least I now have an idea what the pain is and will be able to get the correct help if it deteriorates further.

Could it be Psoriatic Arthritis?

I agree with LadyLannister about the HLA-B27 test, but also I would get the ANA test and also ESR and CRP tests - sometimes they just check your ESR rather than doing the CRP. But in my experience, CRP results reflect better often how you are feeling.

If you have Psoriasis - PSA is a real possibility and that can manifest in any joint - I have it in my sacroiliac joint - but it goes into remission, sometimes it makes me immobile sometimes I can run 5K without issue. There are loads of wonderful drugs on the market now for PSA and therefore I would push for a Rheumatology referral.

I agree with everyone above. My husband has AS, and was fobbed off by the GP as ‘non-specific back pain’ for years. Eventually he mentioned AS to the GP and got a referral and after subsequent imaging/HLA-b testing got a diagnosis. So whilst GPs hate people brandishing “I read this on the internet”, I think there are times it is valid. His early symptoms sound similar to yours.

Good luck, if it is AS it made my husband’s life miserable. He was started on anti-tnf therapy and it was literally life changing within a few weeks.

Have you seen the NASS website: nass.co.uk

Thanks all. After I posted this I did worry it might sound like I'm shopping for an internet diagnosis. Arthritis has been suggested by both the gp and physio but it's still early days. I was reading an old post here and someone mentioned AS and had symptoms that sounded very similar to my own.

How2 yes I agree, I'd like to avoid 'I read this on the internet'! Due to past experiences I don't have a lot of confidence in my surgery and I avoid contact as much as possible but feel like if I don't begin to steer the conversation with my gp (in the sense of self-advocacy rather than self-diagnosis) I may never get any relief. Eight months of interrupted sleep (plus perimenopausal symptoms) is making me feel very low. I'm glad your husband is feeling better, it's great that there are effective treatments.

MindYour thanks for the guidance on the tests. They're doing tests now without telling me what they're for or telling me the results, so I need to get on top of that and find out what's been done already.

Eight months of interrupted sleep (plus perimenopausal symptoms) is making me feel very low.

Yes, I think the interrupted sleep and soul destroying fatigue got to DH more than the pain in many ways.

Could you discuss the possibility of an autoummune condition with your physio, perhaps they could get on board with convincing the GP to do a referral?

Keep us updated.

Physio keeps asking if anyone in my family has 'an inflammatory condition like Crohn's or RA' (no) but it wasn't until later that the penny dropped and I realised I should have mentioned my own autoimmune diagnoses. (She is quite austere and box-ticking and implies that I talk too much instead of answering each question precisely so I'm trying to be more focussed with her.) My thyroid ABs are always off the charts but maybe that's not relevant - ?

I'm sure I could get the gp onboard with a referral, it's just that I want to go in the right direction as much as possible. Gp has said she would refer to an orthopaedist, I guess because whatever inflammation tests they've done have been normal - ? I think my plan will be to ask what tests have been done, see if they'll do the full complement suggested upthread (in light of my AI issues) and ask if gp can explain about ortho vs rheumatology referral.

Re pain, it's intense enough to wake me from a sound sleep but it levels out quickly once I move about. It is definitely the patchy sleep and frustration of waking over and over that is the most wearing. I understand people often struggle to get pain relief prescribed so maybe I should feel lucky but I thought the tramadol scrip was a bit . The problem is that nothing will last through the first four hours of sleep, and before that I have no pain, so I'm medicating pain that isn't there while failing to prevent pain four hours later.

Thank you btw, it's good to find a sympathetic ear. :)

Hello, my husband eventually got diagnosed with AS after an X ray in rheumatology. Private physio had suspected AS and wrote to our GP. He doesn't have whatever the genetic markers are but the X ray showed the typical AS damage. GP hadn't previously been interested. His symptoms sound v similar to yours and he was in his 40s at the time.