Anyone with ankylosing spondylytis ?

Dechi

Dechi

Senior Member (Voting Rights)
I have fibro on top of ME and some type of fibro pain. I also have pelvis lower back pain that started about 8-10 years ago, before ME. The pain happens during my sleep, very early morning, around 4-5 am. At the beginning it wasn’t too bad but now it is bad enough to wake me up. It comes and goes, it’s not everyday (thank god).

It’s a weird pain, different from any other I have, which makes me think it’s not fibro pain. When I wake up, it really hurts and if I change position, it will hurt a lot more while I do it but afterwards, it will hurt less. So I take a few seconds to find my courage and turn. Then the pain lingers for about 45 minutes. Yesterday I had to get up, the pain was too much to fall back asleep. This is the first time it’s so bad.

I have an appointment with a rhumatologist but I’d like to know tour experience with this illness if you have it.
 
@Dechi I looked into it last year because of my 'burning' spine, long term on-and-off pelvis pain and inflammation, etc. I tested negatively for HLA-B27 that 90% of AS patients supposedly test positive for. Considering how relatively rare AS is coupled with the negative antibody test my doctor and I agreed it's very unlikely that I have it.

From what I could tell reading up on it it will usually take many years before the illness progresses enough to diagnose it accurately. The blood test for HLA-B27 is a good place to start, as it can usually be done at your local doctor's office. Since your pelvis is so painful you should probably get an x-ray or MRI regardless, to see if anything is going on.
 
Hi @Dechi,

Your symptoms & their timing sound a lot like inflammatory back pain to me.

I would often find that changing position would give some short-lived relief, but the pain would come back within minutes, getting up and moving around was the only real solution. Sometimes after I would be able to prop myself up in a comfy chair and get back to sleep like that, but my last big flare was in the thoracic spine, so that may not work with an SIJ/lumbar flare.

A consultant told me that this field has progressed quite a bit in the past 15 years. You've now got non-radiographic axial spondyloarthritis criteria to capture the disease before it progresses to x-ray visible damage, though I don't know how much this term is used in clinic as most people I've spoken to just have the AS label, despite being early stage and not strictly meeting AS criteria (yet). Do you have any other issues from this list of axial spa features?

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Ryan
 
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I don't have that but i have lots of back stiffness and pain which my chiropractor can somewhat control but its driving her nuts (i'm her first ME patient) since i can't do any of the treatments she would recommend from stretching to muscle building to physiotherapy.
IIRC my HLA-B27 was positive a decade ago, i never followed up on it since i had bigger fish at the time.

I'll be seeing a rheumy for the first time in a couple weeks, will be interesting to see what they come up with.
 
andypants said:
@Dechi I looked into it last year because of my 'burning' spine, long term on-and-off pelvis pain and inflammation, etc. I tested negatively for HLA-B27 that 90% of AS patients supposedly test positive for. Considering how relatively rare AS is coupled with the negative antibody test my doctor and I agreed it's very unlikely that I have it.
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If your symptoms persist @andypants don't let the negative HLA-B27 status stop you from investigating further. Plenty of people in AS groups are negative for HLA-B27.

The 90% figure drops quite a bit in some of the related spondyloarthropathies, so perhaps they've been misdiagnosed as AS but either way, it all overlaps quite a bit.
 
Jonathan Edwards said:
Actually for a lumbar spinal presentation the rate for B27 is higher than 90%. This really isn't a difficult diagnosis if the presentation is as the poster says.
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I imagine this is probably contentious but I have seen 95% listed for Caucasian, 80% for Mediterranean and only 50% given for African American AS populations.

One thing to consider, which was relevant to me, is that hypermobility can skew the obvious physical presentation. My Rheumy runs AS and hypermobility clinics and suggested hypermobility can hide/off-set the progressive stiffness from early AS in some cases.
 
Ryan31337 said:
My Rheumy runs AS and hypermobility clinics and suggested hypermobility can hide/off-set the progressive stiffness from early AS in some cases.
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I am afraid that sounds like bullshit to me. To know that you would need to do a large long term eepidemiology study which I am sure has never been done.

Most AS patients have near zero lumbar spinous process expansion by time of presentation. Hypermobility is very unlikely to affect that.

I am afraid thdere is a huge amiunt of hot air talked around hypermobility.
 
Ryan31337 said:
Hi @Dechi,

Your symptoms & their timing sound a lot like inflammatory back pain to me.

I would often find that changing position would give some short-lived relief, but the pain would come back within minutes, getting up and moving around was the only real solution. Sometimes after I would be able to prop myself up in a comfy chair and get back to sleep like that, but my last big flare was in the thoracic spine, so that may not work with an SIJ/lumbar flare.

A consultant told me that this field has progressed quite a bit in the past 15 years. You've now got non-radiographic axial spondyloarthritis criteria to capture the disease before it progresses to x-ray visible damage, though I don't know how much this term is used in clinic as most people I've spoken to just have the AS label, despite being early stage and not strictly meeting AS criteria (yet). Do you have any other issues from this list of axial spa features?

View attachment 6635

Ryan
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@Ryan31337 thank you for your response ! I had to check what all those meant in your list. I definitely check box no 1 (at least 4/5) and don’t think I have any of the other ones.

About elevated CRP, I don’t know.

When you say my symptoms sound like inflammatory back pain, is that a form of SA ?
 
Jonathan Edwards said:
Ank spond os actually very easy to doagnose for a trained rheumatologist. The physical exam and plain x-ray are nearly always clear cur. B27 is rarely worth doing but can exclude usefully.
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Thank you ! Hopefully the rheumatologist I will see knows what he is doing.
 
Jonathan Edwards said:
I am afraid that sounds like bullshit to me. To know that you would need to do a large long term eepidemiology study which I am sure has never been done.

Most AS patients have near zero lumbar spinous process expansion by time of presentation. Hypermobility is very unlikely to affect that.

I am afraid thdere is a huge amiunt of hot air talked around hypermobility.
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I'd be really interested to get your opinion on something related that also seems quite contentious @Jonathan Edwards - would you consider axial spondyloarthropathy a fit when the inflammatory changes spare the SI/lumbar spine and start higher up? If not, what's in the differential?

I'm aware of recent studies and subsequent proposals that involve diagnosing axial spa with a high degree of confidence based on imaging the whole spine (i.e. =>3 romanus lesions), but its not entirely clear to me if this is only in conjunction with prior SIJ changes or not.

I've been told over and over that SIJ/lumbar sparing simply doesn't happen, yet when I looked into the literature I found some interesting case studies and a couple of clinical studies that seemed to suggest it can and does, perhaps with quite significant frequency. For example:

acute inflammation in axial SpA affects only the spine and spares the SI joints in 23% of cases (13)
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https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.24493

This study reported IBP of very short duration and used MRI to report simultaneously on the SIJs and the LS, showing that inflammation occurs at both sites in a third of the patients. The traditionally held belief, based on radiographic findings, that disease starts at the SIJ and travels up the spine is therefore not supported by these results. In our study, MRI-determined acute LS skip lesions related to enthesitis were noted to coexist with sacroiliitis. In addition, it was found that spinal disease may exist in a subset of patients in the absence of SIJ involvement, suggesting that limited imaging of only one region may miss the diagnosis.
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https://www.ncbi.nlm.nih.gov/pubmed/19019894

These are 10 years old so I wondered if something has disproved their findings?

Ryan
 
Dechi said:
@Ryan31337When you say my symptoms sound like inflammatory back pain, is that a form of SA ?
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IBP is the key symptom of an axial spondyloarthropathy - ankylosing spondylitis is the prototypical form, but other types can cause it too.

It's important to understand if the pain is inflammatory or just mechanical pain :)

Ryan
 
@Dechi Could you possibly need a new mattress for your bed? I started getting hip pain while sleeping which turned out to be a mattress issue. Since I bought my new mattress I haven't had this problem anymore.
 
TigerLilea said:
@Dechi Could you possibly need a new mattress for your bed? I started getting hip pain while sleeping which turned out to be a mattress issue. Since I bought my new mattress I haven't had this problem anymore.
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I changed my mattress for this exact reason in 2008, then gace this mattress to my son in 2013 and got a new one. I returned 2 that gave me back pain and kept the third one, which is the one I have now. I make sure to rotate it every couple months and it’s not that old. I guess it’s always a possibility but why would it only happen sometimes ?
 
If you lived near me i would recommend my chiropractor, if she couldn't treat it she could tell you a lot more about it or send you to the right specialist.
That said i am hesitant to recommend a chiropractor unless you know a very good one who is on top of their field like mine and won't just keep you coming back forever with grandiose promises
If you ever do come down my way however i could get you a rush appt.
 
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