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Newbie, undiagnosed.
#280840 07/24/18 07:32 PM
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Hey all, newbie here from the U.K.

I think I’ve got AS. For the past ten years, I’ve had sporadic issues with my back, but it was never really enough to worry about. I did get checked out with a blood test and X-ray ten years ago after lots of stiffness in my back and fatigue, all the usual AS signs (my brother was diagnosed at 19, so I knew a bit about it). All came back fine at that time. The most worrying symptom for me was that sometimes, out of the blue, I would just get this astonishing pain in my tailbone, which would start as a dull ache, then radiate out into my backside until it got to a level 10 pain and I almost always passed out. It happens after sex a lot. If I orgasm strongly, it can set it off. Anybody else had that? It usually only lasts about half an hour/until I faint.

But over the years, it didn’t happen often, so I just kinda forgot about it.

In the past month, I’ve been in a flare of some kind. My back, hips, neck have all been screaming at me in some way 24/7. For three weeks the pain was never less than a 7 (Mankoski Scale) and mostly higher. The morning stiffness, which has never really gone away in ten years, has been horrendous. The fatigue is something else!

I’ve been to the docs, blood test does show some inflammation. X-ray booked for this Friday.

The last couple of days it has eased off a lot, but it seems to have left me with digestive trouble too.

Anyway, nice to meet you all. Let me know if anyone else has the tailbone thing. It’s weird, and I’ve never heard of anyone having that kind of thing.

Re: Newbie, undiagnosed.
AH1 #280850 07/27/18 02:55 PM
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Howdy.

If you can locate the center in the UK where they specialize in arthritic issues (perhaps you already are being seen) that would help in an accurate diagnosis. It is the single most important action you can take. Many of us struggled for years until we were seen by a qualified Rheumatologist and it made our road much easier.


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Newbie, undiagnosed.
AH1 #280851 07/27/18 05:59 PM
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Hi WhiteCell, thanks for your reply!

I’m fortunate to live in Bath, UK where they have a great hospital for just this kind of thing! But I have to wait for my doctor to refer me to them. Had an X-ray today, got to wait a week for results. I’m also lucky (sort of) that I have my brother’s diagnosis to point the doctors in the right direction.

I don’t want this thing, but I do need to know either way what I’m dealing with.

All the best 😁

Re: Newbie, undiagnosed.
AH1 #285075 01/11/23 08:41 AM
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