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Re: Does your AS show? [Re: seymour] #281737
10/11/18 01:54 AM
10/11/18 01:54 AM
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Mary Beth Offline
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My neck is very stiff so yes mine is noticeable and yes I get questions. I’m a bit self-conscious about it. Not horribly so and I’m open about telling people but I’d be lying if I said I never think about it.

But I’ll tell anyone who asks. Education starts with me.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Does your AS show? [Re: Mary Beth] #281748
10/11/18 05:43 PM
10/11/18 05:43 PM
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seymour Online OP
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Originally Posted by Mary Beth
My neck is very stiff so yes mine is noticeable and yes I get questions. I’m a bit self-conscious about it. Not horribly so and I’m open about telling people but I’d be lying if I said I never think about it.

But I’ll tell anyone who asks. Education starts with me.


Thanks for giving an honest answer. When you say "very stiff" you mean no left-right and up-down?

It's really the thing about AS that scares me. Having a frozen neck panics me.

Re: Does your AS show? [Re: seymour] #281758
10/12/18 01:38 AM
10/12/18 01:38 AM
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Mary Beth Offline
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Originally Posted by seymour
Originally Posted by Mary Beth
My neck is very stiff so yes mine is noticeable and yes I get questions. I’m a bit self-conscious about it. Not horribly so and I’m open about telling people but I’d be lying if I said I never think about it.

But I’ll tell anyone who asks. Education starts with me.


Thanks for giving an honest answer. When you say "very stiff" you mean no left-right and up-down?

It's really the thing about AS that scares me. Having a frozen neck panics me.


Yes, I only have about 10 degrees motion. Mostly I’ve just gotten used to it. I only panic if I think about surgery. Intubation would be an issue. Rear end collision could be bad too.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Does your AS show? [Re: seymour] #281761
10/12/18 03:06 AM
10/12/18 03:06 AM
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Do you know what’s causing the stiffness?

Re: Does your AS show? [Re: seymour] #281776
10/13/18 04:06 AM
10/13/18 04:06 AM
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Mary Beth Offline
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Originally Posted by seymour
Do you know what’s causing the stiffness?


Calcification, I assume. I mean, it's permanent. Been like this for many years and my inflammation levels are low. ROM in my chest wall and lumbar spine were also 0 or close to it when I started Humira, but both those returned to normal.

The problem is that with other joints, PT will do exercises to force them to move but they can't really do that with your neck. I'm not sure if I'm fused or not because I haven't had x-rays in years; not much point as I am in drug-induced remission and not losing ROM elsewhere.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Does your AS show? [Re: seymour] #281781
10/14/18 03:31 AM
10/14/18 03:31 AM
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Hello, seymour:

A stage before fusion is thickening of the synovium called "fibrosis." It is reversible with considerable effort. According to Professor Ebringer, with proper diet we can turn the clock back about two years--I needed TWENTY!

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Does your AS show? [Re: Mary Beth] #281788
10/14/18 09:44 PM
10/14/18 09:44 PM
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Originally Posted by Mary Beth
Originally Posted by seymour
Do you know what’s causing the stiffness?


Calcification, I assume. I mean, it's permanent. Been like this for many years and my inflammation levels are low. ROM in my chest wall and lumbar spine were also 0 or close to it when I started Humira, but both those returned to normal.

The problem is that with other joints, PT will do exercises to force them to move but they can't really do that with your neck. I'm not sure if I'm fused or not because I haven't had x-rays in years; not much point as I am in drug-induced remission and not losing ROM elsewhere.


I would assume the same for me as I had lost a lot of neck ROM even when my x-Rays showed no fusion. I always assumed that at least at that time it was soft tissue related.

I have a friend who’s 56 and he only has about 20 degrees on all sides and he has syndesmophytes but they’re not fused. So I guess the lack of motion can come from the body blocking the movements through muscle spasms?

Re: Does your AS show? [Re: seymour] #281791
10/14/18 11:22 PM
10/14/18 11:22 PM
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Mary Beth Offline
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Originally Posted by seymour
Originally Posted by Mary Beth
Originally Posted by seymour
Do you know what’s causing the stiffness?


Calcification, I assume. I mean, it's permanent. Been like this for many years and my inflammation levels are low. ROM in my chest wall and lumbar spine were also 0 or close to it when I started Humira, but both those returned to normal.

The problem is that with other joints, PT will do exercises to force them to move but they can't really do that with your neck. I'm not sure if I'm fused or not because I haven't had x-rays in years; not much point as I am in drug-induced remission and not losing ROM elsewhere.


I would assume the same for me as I had lost a lot of neck ROM even when my x-Rays showed no fusion. I always assumed that at least at that time it was soft tissue related.

I have a friend who’s 56 and he only has about 20 degrees on all sides and he has syndesmophytes but they’re not fused. So I guess the lack of motion can come from the body blocking the movements through muscle spasms?


I think so, yes. I have visible spasm in my neck and rather chronic knots in the muscles that run up the side of your neck and also across my shoulders. Massage can work out the knots but they come right back. It doesn't hurt any more but I think that the nerves are just exhausted, frankly. That much spasm SHOULD hurt. Though I've been told by several doctors and physical therapists that I must have a high pain tolerance. I dunno, I think I'm a wimp.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
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