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Does your AS show? #281679
10/09/18 04:02 AM
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seymour Online OP
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Hi everybody,

I was wondering: is your AS evident or still invisible?

If it's evident, are you self-conscious and do you get a lot of questions?

If it doesn't show, are you scared that one day it will and do you talk about your disease?

Thank you!

Re: Does your AS show? [Re: seymour] #281680
10/09/18 09:03 AM
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Morning Seymour,

My AS is not evident on the surface. Only minor psoriasis on face. My boss told me I looked well previously when I was very much feeling shitty internally. The problem with a hidden disease I guess.

I'm not scared about talking about the disease to anybody. Nothing to be embarassed about. I was naiive to the term 'athritus' in general before diagnosis and thought it was something only old people get. That aside, I'd like to have some idea of where my health might be say, next week, next year, 5 years etc. This is a challenge for me as I intended on becoming self employed and would love another child. All of the above makes it very hard to commit to anything and plan.

For every problem there is a solution however, even if it's not yet discovered. I'm an engineer by trade and I believe in multiple solutions to problems. Lets hope we can all minimise progression of the disease until that happens. I'm hanging my hat on stem cell therapy which has proved to show some benefit in treating this disease during trials, but I'm yet to find anybody who has even had it to treat AS or even have it to repair damage to their joints. I'm nto sure how much investment this disease gets in terms of research.

Chin up!

Re: Does your AS show? [Re: seymour] #281685
10/09/18 02:38 PM
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My AS is still invisible. It was evident in the limp that would come and go until my knee surgery 7 weeks ago. But I assume your question is aimed more at spinal evidence.

It's not physical evidence, but my AS can be evident when I am not able to work as long or as hard as others and have to stop frequently to rest my back. But most everyone I know already knows that I have "something" even if they are not sure what it is or exactly how it affects me. I don't talk about my disease very often, unless it comes up naturally in conversation. If people have questions I am happy to answer them. But I usually give them the short version unless they are close friends or family, or if I can tell that the person genuinely wants to know more about it.

As far as worrying that one day it will show, I generally don't. As the old folks used to say "don't borrow trouble." I try to live in the now and not get bogged down in "what if".


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Does your AS show? [Re: seymour] #281687
10/09/18 03:44 PM
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People I'm in frequent contact with usually notice at some point. Sometimes I limp and move stiffly. And I have trouble with my neck so will turn my upper body to look at people. I use a quell device for pain control and that is very evident if I'm wearing shorts. The other thing that usually clues people in is diet. If I'm out to eat with others my gluten-free low starch and no processed food diet is noted. Then there are questions. I used to be cagey about it but now when asked I tell them all about spondyloarthritis. Some know about these diseases and others don't. Some are interested and others start talking about their own aches and pains. Some don't believe it because I look healthy enough.

And I've also had some remarkable conversations with people who also have SpA, suspect they do or have family members or friends with the disease, or with the related inflammatory bowel diseases. There's some sharing and understanding. I've come to the conclusion that hiding the disease, denying or minimizing it can make you feel incredibly isolated. Like it's a guilty secret.

So for me there is no fear in having people notice or in talking about it. It is awkward when people say you don't look sick. It's also irritating to get advice about yoga, diet and exercise - things I'm already doing. I have one acquaintance who seems to think I'm not doing the low starch diet correctly. There are others who think I'm just getting older (although this started in my thirties).

Of course I worry about disease progression but thanks to humira I can go to the gym three or more times a week to keep as strong and flexible as possible. In some ways I'm healthier than my peers because I have to eat right and exercise regularly to remain functional. The thing that impresses people the most when I talk about my experience is the terrible stiffness in the morning often starting at 3 a.m. The terrible fatigue that comes with a flare. And the fact that if I sit or stand for very long that stiffness returns so I generally always keep moving. That gets them thinking.

Re: Does your AS show? [Re: SouthernMoss] #281691
10/09/18 05:45 PM
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Originally Posted by SouthernMoss
My AS is still invisible.

As far as worrying that one day it will show, I generally don't. As the old folks used to say "don't borrow trouble." I try to live in the now and not get bogged down in "what if".


I think you've had symptoms since your 20's, right?

Also I agree very much with the "don't borrow trouble" thing. I'm trying to live day by day, it's a struggle. I'm used to worrying about disease progression and trying to anticipate which section will fuse based on my current limitations or pains but my rheumy says it's completely useless to do that as I might never fuse and if I do it may not even be where i'm currently stiff. She says progression is absolutely impossible to determine and that I might as well let go.

Re: Does your AS show? [Re: seymour] #281693
10/09/18 06:36 PM
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Hello, seymour:

My AS--kyphosis mostly--is quite obvious despite radical osteotomy.

My Latin teacher always told us "If you can't be a shining example, at least be a dire warning!" So that is what I am--a dire warning eliciting screams and tears sometimes "Quasimodo" and "Igor" too!

It's all good,

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: seymour] #281694
10/09/18 06:41 PM
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Seymour, I will tell you man, it's a tough one. I have been walking around stiff, limping or even at the best of times wobbling. I am generally good enough when I leave the house where I can try really hard to move a little more normal but it is a pain. As I type this all my fingers feel like they are on a separate system and it's a bit of pressure to have me synch everything up, I think right now everything for me hurts and takes more time. My shoulder has really been a pain lately so I do look like a total mess.

My AS shows unless I am trying to make sure it doesn't show, but aside from the pain and stiffness and perhaps generally wonkiness i have developed, you may not know.

I was hoping that by now I may have had the chance of traveling the world, and having a great life, but it seems like pain and misery are the new things to look forward to.

I know what you are getting at though, and while being stiff and sore sucks, I wouldn't want to look forward to being hunched over or in a wheelchair. It's a shame that our disease isn't as popular as some other though, I am sure we would have some very successful drugs if it was.

Re: Does your AS show? [Re: seymour] #281697
10/09/18 07:01 PM
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I kind of have the opposite issue. My AS isn't visible at all. And because I'm pretty active (trying to be at least although in different ways since my diagnosis) people assume I'm the picture of health. I don't feel on the inside the way I look on the outside.

Re: Does your AS show? [Re: seymour] #281698
10/09/18 07:03 PM
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Originally Posted by seymour
Originally Posted by SouthernMoss
My AS is still invisible.

As far as worrying that one day it will show, I generally don't. As the old folks used to say "don't borrow trouble." I try to live in the now and not get bogged down in "what if".


I think you've had symptoms since your 20's, right?

Also I agree very much with the "don't borrow trouble" thing. I'm trying to live day by day, it's a struggle. I'm used to worrying about disease progression and trying to anticipate which section will fuse based on my current limitations or pains but my rheumy says it's completely useless to do that as I might never fuse and if I do it may not even be where i'm currently stiff. She says progression is absolutely impossible to determine and that I might as well let go.


Yes, my symptoms first started in my 20's.

Your rheumy has given you good advice on letting it go. I know it's hard to do sometimes.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Does your AS show? [Re: SouthernMoss] #281735
10/10/18 07:09 PM
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Originally Posted by SouthernMoss
Originally Posted by seymour
Originally Posted by SouthernMoss
My AS is still invisible.

As far as worrying that one day it will show, I generally don't. As the old folks used to say "don't borrow trouble." I try to live in the now and not get bogged down in "what if".


I think you've had symptoms since your 20's, right?

Also I agree very much with the "don't borrow trouble" thing. I'm trying to live day by day, it's a struggle. I'm used to worrying about disease progression and trying to anticipate which section will fuse based on my current limitations or pains but my rheumy says it's completely useless to do that as I might never fuse and if I do it may not even be where i'm currently stiff. She says progression is absolutely impossible to determine and that I might as well let go.


Yes, my symptoms first started in my 20's.

Your rheumy has given you good advice on letting it go. I know it's hard to do sometimes.


Yes very hard cause I alway need control and assurance and I can't get it.

I can't even say "Ok so I'm stiff and in pain so I'll fuse and that's that" cause even that isn't true. It's completely unpredictable and that's what causing me anxiety and scares me.

Re: Does your AS show? [Re: seymour] #281737
10/11/18 01:54 AM
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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
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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
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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
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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
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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
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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
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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
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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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