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Does pain scare you? #281614
10/03/18 01:29 PM
10/03/18 01:29 PM
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seymour Online OP
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When you have pain, or when your pain gets worse, does it scare you?

Whenever my pain gets worse I always get scared it will become permanent or bring on permanent damage and I feel anxious.

My therapist says not to fight the pain mentally when it’s there. That I should accept that it’s there in this moment but that it ebbs and flows.

The thing is that I’m scared that pain means poorly controlled disease which means damage and fusion. This association makes it difficult to keep my chill.

I always have a baseline of pain. Some days it’s 3/10, some days it’s 6/10... It ebbs and flows but never subsides.

I’m 32 so pain scares me cause I have so much more time to get damaged.

What helps me is living for today and not looking ahead much. Scientific research gives me hope.

Re: Does pain scare you? [Re: seymour] #281619
10/03/18 04:43 PM
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Pain doesn't make me scared. Angry sometimes, but not scared.

The thing to remember is that there is no direct correlation between pain and damage. Some people have severe pain but never develop significant damage. And there are some people who are surprised to be told that they are fused because they never had significant pain.

Also remember that fusion is not a death sentence. You can live a very happy, successful life with fusion.


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 pain scare you? [Re: SouthernMoss] #281620
10/03/18 05:24 PM
10/03/18 05:24 PM
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Originally Posted by SouthernMoss
Pain doesn't make me scared. Angry sometimes, but not scared.

The thing to remember is that there is no direct correlation between pain and damage. Some people have severe pain but never develop significant damage. And there are some people who are surprised to be told that they are fused because they never had significant pain.

Also remember that fusion is not a death sentence. You can live a very happy, successful life with fusion.


Indeed. In fact, some people choose to have their spines surgically fused in an effort to reduce pain.

Pain doesn't make me scared. Pain makes me annoyed -- annoyed that I can't do everything I want to do. What makes me scared are the long term effects of systemic inflammation. I'm scared it will shorten my life. I'm scared my children will have it, and it will shorten their lives.

The key to living with this is to let that fear motivate you -- to keep exercising, to spend more time with your family, to eat better -- rather than cripple you.

Re: Does pain scare you? [Re: seymour] #281622
10/03/18 05:56 PM
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seymour Online OP
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You both make good points. Thank you!

I'm not even sure what's going on at the moment as far as disease activity cause I can go from 2/10 pain to 7/10 pain and then back to 2/10 in 48 hours. It must mean my disease is poorly controlled.

One thing I guess I should remember is that AS is usually slow. Six months of suboptimal disease control doesn't mean intense damage. smile

As far as fusion goes I guess you're right. What scares me is my neck. I lost about 30% on one side and 50% on the other side even though I don't have fusion yet. I don't want to end up with a fully fused neck that will make me look stiff and make people ask annoying questions.

Thanks to both of you.

Re: Does pain scare you? [Re: seymour] #281623
10/03/18 05:56 PM
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Yes it does. Or rather it did before I learned to deal with my new normal. For a couple of reasons.

One - and I NEVER used to feel this way - when something new hurts I always fear it's permanent. Weirdly, I have virtually no back pain. All my pain seems to be referred to my front.

The other reason is that, if you do too much Googling online about health issues, and I do, it inevitably leads down a rabbit hole of any unexplained pain that doesn't go away for a long time potentially being a sign of cancer. I've had to train myself not to assume every new thing that doesn't go away is a sign that I have something life threatening. I KNOW what I have. There's no reason to always assume it's something new and worse.

What gives me HOPE, however, are the stories I've heard from people in their 60s with AS who said that their 50s were the roughest time for them. That once their spines finished fusing (that's a clumsy way of putting it) they were in a lot less pain. So I'm focused on keeping up with my physical therapy, eating well, staying in as good a shape as I can, and crossing my fingers that there are better days ahead of me. My own mother is proof. She has RA and a bad back but she's in her 80s and still living an active life.

If there's a silver lining at all to my PsA and AS it's that it's forced me to adopt healthy lifestyle choices. So the way I figure it, by the time I'm in my 60s, because I HAVE to take such good care of myself, I won't be all that different from anyone else my age. And I'll better know how to deal with the aches and pains that come with aging than they will.

To quote Bettie Davis, "Getting old ain't for sissies."

Last edited by MichaelSean; 10/03/18 06:16 PM.
Re: Does pain scare you? [Re: MichaelSean] #281624
10/03/18 06:06 PM
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Originally Posted by MichaelSean


What gives me HOPE, however, are the stories I've heard from people in their 60s with AS who said that their 50s were the roughest time for them.


And I've heard people in their 50's tell me that their 20's and 30's were the worst part and that the disease as kinda slowed down with age. laugh

Re: Does pain scare you? [Re: seymour] #281625
10/03/18 06:08 PM
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Originally Posted by seymour
Originally Posted by MichaelSean


What gives me HOPE, however, are the stories I've heard from people in their 60s with AS who said that their 50s were the roughest time for them.


And I've heard people in their 50's tell me that their 20's and 30's were the worst part and that the disease as kinda slowed down with age. laugh


It probably all depends on when it strikes you. I can't say for sure how long I've had PsA and AS but it was never bad enough for me to notice until I was 48.

Re: Does pain scare you? [Re: seymour] #281626
10/03/18 06:42 PM
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I don't think you have to be fully fused to stop having pain. I know a guy who's 56, has AS since his late 20's. He was in major pain in his 20's and 30's and was diagnosed at 40. Only takes NSAIDs. He says he is almost painless now, and his x-rays from two weeks ago revealed only fusion of SI joints and mild fusion in neck.

Re: Does pain scare you? [Re: seymour] #281627
10/03/18 07:08 PM
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I did only NSAIDs for a few years but I finally got to a point where the Indomethicin wasn't cutting it anymore. And I had more than one doctor tell me, "Holy hell! You shouldn't be taking Intomethicin for YEARS!" That's when I got switched over to a biologic.

My spine doctor wants me to try a nerve block to see if it will help get my head pressure/pain under control. I'm a little nervous about it to be honest. I know it's a relatively safe and temporary procedure and my physical therapist thinks I should try it. But I'm still going back and forth.

Last edited by MichaelSean; 10/03/18 07:36 PM.
Re: Does pain scare you? [Re: seymour] #281630
10/03/18 09:02 PM
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Originally Posted by seymour


As far as fusion goes I guess you're right. What scares me is my neck. I lost about 30% on one side and 50% on the other side even though I don't have fusion yet. I don't want to end up with a fully fused neck that will make me look stiff and make people ask annoying questions.



Anybody like me? Seems like I'm the only one who freaks out about the neck so much. I think I may be exaggerating.

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