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Does pain scare you? #281614
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
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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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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
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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
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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.

Re: Does pain scare you? [Re: seymour] #281637
10/04/18 01:15 PM
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Originally Posted by seymour
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.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.

Last edited by MichaelSean; 10/04/18 01:16 PM.
Re: Does pain scare you? [Re: seymour] #281640
10/04/18 04:27 PM
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Originally Posted by seymour
When you have pain, or when your pain gets worse, does it scare you?


I will have a go at that question. At first I wasn't going to respond because I prefer to avoid that topic. Then my first thought was more cavalier and thought --NO! it doesn't scare me. Then I got more humble and had to confess, YES, certain episodes of pain do terrify me. I recall one episode when I was on literally clinging to the top of a door and thought if I let go I would die. I even envisioned my death certificate and it read "succumbed to pain". Now that I survived it - I like to tell the story and say it wasn't that bad. I hope it never happens again because I am not sure what I would do. Maybe just succumb and die but hopefully not.

Now for the boring philosophical stuff. My life is like a river. No I won't go there but I do like to ride the river. I like to see what is around the next bend. I don't worry about where the river leads - I just go. If I worried that around every bend in the river was something awful and was afraid then I certainly wouldn't enjoy that kind of ride. I just look forward to what is around the next bend - whatever it may be.

"Getting old ain't for sissies." --- I like that quote --- I think it applies to being young too.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Does pain scare you? [Re: DadCue] #281641
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Originally Posted by DadCue
[quote=seymour]

Now for the boring philosophical stuff. My life is like a river. No I won't go there but I do like to ride the river. I like to see what is around the next bend. I don't worry about where the river leads - I just go. If I worried that around every bend in the river was something awful and was afraid then I certainly wouldn't enjoy that kind of ride. I just look forward to what is around the next bend - whatever it may be.


What you described is what I'm working toward.

My fear wasn't really caused by pain but by a lump I noticed under my left ear in May of last year. I had it CT scanned and the results were that it was not cancerous. Based on the results of the CT scan my primary care physician at the time told me that a biopsy wasn't necessary. But it's still there. It hasn't gotten any bigger but it hasn't gone away. For a while I celebrated. But my fear came back when another doctor, this year, told me that the only way to know FOR SURE was to have it biopsied. And I'm kicking myself for not having done that, even though I was following my doctor's advice. I play a what if game in my mind. WHAT IF I have lymphoma and I've let it go for more than a year because I didn't have that biopsy? That thought haunts me. What if the tech that looked at the CT scan made a mistake? Why didn't I go ahead with it and MAKE SURE?

But I am doing something about it now. I'm seeing a head and neck specialist. I had my first appointment with him on Monday. He's having me gather up the CT scan that was done of my sinuses and the one that was done of the lump on my neck. He's going to look at them himself and make a recommendation as to whether or not I need to have it biopsied. My hope is that by the end of October I have all this behind me. Because every time I feel weird ... if I can't sleep, or get a new pain, or feel fatigued ... I wonder if it's the cancer that I didn't catch last year spreading. If it were aggressive, sure, I'd know by now. Or be dead by now. But there are slow growing forms of Non-Hodgkins lymphoma.

My rheumatologist, based on my blood work, tells me not to worry about that at all. But I still do. Fear isn't always logical. But I look forward, by the end of this month I hope, to adopt your attitude and just live. See what's around the next corner. Be present. In the now. And stop worrying about what MIGHT be. Because living this way sucks. And it's exhausting. I don't like the man I am right now. I miss the man who rarely ever visited doctors and never thought anything bad was going to happen to him.

Last edited by MichaelSean; 10/04/18 06:13 PM.
Re: Does pain scare you? [Re: MichaelSean] #281645
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Originally Posted by MichaelSean
Because living this way sucks. And it's exhausting.


Maybe you are trying to go upstream too much. That's fine if you want some do-overs but it usually isn't worth it. Just go with the flow. I think getting that lump (lymph node I thought) removed would be good for you. Then you can move on and hopefully what is downstream will be more enjoyable.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Does pain scare you? [Re: DadCue] #281646
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Originally Posted by DadCue
Originally Posted by MichaelSean
Because living this way sucks. And it's exhausting.


Maybe you are trying to go upstream too much. That's fine if you want some do-overs but it usually isn't worth it. Just go with the flow. I think getting that lump (lymph node I thought) removed would be good for you. Then you can move on an hopefully what is downstream will be more enjoyable.


I hear you. And you're 100% right. I have to get some certainty with regards to this swollen lymph node on my neck. Because it haunts me. And it's keeping me from being fully present for my life. I've wasted a year and a half worrying about this damn thing. I plan to get some closure on it by the end of the month.

Re: Does pain scare you? [Re: MichaelSean] #281647
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Originally Posted by MichaelSean
Originally Posted by seymour
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.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.


I mean I know I'm not the only one with neck problems, but I never saw anybody freak out as much as I do about possible neck fusion and what others might say if my neck is stiff and whatnot. It's strange that I'm so fixated on this.

Re: Does pain scare you? [Re: seymour] #281663
10/06/18 05:35 PM
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Originally Posted by seymour
Originally Posted by MichaelSean
Originally Posted by seymour
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.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.


I mean I know I'm not the only one with neck problems, but I never saw anybody freak out as much as I do about possible neck fusion and what others might say if my neck is stiff and whatnot. It's strange that I'm so fixated on this.


Any other neck freak here? :P

Re: Does pain scare you? [Re: seymour] #281704
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Guys. I guess we're far away from a cure, eh?

I got used to the pain it seems, but it scares me. I sit here and notably if I wasn't in pain I would be enjoying my time sitting here, but the pain is really knowing that sitting here doing nothing is painful, and that is scary.

Re: Does pain scare you? [Re: seymour] #281734
10/10/18 07:07 PM
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We may be far away from a cure but I think we're not THAT far away from a treatment that will halt disease progression.

Dr Reveille said himself that he believes we'll see a cure in his lifetime and he must be in his 60's. :P

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