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The Worst Thing About AS
#174684 05/18/10 05:49 AM
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I am one of those AS patients that has no periods of remission. I have continual inflammation and continual pain. It's gotten to the point that I have had to stop working. I worked at a sedentary job and I find that I can't even do that any more. My range of motion is severely compromised. I've found that the worst thing about AS is that it's not fatal. It should be. Any disease that robs one of their body and ultimately their mind should be fatal.

I'm sorry that I'm being so negative. It's just been a bad day. Some days the depression just gets the better of me. I mourn for what I was and I'm not sure I can live with what I've become.

Re: The Worst Thing About AS
DaleD #174690 05/18/10 09:00 AM
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I understand, the only true good days I have had is after I started the Enbrel and had a medrol pack. Trying to get more pred from the dr and it is like trying to get pain meds from the pain specialist. Sometimes I think they just want to keep me feeling this way so I keep going back and paying the copay and they get money for an office visit. I'm not as stiff, but the pain and fatigue is still here.....
Talk to your dr, they really like handing out the anti d's.....
They do help some, but how can they truly expect us not to be depressed when you hurt 24 hrs a day.


I would be unstoppable, if I could just get started.

Re: The Worst Thing About AS
mrye4709 #174701 05/18/10 01:08 PM
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Dale, I really know how you feel. Losing my passions, losing my ability - things I have excelled at in my life, all those things that I used to define myself, just went out the door like yesterday's news. That's been harder to deal with than any physical pain I've had to endure so far in the 30+ years I've dealt with AS. It's pain of the soul and it takes healing in your heart to ease it. If you're like me, you have been mouring over each personal loss like a beloved family member - feeling sad, angry, frustrated and depressed.

I still struggle with these feelings, but I did get some grief counseling, and that has helped me to somewhat let go of those feelings that arise due to something I have no control over. It's not easy but maybe that route could help for you too. It can get better, you just have to switch it over in your own head. Good luck to you, but remember, you're not alone! ...Jen

Re: The Worst Thing About AS
jrp #174702 05/18/10 01:15 PM
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Personally, I hate these posts. It doesn't seem productive to focus on the bad. This monster already lives in my body, I am not going to let it live in my mind.

Saying that, sorry, somedays it really sucks.

Hope you are exercising, DAILY. I have not lost much ROM except bending over and in my knuckles. The PT commented on how strong I am and mentioned how important it is to keep that up.

Perhaps you need to see a PT, exercise helps sadness too and it is the only thing we can do to combat this monster--that will have a real effect on the disease.

Sorry, Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: The Worst Thing About AS
Banana #174716 05/18/10 07:57 PM
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I'll tell you what bugs me the most about AS....not being able to wipe my backend on a bad day! Someone had to say it!


Graves Disease/ dx 7/2006, Total thyroidectomy/1/2007 and suprise, papillary cancer of the sick bugger.
Spondy hell 1/2008 dx with undifferentiated to AS and as of 4/2012 RA thrown in. What?
MTX 0.8 injections weekly, HUMIRA every 10 days, began on 10/18/10, folic acid, prednisone as needed, vicodin or tramadol for pain. Pain......hurts!
Re: The Worst Thing About AS
lilbluesmurf #174719 05/18/10 08:12 PM
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Hey lilblue, I can actually do that since I started the Enbrel. I'm telling you, I always thought the pain was the worst part, but now I can honestly say the stiffness was the worst. I still have pain, but I can wipe, lol....


I would be unstoppable, if I could just get started.

Re: The Worst Thing About AS
mrye4709 #174729 05/18/10 09:25 PM
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ya hoo!!!! You go girl!!!


Graves Disease/ dx 7/2006, Total thyroidectomy/1/2007 and suprise, papillary cancer of the sick bugger.
Spondy hell 1/2008 dx with undifferentiated to AS and as of 4/2012 RA thrown in. What?
MTX 0.8 injections weekly, HUMIRA every 10 days, began on 10/18/10, folic acid, prednisone as needed, vicodin or tramadol for pain. Pain......hurts!
Re: The Worst Thing About AS
lilbluesmurf #174743 05/19/10 12:19 AM
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Anna, I hate posts like this too, because if we dont stay positive, and look at the good side of things then this disease will eat us alive. But, I also completely understand. The unrelenting pain and fatigue is so hard to live with, and even harder to explain to those who dont have it. But I will fight it till the day I die, and I want to live to be 100, even with the pain. Because I have two wonderful beautiful kids I get to watch grow up, and I have a wonderful devoted husband to grow old with. If I focus on the good things I have (instead of thinking I have 50 plus years of pain to look at) then things almost seem normal. good luck to you all, and try to look for the good in everything...and if you think the bad thoughts are taking over your mind, please reach out for help....

Re: The Worst Thing About AS
#174747 05/19/10 01:06 AM
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They are reaching out for help, here. I can tell you from experience, it is easier to be positive when you aren't fighting the excruciating pain. Maybe the negative posts aren't the greatest for newbies to read, but when they are hurting so bad they come here for understanding and support. I almost left because I felt like if I didn't have anything positive to say I shouldn't be here. It is for support, not just postitive. Not trying to start anything, just don't want people to feel like they don't belong. Where else are they to go if not here, even if they aren't always positive.


I would be unstoppable, if I could just get started.

Re: The Worst Thing About AS
mrye4709 #174751 05/19/10 01:17 AM
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Well, whining about your individual pain in one thing, and helpful to get support but dwelling on what is the worst of AS? Really, I can look at what I can't do or I can look at what I can do. Which is more helpful to me?

I totally understand, just pointing out the different ways we can look at what we are going to be stuck with the rest of our lives. Which, like Kelly I hope is a long time, even if I can't ice skate anymore.

Yes, living with constant pain sucks. SUCKS. I can tell you from experience that focusing on the pain and bad doesn't help. Sure we all do it, and can't fight the monster constantly, but we also don't need to dwell in hell every minute of my life either.

a


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
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