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Patients Ankylosing spondylitis

Could we discuss Ankylosing Spondylitis
1

Member Carenity
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I was diagnosed in 2016 after years of pain and living with symptoms. I also fight depression and some days are def easier than others. Its good to know I am not alone but its also heartbreaking because I wouldn't wish this disease on anyone. Hugs to you all!

Could we discuss Ankylosing Spondylitis
1

Member Carenity
Posted on

@Hidden username I know how you feel. Right now I’m depressed too. I’m not sure why I’m struggling with so much pain right now. I saw my rheumatologist yesterday and she wants me to stay on current medication suggesting I might have to add another one as well. Oh joy, another drug I have to take. I hate being like this as well. I’m trying to find ways to cope with it but I’m not having much luck. I’m considering going to a therapist to see they can give me some insight as to how to deal with all of this. If I find some good strategies I will pass them on. 

Could we discuss Ankylosing Spondylitis
1

Member Carenity
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Hello again, I’m just wondering why I feel ok when I first get to work but within an hour my back (lower and upper) starts to ache . By noon it’s gnawing at me , by the time I leave work around 4:00 I’m in agony. I get in my car and it feels like my muscles all around my spine upper and lower are swelled up and puffy with a burning feeling and a numbness. Soon as I get home I jump on the couch and a couple hours later the pain goes down . About nine at night I go to bed but sleep good for about 4 hours and then i wake up and the flip flop game starts until I get up. Awful way to live.

Could we discuss Ankylosing Spondylitis
Member Carenity
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@DD41261 I have the same problem. I’m retired now and just doing the simplest task can cause me the same kind of pain. My heating pad is my best friend. I also use biofreeze often as it does help. It sucks that we have to endure this kind of pain, it’s truly exhausting. 

Could we discuss Ankylosing Spondylitis
Member Carenity
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I have learned to be extremely flexible with my schedule at home.  I am not working at the time but searching for work everywhere.  Trying to find a job that could be as flexible with me as I have to be with my life.   Has anyone had any luck keeping or finding a job with this awful condition?  I keep a running list of things that I can do around the house and in the yard so when I feel good I have something to do immediately.  I have found that keeping in motion seems to lessen the pain and fatigue a bit.  But  inevitably the pain and exhaustion take over and there is nothing I can do.   

Could we discuss Ankylosing Spondylitis
Member Carenity
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I've tried humira, Enbrel, and symponi.  They all are TNF alpha blockers, and they were all equally ineffective.  I learned about cocentyx and that it is active on an entirely different gene.  It's a blocker for the IL - 17.  It has been effective enough to justify leaving well enough alone, and sticking with it.  

  Still, with all the best options for meds, treatment, and patience, I'm still not able to sustain full time work. Not even close really.  Ten minutes of food shopping on my feet on concrete floors is enough to leave me feeling it the next day.  After years of qualifying myself, and schooling, OJT, and interest in pushing on through so much we all are too aware of, and finally getting to work for General Dynamics as a machinist ( a one income to support my family.   Finally!! a thousand bux a week, excellent benefits package, and the respect of my coworkers as a knowledgeable and skilled individual ) and I had to quit so I didn't take it too far and end up falling into a machine or drop something on my foot,  or worse yet, hurt someone else when whichever muscle wants to fail at a bad time. 

  The moral of that afterthought is that even when the meds work well enough, it's not enough because it doesn't enable me, it just prevents the worst case scenario.

Could we discuss Ankylosing Spondylitis
Member Carenity
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 For the gentleman that bought that amazing chair, could you please share with us what chair that you bought. Right now I have to sleep in a recliner, which takes me away from my husband who is sleeping in the bed. I also take infusions called Remicade and I have not heard anyone mention that at all. Are any of you taking the infusions?

Could we discuss Ankylosing Spondylitis
Member Carenity
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I also have as my body hurts I have depression my pain is in the ribs I feel like if some one is ripping them out and now is my right hand can't hold nothing with it because it hurts. I'm try to deal with this because it not easy 

Could we discuss Ankylosing Spondylitis
Member Carenity
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@Hidden username It is from Relax the back.  Also called the perfect chair.  If there is a store near you, give it a try at their store.

Could we discuss Ankylosing Spondylitis
Member Carenity
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@Hidden username They will take the pressure off the spine.  Anyone can use them.  Roll back too far, and you will go to sleep.  I've had mine more than 15 years.  Other chairs or recliners are painful or not even close to comfortable..