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Ankylosing Spondylitis

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Ankylosing Spondylitis

Postby firejon » Fri Mar 09, 2012 12:33 pm

Hi all, anyone.
I have in the last year been diagnosed with Ankylosing Spondylitis (AS). My pelvis is fused with bone to my sacroiliac joint. This causes lots of swelling of the muscles and joints around the lumbar region of my spine.
I suffer with lots of pain and am on much medication for it.
Methotrexate
Humira
Tramadol
Tramulief
Arcoxia
I no longer work as my job used to be as a home carer looking after the elderly. I used to ride my motorbike from house to house helping the elderly get dressed, make meals, give meds ect..
Due to the pain I can't do my job anymore.

I am finding life very hard at the moment and my mood is all over the place and I have been very depressed. I get angry at small things that normally would not bother me, and as I get angry i know its only becasue of the pain but im still unable to stop myself building up into a rage, then shortly after breaking down in tears. Everything I do hurts, when I start to improve and feel I'm getting better something knocks me back again.
I have to do streches everyday and I go swimming to try and support my muscle structure, but I have to fight through pain in order to do it.
I'm married and my wife is fantastic but i hate the burden I am on her and long to get back to work and bring in some money myself to the household as i hate living off her, she does not mind and i'd do it for her but its a self respect thing, I just want to be out there working and providing for my home.
I often feel like there is no point anymore, AS has got me and the treatments im on will only slow down what will happen to me in the future. When I first went off work I was flat out on the floor, I worked through pain for too long and pulled most of the muscles in my upper back as they were trying to compensate for the lack of strength in my lower back. I'm terrified of going back to being stuck on the floor.
I am at least able to sit and swim now but its very hard to get the motivation these days.

So this is me and my life, My mind is all over the place my body fused in one place.
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Re: Ankylosing Spondylitis

Postby jasmin » Mon Mar 12, 2012 11:58 am

Hi, firejon, welcome to the forum! Are you getting disability money, because of this condition? You did work hard for years, the state owes you, especially since you may have hurt yourself on the job too.
You can still be a friend and confidant to your wife, you can still be there for her. That means more than anything else in a woman's life.
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Re: Ankylosing Spondylitis

Postby Itachi » Mon Mar 26, 2012 4:38 pm

What are your surgical options?

Here is another one with spinal disease, sheuermann kyphosys. I think i understand.
Cornered beasts bite.
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Re: Ankylosing Spondylitis

Postby Brrrn » Fri Mar 30, 2012 5:44 am

Firejon,

I totally feel your pain, at least on the mental level. I myself have reactive arthritis, a form of spondylitis, and it really is a b**** and a half. My aches and pains are enough, but I can't imagine the fused spine which I have yet to experience.

Keeping a stiff upper lip throughout life is tough even without physical health problems, but can be impossible with them, so while I know none of this is easy, my only advice would be to be gentle with yourself. Stress can only make our condition worse, so try not to create more for yourself by setting difficult goals considering the fact that the condition itself is already stressful enough. While I know you want to get back to work, you need to concentrate on what you can do and relish in those accomplishments which will hopefully build into more along the way.

If you haven't seen it already, there is an excellent resource at the Spondylitis Association of America (whether you're in the US or not). They have an active forum where you can connect with other patients.

I wish you the best of luck and I would leave you with again, be gentle with yourself.

Take care
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Re: Ankylosing Spondylitis

Postby UpDownAround » Sat Jun 17, 2017 10:50 pm

I am a candidate for AS due to family history and the HLA B27 antigen, but have been fortunate, sort of. I have very little disc material left in the lumbar region and spinal stenosis. All that showed up in an MRI last year; I had an old one that showed one herniated disc and the back doc said it didn't add up for the pain I was in last year and ordered the new one. No fusion and I am old enough that it is unlikely.

But I do get something that may be reactive/Reiters. I get symmetric flares in knuckles, wrists, elbows, shoulders, hips, knees, ankles and base of the toes. I don't get red angry inflammation, though. It's weird when you go in with arthritis and they ask about unprotected sex, but I guess chlamydia is a common cause. More likely some gut virus, but they really didn't figure it out. It goes away, though then it is just osteo and bursitis that comes and goes but not everywhere at once.
Up and down
And in the end it's only round and round

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bipolar II, hyperacusis, substance use disorder
lamictal, straterra, saphris
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Re: Ankylosing Spondylitis

Postby Survivor8484 » Mon Jan 22, 2018 5:03 am

I have something like undifferentiated mixed connective tissue disease and ONLY a Fibromyalgia diagnosis. I filed for disablility and it's hard. I'm in my mid-forties and I have 3 college degrees, I totally understand.
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