Ask me Questions about my Ankylosing Spondylitis, Telling about my pains. 09

Letting people who have been wondering about the pains I have with my AS.

Category:

Education

Tags:

• Ankylosing Spondylitis
• Update
• Pain
• Questions

[Surf2130]

@cainede Do you wake every morning with What feels like knifes in your stomach?

[maus1025]

Get off the meds and get moving. Movement helps more than the meds. I stare at the ground mine has gotten so bad, but no meds. I'm going to keep moving and beat this thing. Beer helps me through the bad days, but I still work everyday. Not looking to get on disability. Once you get on it, you will become disabled. Grow a pair and realize that you ain't the only one with AS.

[jsteck1956]

Hey Tylar watched your vid's for first time tonight, and it was great just hearing your voice and seeing your face again. Sorry I missed ya on my last trip to Cal. I'm now seeing new doc here in Texas so makes it somewhat easier. Hope all is well, and message me on facebook when you get a chance.

Jerry

[Crackles666]

It's HLA-B27 gene, surprised how many people state this wrong...pays to research.

[mcmedley789]

in the beggining did they say if you had the gene HL 57. I think thats it. the doctors said thats what predisposed me to ankylosing spondylitis. I got it at a young age 14 years old they want to put me on so many different meds which ones helped you the most.

[medicinesocks]

thanks for this, we're grateful fo space to share how it feels to live with pain 24/7. i'm 57, AS & fibro i'm told, misdiagnosed for so many years it wasn't fun or funny. over time I've pretty much stopped opting for meds, pharmaceutical approaches never did work well for me. weighing risks vs benefits the risks are no longer worth it in my case, but i don't mean to cast aspersions on anyone who's found something they can take that's helping. hang in, life's still sweet, go easy on yourself.

[medicinesocks]

@smo200 i don't carry the genetic marker but the rest of my blood work and an mri made the rheumatologist decide that what i have going on is AS. i've complained of some random scary pains not in my spine which he thinks is fibromyalgia. i don't find diagnoses and labels all that helpful. pills neither. NSAIDs did awful things to me and i've never been able to take anything narcotic without throwing up. i've often wondered if a better bed might help some. stress management helps, pace yourself.

[medicinesocks]

@cainede hi, just have to smile, only 3 AM here, but I can relate. if I had realised how hard it would be to be a mom with AS, I may not have opted to become a parent, but the kids happened anyway and I'm not at all sorry. They turned out to be lovely people! Too, distraction, for one thing, is a tried and true strategy for pain management that works for me, since pills of any 'script' just have never really helped at all-- kids have been a compelling, major distraction from the pain.

[rockcityaudio]

Hi,I went to see a Buddhist healer,they don't charge fees you can just give a donation if you want.Look them up.bodybuddha.co.uk. youtube.com/watch?v=NZodjSlfon­Q

they helped me!.good luck.

[cainede]

@rockcityaudio I get horrible stomach issues and have uveitis also. I am female 37, and have had AS for about 12 years. What meds have you tried? Are any meds making a difference for you? It is incredibly lonely being the only one (besides dr.s ) that know what this disease is and how it feels. Write back if you wanna chat about it. Jen Caine