Can't sleep, pain, bored, part 1 (Ankylosing Spondylitis)

Thought I would talk a little, and read my disability forms.. how exciting.
Anyone else with Ankylosing spondylitis. Give me a video back. And.... hang in there.

Category:

Education

Tags:

• ankylosing
• spondylitis
• pain
• sleep
• can't
• bored

[Surf2130]

hey everyone! Sorry it has been a while since I have been on here. People are asking me what medications I take. As of To date, I'm on REMICADE,METHADONE,OXYCODONE,P­OT, and stretching. I'm a sever case of AS. some don't even know they have it untill in their 40s or 50s.

[Surf2130]

You say you have had surg for AS?? I was told this wont matter as the bones will just continue to fuse. Have you tried Remicade??? It's pretty good stuff, and seem to slow down, stop the fusion process. With there was more I can do, I'll pray for ya.

Ty

[HIIOkopf]

I hope, you feel better now.

I surch for a Diagnosis, the last 2 Jears.

It is probable Morbus Bechterew, ist the

same only anouther Name.

[Surf2130]

Ya.. It's pretty much the same thing. I think. Your right.. just another name..  Hang in there, and be strong.

[bobbbob22u]

Hi there, ive got the same thing, im 33 now, wheelchair etc, cant move head bla bla bal. Anyway, what i really want to ask is have you experimented with ur diet, i left it too late, but have found that cirtain foods can triger large reactions for me personally, if u want to talk about diet then id be happy to let you know what ive learned.

Yours

Bob

[Surf2130]

I have read that certain food effect the AS. I have been on the diet for some time now. Don't really see a huge difference, but.. oh well. I'm sorry you have ended up in a wheelchair. they tell me, I'll prob be the same, as I'm alreading starting to fuse as 26 years old. I'm now 28 and can't work at all. well.. take some photos here and there and sell em.. lol... Stay in there bud.

[nashar65]

u have to ignore pain and force the joint to move and have to take medicine in the beginning when the max possible movement is restored and u continue regular exercise pain will go to 5 %, i do not take food in night to sleep in prone condition (on the stomach) i take like one sandwich & acup of tea at 6pm only.

[nashar65]

I was diagnosed a.s. 9 years back, firstly i was treated with Nsaids and exercises then started reducing so medicines were also redced now i take etoricoxib 60mg in the night sometimes. In morning i take powder almond (7 or8) and mix with a glass of water and raisins (which has seeds,big one, 7 pieces) empty stomach then for one hoir i dont take anything.doctor adviced me to sleep on stomach hands beside me. i am 95% fine now. i go to gym i am fine.

[lilmisschachty]

i also was diagnosed with a.s..... im going through a hard time as of now.... feel very unsure/disconnected..... ive looked for a.s. locations and there is no locations in minnesota, i guess ive looked for someone to connect with threw this time that close..... i would post a video but i dont know what i would even say..... but hang in there and hope the best for you!

[MrHodo123]

move to aus

[AaronSehlin]

My spine is completely fused and now its moving into my neck also I was diagnosed with hypothyroidism and the state refuses me disability but I'm fighting they also will not give me any pain meds I was told that its not a treatment for AS. I am however , at times in excruciating pain that stops me dead in my tracks. I cannot drive a car and I drop dishes alot when I get attacks! this is a horrible disease I can't believe the grief I get from so many health care professionals!

[AaronSehlin]

My spine is completely fused and now its moving into my neck also Iwas diagnosed with hypothyroidism and the state refuses me disability but I'm fighting they also will not give me any pain meds I was told that its not a treatment for AS. I am however , at times in excruciating pain that stops me dead in my tracks. I cannot drive a car and I drop dishes alot when I get attacks! this is a horrible disease I can't believe the grief I get from so many health care professionals!

[BrutusGumdrop]

I know this is video is a few years old, it personally got to me and I just wanted to see if you had any updates on either how you are doing or your struggle with disability. After 3 years in pain I just recieved a dx of AS. And from the sounds of a lot of other people stories I was lucky to get it that soon. I struggle with the pain and walk with a cain. for those who say "get over it"... it is different for everyone. Physically not just mentally. Malinger is someone who is faking.

[Bristolbrave]

I ve got similar symptoms to yours. Sulfazine and antibiotics (azythromycin) in conjucton with Fluconazole worked wonders. I stay clear of starches. Klebsiella is the organism of concern for you. Check it out. You can get better. kickas.org.

Good luck. ps steroids like prednisone will make you worse in the long run.

[chickenvirus]

You need to get on remicade or humiera they changed my life and I'm in the same boat