Ankylosing Spondylitis Support Group
Ankylosing Spondylitis (AS) is a chronic form of arthritis--it is an inflammatory disease that causes joints, cartilage or other fibrous tissue (such as ligaments and tendons) to turn into bone. Ankylosing spondylitis is part of the group of rheumatic diseases. The disease is characterized by progressive stiffness, tenderness, and pain in joints. Pain can be episodic and...
my name is zenab and im 20 yrs old and i was diagnosed with anklosing spondylitis when i was 16, i live in london
lifes been really hard since having AS. ive been on and off college since being diagnosed and only been able to study for 1 full year. ive been off college since may 2007, i just cant cope with studying with this pain,
my AS has not really been controled since having it. ive been on every anti inflamtry out there thay alll helped but just not enoth. at the moment im on hydroxyclquine,naproxen,omeprozel,and tramadol for pain i have a lot of tramadol i have 2 tables 3 times a day as the pain is sooo bad everyday.
ive had sterolds a lot in tablets and injection forum,helped a bit with the swelling in my hands wrists.
my dr has never be great. not understanding at all. he wont put me on anything stronger,the next ones i should be on are the darmonds like methotrexate, sulfasalazine. ive seen 2 other drs to see if thay could give me what there ment to give and thay are friends with my dr so thay didnt wont to help me at all.
i had a ultrasound scan about 2 weeks ago of my wrists,hands, it shows the bones better then a xray it shows if theres changers in the bones.
ive had 3 bone scans and all of them show inflammtion in my spine,hands,wrists,nees,ankles everywhere.
my phiso was not great . just didnt understand what its like to be in pain,i didnt find phiso mcuh help at all and the hydro didnt help too ive also tryed accupunchr too but it didnt help.
lifes sooo hard i just have had enoth off this. i just dont know what to do anymore.
anyone got any advise, i would love to talk to others going throu what im going thou if anyone would like to chat my email is zenabshah@hotmail.com
ive made a lot of groups for young people with arthritis check them out i hope u all like them
http://www.facebook.com/friends/#/group.php?gid=20939036561
http://www.bebo.com/youngarthritisgroup
http://groups.myspace.com/youngpeoplewitharthritis
http://www.facebook.com/group.php?gid=20939036561
http://dailystrength.org/groups/youngpeoplewitharthritis
my name is zenab and im 20 yrs old and i was diagnosed with anklosing spondylitis its arthritis in the spine when i was 16. i live in london.
at the moment i am setting up a group in the london area for young people with arthritis and im trying to find people that would be interested in coming. but it depends on where you live.
i think we all can maybe go out samewhere and have our group and then another group we can find a room to have our group. ages 16 to 25 yrs old.
if anyone are interested in coming to my group please email me on zenabshah@hotmail.com
lifes been really hard since having AS. ive been on and off college since being diagnosed and only been able to study for 1 full year. ive been off college since may 2007, i just cant cope with studying with this pain,
my AS has not really been controled since having it. ive been on every anti inflamtry out there thay alll helped but just not enoth. at the moment im on hydroxyclquine,naproxen,omeprozel,and tramadol for pain i have a lot of tramadol i have 2 tables 3 times a day as the pain is sooo bad everyday.
ive had sterolds a lot in tablets and injection forum,helped a bit with the swelling in my hands wrists.
my dr has never be great. not understanding at all. he wont put me on anything stronger,the next ones i should be on are the darmonds like methotrexate, sulfasalazine. ive seen 2 other drs to see if thay could give me what there ment to give and thay are friends with my dr so thay didnt wont to help me at all.
i had a ultrasound scan about 2 weeks ago of my wrists,hands, it shows the bones better then a xray it shows if theres changers in the bones.
ive had 3 bone scans and all of them show inflammtion in my spine,hands,wrists,nees,ankles everywhere.
my phiso was not great . just didnt understand what its like to be in pain,i didnt find phiso mcuh help at all and the hydro didnt help too ive also tryed accupunchr too but it didnt help.
lifes sooo hard i just have had enoth off this. i just dont know what to do anymore.
anyone got any advise, i would love to talk to others going throu what im going thou if anyone would like to chat my email is zenabshah@hotmail.com
ive made a lot of groups for young people with arthritis check them out i hope u all like them
http://www.facebook.com/friends/#/group.php?gid=20939036561
http://www.bebo.com/youngarthritisgroup
http://groups.myspace.com/youngpeoplewitharthritis
http://www.facebook.com/group.php?gid=20939036561
http://dailystrength.org/groups/youngpeoplewitharthritis
my name is zenab and im 20 yrs old and i was diagnosed with anklosing spondylitis its arthritis in the spine when i was 16. i live in london.
at the moment i am setting up a group in the london area for young people with arthritis and im trying to find people that would be interested in coming. but it depends on where you live.
i think we all can maybe go out samewhere and have our group and then another group we can find a room to have our group. ages 16 to 25 yrs old.
if anyone are interested in coming to my group please email me on zenabshah@hotmail.com
One thing I am learning like you too, is it's pretty hard to "just get on with life" when you have this condition. I'm finding having access to good information about AS and gleaning the useful bits from what others say (who have AS) is making more of a difference, than just swallowing handfuls of pills to try and get some relief. I think your group will provide similar benefits for you all too. Good luck and good wishes.
You probably aren't aware of this yet, but you live in a place which has THE BEST support group in the world, NASS.
A few years ago, they had over 120 something chapters, with over 10-11,000 members. They have organized WEEKLY hydro/land group therapy/support group meetings, and were led by an amazing guy, who told me he was ready to retire after building it up over 3 decades! I spent a day with him at his home in the country, and NEVER enjoyed myself so much.
During that trip to your neck of the woods, I saw 2 rheumies, Dr Keat from Imperial College, and a now retired fellow who once headed the regional arthritis hospital in Bath.
They were so very helpful, BOTH stressed diet and exercise, not crazy about meds, ESPECIALLY not crazy about surgery!
I even had a chance to talk to Prof. Sir Maini, the Nobel Prize winner for his work on what became the anti-TNF blocker drugs, like remicade, enbrel, and humira.
I wanted to know EVERYTHING I could about this
insidious, chameleon-like illness!
Anyway, pls contact NASS, and I hope you REALLY get the results you are looking for, as quickly as you'd like them.
To me, you are too young to give in to the intimidation of pain/stress, seduction of becoming dependent on meds, that we spondylitics have to deal with.
PS, Once upon a time, I started the first support group in my state, gave it all up when over 75 people connected with me, found that our very weak "support group" in CA, was not so supportive, and that I, being an advanced spondylitic, had my own life to deal with, and was diagnosed as clinically depressed not long after giving it up. I fought my way off the mind drugs within 9 months, and started on the road which lead me to where I am now.
This is the first group I've spoken with in a number of years, and hope I don't sound too "know-it-all". I just have learned a great deal while fighting the fight!
Pls stay in touch.
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