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marinemamma

Looking for people who can relate to AS

Posted by @marinemamma in Bones, Joints & Muscles, Apr 12, 2012

I am a 41 year old woman who is suffering from AS, I have no one to talk to about this (other than my rumatologist) and would love to chat with ppl who can relate to all of the changes happening.

momofsixsmallsmiles

Posted by @momofsixsmallsmiles, May 5, 2012

Hi! I am also living w AS - over a decade now. Is your dx new?

joanneo

Posted by @joanneo, May 5, 2012

I am so sorry but what is as

momofsixsmallsmiles

Posted by @momofsixsmallsmiles, May 6, 2012

Hi, no apologies - we're the ones talking in code 😉 It stands for ankylosing spondylitis which is an inflammatory arthritis/ autoimmune disease.

1bbygyrll

Posted by @1bbygyrll, Jul 7, 2012

Hey- I know its been a while since ur post... But I am hopeful that u can shed some lite on the subject of AS, your symptoms & how u got diagnosed. I ask because I am 37 yr old female who's been in&outta Dr offices since as far back as I can remember for (mainly) left sided pain issues (that are now seeming to move into my right side).... Had Xrays, MRIs, &a CT that- showed (among other 'minor' things') "sacriolitis(?)" in left lower back/hip... Was told to see yet another Dr for this... But- frankly, I cant really afford another Dr bill that ends in "possible fibromyalgia" (which I don't much believe in)... Googling "sacriolitis" tho- brought me to AS and- am amazed to see that this could explain everything- from the excruciating pain to the eye & intestinal issues Ive been also experiencing....
Sorry for the "book"- I'm just so frustrated w/ the pain & have (sadly) become rather skeptical of doctors and their actual 'desire' to find the problem for me:/
Does any of this seem familiar?
Thanx for ur time;)- any suggestions would be greatly appreciated:)))

rosestea

Posted by @rosestea, Jul 28, 2012

Well...I am sorry to say that AS is one of the hardest bone diseases to diagnose. I was miss diagnosed for 5 years. So far all of my family members with it have been diagosed wrong. Personally my pain started in the hip and SI area, my neck and fingers were stiff when I woke up. I have been on Enbrel injections for about 10 years, Methotrexate for about 4 years and an anti-inflammatory med. These have become an absolute need or I would not be able to walk. there is a blood test to check for inflamation. I hope some of this helps and I hope you get some answers.

zina

Posted by @zina, Dec 27, 2012

Hi,
Your Dr. can have a simple blood test to test for the HLA-B27 antigen. That should help with confirmation and not be too expensive.

rosestea

Posted by @rosestea, Jul 28, 2012

Hi, I am new so please bear with me:) I have been diagosed with AS for about 10 years now. My younger brother was diagosed first then me and now we believe my son has it as well. It is not fun but can be managed if caught in time. My brothers was not caught in time he is crippled from AS. I joined so I would have others who also have AS to talk too. So I hope this is the place.

zina

Posted by @zina, Oct 29, 2012

Have had AS since I was 13, now 48. If you would like to chat let me know.

laurenesquivel

Posted by @laurenesquivel, Dec 26, 2012

How do you control it???

zina

Posted by @zina, Dec 27, 2012

Lauren,
I've learned to live with a lot of pain. I exercise as much as I can. I've learned not to push anything too far. Some days exercise is very, very minimal; other days I will actually workout. Yoga or just stretching out is very helpful. My body tells me what I can do and I listen to it. I also try to eat right and try to maintain a healthy weight. Beyond that, I have had steroid injections but I do not like them. I am on a high daily dose of medication for pain. I also dislike it, but for now I am taking it. If I were not, I would not be able to walk or do much of anything. I do not like the options of the other medications that are out there to help. Maybe in the future, but they are not for me at this time in my life. I don't want to trade one problem for another and with the amount of side effects I think that's what I would be doing. The best advise I have is to not push yourself until you can't move. Let people know what is going on and that you "just can't do what you use to." Accept help if offered, and be sincerely thankful for it. Slowly change your lifestyle to fit your needs and possible needs in the future. Remember that the people around you may not understand and you can become the teacher. There are some good pamphlets available from the Spondylitis Association of America at there website (http://www.spondylitis.org) on living with AS and on AS in women. I carry them around and let people read them if they are interested. They are also very good for family members, Employers and co-workers, friends, etc. to read first; for the people who are nearest to you, that way they can start to understand what you are going through and give support to you instead of funny looks or remarks. I have three wonderful children who understand and help and support me too. I spend more time thinking about what I have accomplished so far and what I want to do that is truly important instead of trying to fit it all in before I die. It has helped reduce stress in my life which I believe was the biggest "no-no" for my condition. Be patient, smile and laugh, and try to find a way to get rid of the stress.

noramesfer

Posted by @noramesfer, Nov 4, 2012

I can relate. I am 22 and have AS. My family is trying to help but they just don't understand. So yes I can relate to you.

zina

Posted by @zina, Dec 27, 2012

Nora,
Try this website and maybe get there info sent to you.

http://www.spondylitis.org/about/as.aspx

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