Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Now i know what to do here are my details

Firstly I would like to say how nice it is to discuss problems with people who are experiencing the same problems as myself and know exactly what you mean.

My name is Lorraine I am 41 and live in the UK have been married for 22 years with 2 children aged 16 and 18 the younger of the two having special needs.

I have been diagnosed for 3 yrs after having problems for sometime I am having a bad flare up at the moment aching just about everywhere the worst being my feet and hands. My hands are getting me quite agitated as when I knock them they are so painful just for a few seconds then it stops but its everyday, I get lots of cramp, painful and swollen feet and lots of numbness which none seems to have answers for. My rheumy wants me to have a MRI scan but I just can't face it. Im seeing nurse soon to sort out about going onto Sulfasalizine and I am also on a arthritis reasearch program so will be monitered every year. Iam wondering what the future holds for me never knowing what is going to ache next If anybody has any ideas would love to hear from you.

Lorraine, welcome to KA!

Hugs,

Hi Loraine, welcome
I'm 50 and have had AS for over 30 years. The way I look at it is you never know what is next and I deal with it one day at a time. Knowing that things flare up and go down, good days and bad, I just look forward to the good days. The different joints? Everyone here knows what I call it, the "joint of the month club"
Basically everyone deals with this desease differently and that's one nice thing about the kickas family. No one will ever judge you or tell you how to deal with it. We are all here to help and support, lend a virtual shoulder, give information, and share experiences. I hope this website helps you as much as it has helped me. This family has literally saved my life. I hope you come back often
Cindy

Hi Lorraine

I want to welcome you to our kickAS family. There are so many helpful and understanding friends here. They are there when you need a shoulder to cry on, and help guide you when you feel you really have no where else to turn.

As for your MRI scan you can always ask for Ativan (a very good friend when you are claustrophobic). I have had 6 MRIs. There was no way I was getting into that machine without my friend Ativan. (I felt no pain for six hours - I was a very happy camper.)

Gerri

WELCOME, Lorraine:

I've had AS for 35 years now, and never had the hand complications you describe. You should be able to locate Carol Sinclair's book easily there, and it is certainly necessary to get out of inflammation without taking drugs that can make us much worse, long-term.

I would be concerned about a complication from polyarthritis or Rheumatoid Arthritis and you may have some results treating your condition like the reactive arthritis that causes AS.

Please check out the NSD Forum and look for the rough self-test for candidiasis (also, there are questionaires on the internet; are you a female? Have you taken steroids? etc etc). I will repost there or find it for you if you cannot find it right away.

If you decide to take the sulfasalazine, be certain to use only the enteric-coated variety (Azulfidine-EN in US; Salazopyrin-EC in UK...I think). Remember to supplement with 1mg folic acid daily and it is not difficult to stay out of direct sunlight for the next several months (I stop taking the SZ during summer).

THE FUTURE depends entirely upon YOU, and I wish you a very good one,
John

Hello Gerri,

Thank you for the welcome, its nice to know there is help and support out there. Its also good to know there are people who know exactly how you feel. Glad I found this site

Thank you for the welcome, its nice to know there is help and support out there. Its also good to know there are people who know exactly how you feel. Glad I found this site

Don't get lost now
Come back and talk. Let us know how you are doing.
Cindy

Hi Lorraine!

Welcome! I too have problems with ankles & feet. Also my thumbs & wrists. It really ruins any moment when I bump them or someone else does. It hurts SOOOOOOOO bad! Alot of times I have to hold back crying or crying out.

At times it can be a real roller coaster ride except you don't get that exciting feeling in your stomach on the way down! Hang in there!

My advice is to take 'One Day at a Time'. I have a tendency to group all my problems into one big pile & then stand there saying, "Oh, Crap!!!" I pray-a Lot!

Take Care.
Peace, Tammy