Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group introduction

I'm new and wanted to introduce myself. Even after just a few minutes browsing you all have helped me quite a bit. My name is Mary and I have had PA for 13 years, AS for 5. Am currently in the worst flare for a long time, despite Enbrel and MTX. I am a minister, and this is no time for me to be laid up. Spent most of the day in bed. I loved the heat/ice discussion. I find ice best for feet and ankles, but heat for back and neck.
Looking forward to meeting you and welcome any inquiries. I am definitely of the "use it or lose it" mentality, so this enforced bed time is hard to take. My doc insisted, though, for at least a day or so. Any helpful pointers? I keep getting up to stretch and try to gently move everything so it won't stiffen up. Blessings to all, and a pain-free week-end.


MaryD

Mary,

Welcome to KickAS, you have a very positive attitude, certainly you need one with this condition. whilst I'm not a religous sort, this is one big test and I am lucky I only have a mild disease.

Be interested how long you have been on the enbrel/mtx combination, and if it has helped.

Have you tried any diets? I know for the strain I have the low starch/no starch helps heaps, although now not as effective as it was.

David

Hi Mary,
Welcome to Kick AS. I hope that you are feeling better soon, disappointing for you to be missing your easter work.
Best wishes for a speedy end to your flare and a peaceful and safe easter,
Debra.

Welcome to Kickas Mary,

Great site to learn about AS, share/receive support and laugh a little. You are correct that staying active helps with holding off the fusion. I stretch twice a day to help combat.

Take care,

Tim

Hope is only a post away with KickAS.

Hi Mary

Welcome to KA, and a whole new family.

It is kinda quiet here on weekends, but on Monday, you should get a lot more responses.

I hope that you are feeling better by tomorrow and can particapate in all the Easter activities.

Lori

to KICKAS.

The most important tip you already have, a positive attitude.

I am sorry to hear that Enbrel is not helping, have a look at Remicade/Humira/Arava.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
https://www.kickas.org/as_dietary_primer.shtml
https://www.kickas.org/asfood.shtml
No Starch Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=drugs

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
https://www.kickas.org/images/medical pictures/uveitis.jpg
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=159642&Search=true&Forum=All_Forums&Words=wayne&Match=Username&Searchpage=0&Limit=25&Old=allposts&Main=159581
https://www.kickas.org/guide.shtml
This link also descibes the link between IBD (GI) and AS.
http://www.emedicine.com/oph/topic721.htm
http://www.medicinenet.com/Ankylosing_Spondylitis/article.htm

Also if you go back to the main page https://www.kickas.org you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=humor

Sorry for all the reading material.
Take Care
Wayne

Hi Mary.... and Welcome to KA!

When I find myself in one of those over-the-top kind of flares that my regular meds can't manage or even touch...
then that is the only time I find bedrest for a few days may prove helpful. If I'm not in the worst of states then bedrest
can wreak havoc.

It seems even the smallest of movements involved in daily functioning can escalate the inflamation to new highs.
It is the ball in motion concept that suggests some times we need to stop the ball from rolling first, before we can
hope to change it's direction. I can only remember 2 times in my past where my doc said bedrest was going to be
the strategy that helped,... and he was right!

I hope you'll have the same experience and will get back to feeling better soon.
Take care,

mig

Welcome to KAS, a wonderful place to meet nice, knowledgable and concerned
people, and a place to get all your questions answered.

Good Luck,

Maxine

"Mike's Mom"

Welcome Mary, you have come to a great site. We are all here to help each other. Here you will find some great people.

Rick

Hello MaryD, and welcome,

I am glad that you have found KA. It is great. I am sorry to hear that you are in such a bad flare, and it is effecting you so much. That is terrible when AS makes it so that you not only have to deal with so much pain, but when it effects the rest of your life so much. I will PM you when I have more time with some tips that I have found to be helpful. I hope that you like it here and find the support and information that you need.

Take care and I hope that this finds you well.

Daniel

http://www.Power-Over-Pain.org
"NEVER DOUBT THAT A SMALL GROUP OF THOUGHTFUL, COMMITTED CITIZENS CAN CHANGE THE WORLD" Margaret Mead