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

Hello,
I found this site last night when I was googleing no starch diet. I had seen it before but didn't look carefully at the A.S. and thought you guys would kick as so I never looked at this site before. I belong to another one for A.S. but...

The first time I flared was when I was 13. I actually was hospitalized with abdominal pain and back pain. I remember laying there unable to move or turn over. Later I was diagnosed with IBS and the back pain was never dealt with. A car accident when I was 23 was what I blamed my relently neck pain on and my hip and back pain... Chiropractors, physical therapy, exercise, diet, etc.. etc.... have always been a part of my life.

So when I was diagnosed in March, it was because of an iritis flare, the second such flare in my life. The first time was when I was in my 30's and though a rheumatology workup was recommended, I didn't have the insurance to afford it. I thought then that I might have A.S. but wasn't sure. I quickly forgot about it til last year.

I thought I had a lot of crazy food allergies that made my joints swell... I thought it was MSG because when I would eat certain food I would seize up in my low back and hip and be unable to move in bed screaming in pain trying to roll over. Eliminating it from my diet helped emmensely. I also break out in hives when I have wine. Commercially prepared salad dressings also cause the severe pain. I now wonder if it was the MSG or starch or a combo of both... (not going to try MSG though to find out)I developed a lot of weird food phobias as a result of all my flares.

In the last few years I've been doing Atkins on and off just feeling that it agreed with me. It was alarming to me that I would get so much pain from going off of it. I also found myself depressed on it and having difficulty sleeping so I've been experimenting with other diets... the last one started at the beginning of November I did a 'reboot' (see movie Fat, sick and nearly dead on netflix)in which I consumed only fruits and veggies for 15 days... then I was supposed to add rice, legumes, etc... so as soon as I did I went into a flare. (I mistakenly thought I could quit the humira bc I was feeling so much better... Just restarted it after being off for 2 months. I also was trying to fulfill my fathers death bed wish that I stop taking it. Well, I did try. He died Sept 9th)

Anyways, so have been feeling like a total failure for being in so much pain despite the healthy eating regime that I have been on. And I didn't really get the NSD until last night when I read about it on this site so thank you for the explaination, stories of success, and now a little hope that I can make it out of this downward spiral I find myself in.

I'm very fortunate to be married to a wonderful man for the past 25 years. Our two children are grown, out of the house and productive members of society. I work nearly full time as a nurse but the job I have is actually a very good job for me in that there is not any lifting and I am up and down a lot changing possitions frequently which I think has helped me over the years.

My feet became extremely painful last summer and I was dx w plantar fascitis and my rheumy said it was part of the downward spiral to this (not so) fabulous disease. He insisted that I needed to start swimming. I started doing water aerobics in my pool everyday and before I knew it my friends wanted to join me so we started a group once a week. It was a blast. Unfortunately it is so cold now that I can't do it any more. I just joined my husbands gym and hope I can start going 4 times a week... I started walking again in October and now my feet are hurting again, plus my hip, knee and lower back... the pain has been very bad this past week. I took hydrocordone and flexeril a couple of times but I don't like it because I'm scared of becoming addicted AND it makes me sleep too long and I'm all groggy the next day.

A.S. is ruling my life right now... I hate it and I just want to kick it too.

Thanks for listening...
Lisa

Hi Lisa,
I to found this site by accident last week. Just trawling around reading posts and peoples stories has helped me immensely already. I thought It was just me!!! Cant give you any advice as a newby myself. I's just great to not be the "only one"

Julian

lots i could say, but for now, just wanted to say Hi!

and a comment about the muscle relaxants.
i tried flexeril; given to me by my GP.
a zombie marshmallow for a day or more from one pill.
could not function that way.

my physiatrist gave me a script for zanaflex instead.
i've taken that nightly (and as needed) since 2001.
it knocks me out for about an hour or two, but that's it.
lasts in the blood stream 6 hours, long enough to get some sleep.
but not feel groggy in the morning.

if i need it during the day (like for the dentist, scans, flying, etc), i time it so i can be groggy about an hour after taking it and then for about an hour or so after that. since many things are about an hour, it works out well. and the muscle relaxant affects last ~5-6 hours total.

when i needed it during the day when i first started it. i'd time it so i could nap at lunchtime and again at dinnertime and be alert the rest of the day.

i've been getting liver function tests since 2001 to make sure it didn't affect my liver. but i take a small dose (2 mg at a time) because it drops my BP pretty low, so don't think i could safely take more. that little bit doesn't seem to bother my liver. at first i got a liver function test after 1, 3, 6, 12 months, then it was ~ yearly.

i'm now also on magnesium, for my muscles. rheumy thought it might help. it does prevent the leg and foot cramps. but i still need my zanaflex.

Thanks Julian! Yes, it is a very informative site. Was feeling very hopeless before I found it. It is nice to read of some people having good success... but still it is a frustrating illness. Even if the NSD is successful, it's going to be a lot of work to maintain. I hate being on these meds! (humira)They are scary.
Lisa

Thanks Sue,
I hadn't heard of that medication before so will ask my rheumy for it tomorrow. He's going to be mad at me for stopping my humira.
I take Calcium and Magnesium too. It definately helps the leg cramps. Also Vita D, flaxseed capsules and now am adding fish oil (will take instead).
Thanks for saying hi!
Lisa

Welcome, Lisa.

I, too, suffer from PF and foot pain. It truly sucks. I've been down the road of many noninvasive treatments, but had surgery to release the fascia on both feet (2002 and 2005). That worked for a couple of years for the first foot and about a year on the 2nd. After a few more attempts to relieve it, the foot/ankle specialist referred me to rheumy. That netted me the inflammatory arthritis label, and 3 yrs later, foot pain is still a problem. Enbrel is making it a little better, so far. Maybe after a few more injections, it will be even more better...LOL.

Welcome and enjoy getting your feet wet here at KA.

Yup agree, dont like meds but havent been able to live well without them..
NSD now for 10 days must admit I have a wife who is prepared to go NSD with me (except for the regular double choc chip cookie) I find shopping in the supermarket depressing as there is so much on the isles you cant have.....

Welcome to KickAS, y'all. I used to take Enbrel, but that gave me a lot of nerve damage. After that and before NSD, I took prescription naproxen, which hurt my guts. I also took flexeril for my horrible rib spasms (intercostal neuralgia). I didn't like either, but I needed some relief. I also took sulfasalazine, but that also messed up my guts. NSD has been the only treatment that has worked effectively, if not perfectly. Once I finally found and removed all the hidden starch from my diet, my pain levels went down drastically. It takes a while to fully figure out NSD, but it's worth the effort.

--Greg

Hello Lisa,

Glad you found us and hopefully Kickas can help you in kicking AS.

Sounds like you have been through a lot like most here. Pray that you can find answers and things improve. If you have questions ask them, if you have diet questions you can ask them in that forum.

If you need support of time to vent... post and you will see members will respond in kind.

Best to you and take care,
Tim

Welcome and I honestly feel your pain!