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#415963 10/15/10 02:52 AM
Joined: Oct 2010
Posts: 253
Brandon Offline OP
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Well this is day 8 of nothing but pure pain. My rheumy is at a loss as to why its gotten so bad. I am hoping it is a flare up. I am still on the NSD, tried apples as well, now on 300mg of tramadol extended release. I have missed 4 days of work and am afraid I will have to go back on Short term disability if this keeps up. I can't stand more than 15-30min and sitting and laying is just a relief till i have to shift.Anyone else have flair ups like this that last this long? I am starting to get worried its not going to let up


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
Brandon #415980 10/15/10 05:16 AM
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Can you tell us what you're eating?? Have you checked your vitamins and supplements with iodine?? I'm just throwing out suggestions. smile Have you tried taking lactose and sugar (even fruit) out of your diet too?? It could be Candidiasis causing the flare, too.

When my eating is good and then I feel good, then try to do sooo many things that I couldn't do last week, I bring on a flare. Lots of sleep, and minimizing stress help take down a non food-induced flare for me.

Good luck. Keep us posted on how you feel.

-Donette

p.s. My electric blanket feels heavenly when I'm hurting.


Brandon #415994 10/15/10 07:04 AM
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i have had long flares and in the middle of them it is easy to convince oneself that they will never end, but thus far, they always have. wish i had a full proof game plan for a flare, but each one is always a bit different, so its more like hang on for the ride and try all the things that have helped in the past, and when that doesn't help, try something brand new; being here always gives me new ideas. hope yours doesn't last too much longer. heart



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Sue22 #416032 10/15/10 12:07 PM
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Brandon

When I am certain I have not eaten starch, lactose or sucrose and I begin to feel unwell I assume it is Candidiasis and immediately cut back on fructose and most other carbs too for about a week. I occasionally water fast too. Then when the coast is clear I reintroduce what I call safe carbs like herbs, green leafy vegetables nuts and seeds. Only when I know I am fine with these will I then consider anything else

This has worked for me. Not one single flare in 9 weeks.

I need to tell you I am not diagnosed yet, MY GP suspects I have AS, and I suspect I have a reative form of Arthritis, just not sure which one. I am seeing a new Rhumatologist in December so might know more then. But if you want to know anything else about how I am avoiding the flares, that previously I had for 20 years, feel free to send me a PM

Love Joanne

Last edited by joannesford; 10/15/10 12:09 PM.

My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
joannesford #416057 10/15/10 04:06 PM
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Brandon Offline OP
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I have been just eating some steak, eggs, lettuce, and onions. Nothing too crazy and even small amounts as i don't feel like eating alot because i hurt so bad. This morning was the worst I have ever been. I literally could not make it up out of bed on my own. My wife had to pull me and help me through the house to the couch. My job has agreed to put me on vacation till i get past it but I just don't know what has brought it on. Outside stiffness and pain levels I have felt better now than I have in a long time. The diet has been a tremendous help for my ibs/colitis and don't look back but so far whatever is going on is crippling me today. I called my rheumatologist and he was out to lunch. Soon as he gets back he is suppose to call me. Thank you for giving me hope that this ends. Ive never felt so much pain so sharply in all my life.


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
Brandon #416062 10/15/10 06:09 PM
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Your food seems safe. Could you possibly have the flu or another illness? I have noticed that when I get sick with AS, it is a whole different ball game. I don't get sick anymore, since taking LDN, but it seemed like my immune went into over drive to fight off a cold etc, and my AS got worse during the illness.

I thought of something else that can help take down a flare: vitamin C. Lots of it. I got this idea from the Dr. Yourself website. Plus, a guy wrote a book about how he put AS into remission with lots of vitamin C and laughter. He was taking IV vit C therapy, up to 100,000 mg per day. Put it completely into remission.

The most vit C I worked up to in a day was 18,000 mg. The worst thing that can happen is diahrea. Diahrea means you have reached a top saturation point for vitamin C, ie: the most your gut can hold and use at one point. That won't happen if you split up the doses, like take 1000 every hour, for example. Also if administered by IV, there is no risk of diahrea.

Good luck to you.

-Donette


Donette #416070 10/15/10 08:26 PM
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Donnette

I take plenty of vitamin C and I split it up every hour like you have just said, mainly because I think it helps my immune system, but I did not know it can stop flares. This is great to know, perhaps that is another reason why I am not having them now

thank you for sharing this,

Kind regards

Joanne


My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
joannesford #416084 10/15/10 11:38 PM
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Sorry, our power went out for 4 hours. I was going to tell you the name of that book is "Anatomy of an Illness" by Norman Cousins. It was in the 60's(approx) he got soooo sick with AS, and his Dr's had honestly told him to give up, that he would soon die. He ditched the gloomy hospital for a lush hotel room (cheaper than the hospital). He had a Dr./Friend that he trusted set him up with the IV therapy, and he watched funny movies. He got better and better, eventually went into remission. Several years later he saw the Dr. that told him to lay down and die and needless to say, Cousins was healthy and the Dr. was chagrined. There, now you don't have to buy the book like I did. It is an interesting read though.


joannesford #416085 10/15/10 11:39 PM
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Hi Joanne, how much vit C a day do you take???


Brandon #416089 10/16/10 12:58 AM
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Originally Posted By: Brandon
Well this is day 8 of nothing but pure pain. My rheumy is at a loss as to why its gotten so bad. I am hoping it is a flare up. I am still on the NSD, tried apples as well, now on 300mg of tramadol extended release. I have missed 4 days of work and am afraid I will have to go back on Short term disability if this keeps up. I can't stand more than 15-30min and sitting and laying is just a relief till i have to shift.Anyone else have flair ups like this that last this long? I am starting to get worried its not going to let up


Be sure to double check your insurance regarding short term disability because there are some out there that limit you to using that option but once per calender year.

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