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

Can you tell us what you're eating?? Have you checked your vitamins and supplements with iodine?? I'm just throwing out suggestions. 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.

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.

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

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.

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

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

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.

Hi Joanne, how much vit C a day do you take???

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.

I'm only 90 days per calander year and I've used 49. Ill be going on Ltd if I go back off I'm afraid. I'mim desperately trying to make it till March because that's when my 401k becomes mine

Maybe you need a prednisone taper. Has the rheumy suggested anything? Maybe you need a new rheumy.

You should consider getting FrccMLA if you havent already gotten it. It can cover you somewhat & protect your job. It also validates that yes you do have an ongoing illness with flares & you may be out of work from time to time. You could have the greatest boss there is who says, 'dont worry about just feel better' but if hr gets involved it can get sketchy. Trust me, I was burned when I didnt have it at another job.

So, like I said, consider getting it if you dont already have it. It will help.

I too am starting to flare. Havent worked on the diet yet, but will work on it soon. Thats still new to me.

Good luck & I hope your flare fizzles out soon.

Take care,
Kirsty

The nurse called me today and put me on a predisone taper starting today through next week till she can talk to him on monday. He is also a professor in a masters program at a local state university and is only available a few days a week. I would consider another but there is only a handful in this area and he is the best there is.

They put me on "vacation" since I had 2 weeks built up so it doesnt have to go through the whole process. I need to get on that just in case as you suggested. I also am having severe muscle cramps when I flare. Is that normal for the rest of you?

Definitely look into FMLA. It covers you for 90 days on a specified illness/condition. You have to have held your job for a year and have the doctor fill out the papers. I couldn't get the rheumy to do it, but my pain management doc did. You can use FMLA a little bit at a time, too. You shouldn't have to use your vacation for an illness if it's covered by FMLA. I have 200hrs of vacation built up and still don't have to use it if my absence is covered by my FMLA.

HOpe the steroids help the flare.

When I flare the muscle cramps are crippling. I can be walking and they just floor me out of the blue. They are so bad that I start breathing like I am labor to get through it. I look strange when it happens because it could be the back on one side, the stomach on the other and then a leg cramp all at the same time. I try to stretch out all the different areas at once, well, I am sure you are getting quite the visual, like.. a reject from cirque de soleil? Quite the contortionist from it yes!

It takes me 5 minutes to walk 10 feet. I am not really exagerrating. Its the a.s. shuffle! Heh, sometimes I get asked if I am a patient if my badge isnt visible.

So, yep, muscle cramps are big and bad during a flare.

Kirsty

where are the muscle cramps? do you mean muscle spasms? not sure there is a difference anyway? are they in your low back? buttocks? in response to your inflamed SI? upper back and neck? calf cramps? foot cramps? those are the things i deal with. ice and heat help the muscle spasms in the neck/back/butt. i've found no good solution for the calf and foot cramps though there have been several good posts on here suggesting things like stretching, magnesium, etc.

They are in calf muscles, side, back, for arms, and biceps. All occur mainly on my right side...probably 90% of the time its the right side

The other thing was before the humira i was on 20mg of pred for 3.5 weeks roughly and it didnt kill the flare last time.the humira was my first bit of relief

Well day 2 of pred taper. I actually was able to get up out of bed unassisted this morning, take a shower on my own, wash and dry my own body with no assistance. I am still hurting but at least I can move a little. I've never felt as helpless in all my life as the past 7 days. Hopefully this is the last flare up for a while

Day 3 feeling good. Going to try going to work tomorrow and see how it goes.