Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How many of you.

Drew, I'm glad you asked the question because I've been wondering the same thing since I first started reading about remissions in here. Of course, some days are better than others but there hasn't been a day since I got sick that I'm not in pain...the only times I've not felt the pain are when I'm asleep or drunk. lol

I'm hoping that a remission will come along someday sooner than later but I'm not going to count on it. Sure would be nice to stand up straight and walk normally again - I think I'll go out and climb a mountain on that day (just in case it comes back the next day).

My heart sank out of my chest when I read what you wrote about seeing the world. I realized how lucky I am to have only become sick on the threshold of forty (I think this is the first time I've ever described getting sick as "lucky") but then I read some of the other posts. People who have dealt with this disease longer than both of us combined have made it a priority to carry on and live as normal a life as possible, including travel.

I must admit, it seems impossible to me right now but I find those words encouraging and I hope you will too.

Best of luck fella

Hi John, were you working when you fasted for 20 days? If so, how did you manage that? No probs doing the 3 day fast over a weekend but not sure I could accomplish an extended fast while working...needing some stamina and ability to think clearly. Also, as you can see by my pic there's just a few ounces to spare so I believe 20 days would leave me with skeletal remains Thanks for the reminder though, apples are in season and it's time to do another 3-day.

Hi Drew,
I'm not exactly sure of what the true meaning of remission is, so I have often wondered about this too. I have been pain free several times before, but I was taking medications. This year I had 3 weeks of being pain free, with no outside help from taking any meds or supplements for the first time. The AS is back again but holding steady with low pain levels. Most of my AS experience has been painful though. My shoulders hurt more now from the rains, but I'm not counting that because it's due to the weather.

take care,
James.

Hey, snowshoe:


Yes, I was working a very stressful job, but I was also younger back then and just got out of a relationship, so the usual social pressures were a bit rearranged. After four days, it is pretty much downhill except for the other people in our lives...

I fasted many times for shorter periods after that, but 20-1/2 days is maximum. Hope I can do forty some day--I need to do that right now in fact!

Regards,
John

Hey Drew,

I have not been one of the lucky ones to experience the remission cycle. Hopefully you find something that will work for you and help you get into remission.

Sarah

Hi Drew

Cant say that I have had any sort of remission. Maybe a 'good' week perhaps, but nothing longer that would make me forget there was a problem!

Amber_UK

Aww Drew, I hate when AS hits so young. Reading your post made me feel so fortunate, but hopefully I can offer some hope. 6 years ago, I was pretty much bedridden. Now, I'm happy to say that I have been experiencing the most awesome remission for about 6 months! No meds, just exercise and a sweet blessing from God! I still have to be careful about injuring myself because injury + bedrest = stiffness and then I'm right back where I started. Everyone is different, but for me the best thing is staying active and staying away from pills with evil side effects!
It sounds to me like you may have had a remission once before, so maybe there will be more in your future. This isn't my first remission, but this one has lasted longer than the others. That's why this is my first post in a very long time...I'm on the move!

Hi Drew

You need to know your limits, when you are out and start to hurt go home, overdoing it will more than likely cause a flare. find out if you have any other conditions that are complicating the treatment of your AS like fibromyalgia, chronic pain syndrome or depression. Make sure that you eat a good diet and get enough sleep, I had early onset of AS. When I turned 34 I have been in constant pain 24/7. I wish more than anything that I could be normal again, it has taken along time for me to accept that I am disabled becasue of it and I hate it> My doctor wrote me a letter for disability but I can't get it here in the states(i am a brit living in the USA) becasue I haven't worked.
Anways please don't think that it is the end of the world, everyone is different with this disease, its unique to you, so you could have a remission, I had one for 5 years. My onset was 15. at 22 I had 5 years of hardly any pain. so you never know mate.

well take care.

Mel
ps I have a son who's onset was 10.

Hi Drew,
It's a permanent thing for me. Pain every day for the last 4 years, diagnosed 2 years ago, but I can think back to childhood when sport etc was always impossible. I couldn't understand how other people could be so flexible!

Hi Drew;
I'm one of the lucky ones who had a remission . . . in high school. It was great. After 4 years of active pain I had no flares for about 4 years, and though I still had pain, it was more like a normal arthritis-type pain . . . my knees would ache after a hike, but I didn't have any pain that I didn't "Earn".
I'm sort of in a med-induced remission now . . . the med is low dose naltrexone, or LDN. Look it up, it's awesome. Read my "went to the Fair" post . . . I haven't had a spontaneous flare since I've been on it . . . I can feel it holding the flares at bay, and the only times I've flared have been when I miss a dose during a stressful/flare-inducing time (and one that was caused by my pregnant tummy suddenly sending me off balance during our monsoon season . . . that's the only flare I've had that I didn't miss a dose).
In all truth: remissions are very, very rare, and even when you're in one, you'll probably still hurt every day, you just won't flare.

Best,
Bridget