Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm so freaken sad!

My worst nightmare has come true. The tears are rolling down. I'm taking care of my 89 year old mom. I used to come here a lot when my husband was first diagnosed. He was around 35ish. I worried and I worried and yes my 17 year old son has it. My oldest 22 year old son is okay. I have no one to talk to. He came home from school and he is in bed with pain and I am crying my eyes out. My husband said we should hurry and get life insurance ( a month or so ago) and we started that but we are at a point where it has to be done now because once they know, you are screwed. If I could and I wish I could, I would take that pain and suffer. I dont think I have ever been this sad in my whole life. Sorry....just saying.

Wow I just noticed I first came here in 2001. 15 years ago, when husband was 41.

Are you okay? Sad to hear this. Did your son just get diagnosed?

I was diagnosed at a very similar age to him. Has he been to see a specialist?

Things will get better, I'm sure they will.

I wish I could give some more advice but I know there are many people here who are better at that than me.

Wishing all the best for you

Hi Leanne,

Don't despair, what if I told you there is a cure for AS? It just simply requires healthy living (which is foreign to most people). I suffered with AS from the age of 19 till I was 37. However, at the age of 35 the pain got so bad I decided I would find a cure no matter what it took. I researched hundreds, perhaps thousands of hours. I cured the condition and have been pain free for nearly 5 yrs.

I explained the cause/cure on my previous post, hope it gives you some hope:

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=511233#Post511233

Many people are very proud in claiming there is no cure, however, they suffer from AS and I no longer do. Many think we are chemical factories and the only cure has to be a drug. However, God made us natural beings and the best cure is natural products. Obviously Big Pharma can't make money from natural cures, so this information is generally suppressed.

Hope this gives you some hope. I can't tell you how liberating it is for me to be able to do/eat whatever I like with absolutely no pain now. Saying that, I naturally desire a more healthy diet these days, mostly organic (although I had pizza a couple nights ago). I give all the praise the God for showing me the truth about health.

Cheers,
Andrew

I think that there is definitely a strong relationship between food and inflammation. Maybe you could look into a no starch diet Leanne?

I didn't respond too well to a no starch diet.. I found myself flaring to pretty much any food I ate, regardless of whether it had starch in it or not. I was literally eating food with 0 starch in it and still flaring so I realised this was not the path for me. I don't think it works for everyone but as many people have experienced, it can be amazing for treating this disease.

I am relatively new here, and I know everyone is pushing diets, however I think a real piece of mind is knowing that research has come so far, and when I was having problems sleeping last night I was reading medical papers and research notes and can see that we are heading towards better treatment options and it looks like people being diagnosed now have a brighter future than a lot of people who have been suffering for years, we might be lucky to see a cure as we are getting closer to understanding how many of these diseases are similar in cause and that we're advancing rapidly when it comes to a cure.

In 2009 I could hardly walk a 100 yards. I was looking forward to losing my job. Very bad time for me. Found this place, found hope. I saw that they were different avenues to take in treating this disease. I went strict NSD. It was not easy took a lot of time to get family and friends on board. Just spent yesterday riding mules and hiking around 10 thousand feet yesterday chasing my dogs around the mountain.
Dig your heels in your family can get a hold of this, just wish I had known about it when I was twenty might not have the lower back issues I have now.
Maybe there is no cure literally speaking but I have been in clinical (their term) remission for years. Some day it may get me but for now I enjoy every good day, looking back they are all good days.
Good luck,remember there is always someone on here to talk too they are family and a dang good one.
ETTE.
Darrel.

Try to stay positive. One thing for sure about this disease is that it is never the same for anyone, and there is a huge range of possible outcomes with it - my father had only occasional NSAIDs for treatment and managed to stay fit and active until he died (of a completely unrelated problem). I had some pretty bad flares in my teens, then almost forgot I had any kind of inflammatory arthritis (apart from the odd short flares) until I got to my late 40's, and I also have not had access to much in the way of treatment. Young folk getting diagnosed now do have access to a lot of different, and from all accounts very effective, treatments, and the options are increasingly all the time. Encourage your son to eat as well as he can, and to keep up stretching and flexibility, and low impact exercise - even when not feeling the best as moving is one of the best things you can do. If he is keen to try, get him some info about the low starch or no starch diet, but as Seb has said, it doesn't work for everyone. Its still worth a try though as it might just help. Also find your son a good rheumatologist now - even if he doesn't start any treatment immediately it will be worth it to have someone keeping an eye on his body.

Most importantly, do everything you can to lose that guilt of the disease being passed to your children - its not your fault. Even if you did help pass the gene on, just having the gene doesn't give you AS, there are a whole lot of other things in play. And if your son does have to be one of the unlucky ones to get AS, then at least he is lucky enough to have a mother and father who well and truly understand what it is like and can support him well.

I know you are upset now and that's a normal response when we first learn of something, but given time, we come to accept the information.

As others have said, we have come a long way. For me, and my aunt, getting a diagnosis was the long drawn out difficult part....going untreated was what caused us the most pain and disfunction.....we're both now on biologics and life is so so so much better. Biologics really have made a world of difference for so many of us.

Others on here have found that they can control their symptoms through diet.

I think hope is what gives one a peace of mind; right now you seem to have lost that, but I think that comes again with time.

My stepfather was diagnosed with crohns in 1987; he obviously had it for years before they discovered it. Back then they only had prednisone and that didn't control it enough and so he had surgery to remove the diseased tissue...most of his small intestine. Shortly after the surgery, Asacol became available and he's been on that ever since. Yes, he has flares, times he doesn't feel well....he has GI inflammation and joint inflammation (and eye inflammation) like so many do....but his flares are nothing like in the past....and he's lived a full good life for the last 30 years with crohns, with most of his small intestine removed, with Asacol and Questrin (due to lack of small intestine). He's been my role model in how to live with chronic illness.

Please don't give up hope. So much has changed in medicine since my stepfather was first diagnosed. And so often, getting diagnosed can take years and years and so we have to wait for treatment. Having a diagnosis will allow treatment now, and that can prevent a lot of the damage that occurs when treatment is delayed.