Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group pain, pain, pain, PAIN!

Went to my school formal dinner (the equivilant of prom in America I guess ) and I have come back in TERRIBLE pain. I put it down to all the starch that I ate, but I left feeling shocking. How do you guys cope with it? It just seems to be a gradual decline in health and it sucks! I really want to be healthy and well so that I can do everything I want to do in life but it really looks like I'm heading in the wrong direction. What can I do? I can conceal pain pretty well around friends but I cannot imagine being crippled and hunched over in the future. I would rather not be alive than see myself in a state like that and that is a scary thought. Is it all doom and gloom for us ASers? I think it may be time to go on a strict NSD or attempt biological medicines...

someone on this site has a legend at the bottom of their signature, a quote from Winston Churchill.........



"When you are going through hell, keep going..!"


That is the usual choice for we with AS, Seb. It is hell, usually hell all of the time, your only choice is, keep going. You will have good times and achieve all you want, just keep going

First, as I have learned I can bear far more than I ever thought I could, so take it slow because we are all much tougher than we ever imagined.

Second and more importantly, you don't have to just bear it. If the pain is driving you to change how you attack your AS then change your plan and try the things that you think will be most effective. You may have more success than you imagined too.

It is NOT all doom and gloom for AS'ers. I got it bad and got it young. Was fused and on my way to being bent before 20. The choices you have now weren't there for me then but my life is still great despite the successes AS has had. You have better choices and are not fused the way I am, you will succeed. You may intermittently have to redefine success, but fight like hell to keep all the health you have today.

Be well.

Pains character building some one once told me.. Reckon I'm at 20 stories high by now....
Have been no starch for 2 weeks nd feel pretty dam good.. Keep trying different things...
It's worth it
Julian

Im fused, hunched, and crippled and am very happy to be alive. Im in my 30's and am by no means am ready to pack it in. My ancestors that made me, that also had the disease must have suffered such horrible fate's. I know I got it easy compared to them. Imagine having this disease 500 B.C.. Always try to be positive.

Seb, do you have a rheumatologist you see regularly? If not, then its probably going to be a really good idea to get your GP to refer you to someone. You should be able to talk about the options for treatment and management of pain both for now and for the future.

If you are still feeling alone in this, try contacting the NZ arthritis and rheumatism society and see if they have a support group for young people. Even if you meet up with others with RA or lupus and not AS, it would at least give you a group of people you could meet with face to face and talk about things.

Ending up really sore after a good night out eating loads of starch isn't a gradual decline - its a totally expected reaction! Its not going to stay like that for you, and you will gradually learn for yourself when you want to avoid suffering and when you are prepared to go out, enjoy and take the consequences for the next few days.

Seb, It's not all gloom and doom: you listed two of your options for AS: strict NSD and biologics. Few people with AS end up in the state to which you referred: genetics, disease severity, and age of onset have a lot to do with it. We also have many more medications available now, with more on the way. Life will never be easy for you, but you can do a lot to manage the disease and pain (diet, exercise, therapy, medications). AS can get you down, but don't let it defeat you.

Oh boy, do I understand where your minds at. But like ineptwill said "when your going through hell keep on going"..You have this site to help you get back on track or just for support.

As gbash said "Life will never be easy for you, but you can do a lot to manage the disease and pain (diet, exercise, therapy, medications). AS can get you down, but don't let it defeat you."

And as I always tell my son the Glass is half full. Never half empty. Though you may feel that way some times. It can be just mind over matter.

I've been in pain for well over 3.5 yrs not realizing I had options until I stumbled across a Kick-as'r message on another site. I've done the cleanse, I'm almost a week NSD and I feel right at this moment 90% pain free. I'll take it.

Don't look at this as what you can't have look at all the things you can have. When you know eating something makes you feel unwell, avoid it for now and maybe in time you can add it back like so many others..hang in there.

Thanks alot everyone,

It does make you feel better reading supportive comments like these. Seeing as I have just finished school and have a long summer break, I think it is a good time to try the diet again or different medication..

Just wanted to ask another question that may not be easily answerable. I think a week or so ago, I posted here about TMJ problems. I have had them on and off for a couple of years and have never really seen it as a big deal, until it starts to affect my ears. I am pretty sure that my ear pain has to be related to TMJ issues as my doctor says my ears are completely fine. I hope I am just overreacting because music is such a big deal for me. Making music has to be one of my favourite hobbies and I cannot imagine losing my hearing.

I guess on a positive note, my ear pain seems to have decreased over time, so I'm hoping that this is only temporary?

I'm not usually this negative, just going through a rough patch. Thanks for all the help, very much appreciated.

so sorry, seb!