Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm new here and could really use some support

Hello Kristy,

Welcome to kickAS.

As for losing your energy and full charged assault on your AS, my advice is dont' worry. I found over the years that best way to go at your AS is sorta cyclical. I get bursts of enrgy where I am on the attack and exercising and correcting my diet and doing all that I can and then other phases where I may 'cause some pains by not paying attentio at all.

I think it works though becaus eit gives me a reprieve from being an AS sufferer when I'm ignoring my woes. You can wear down if you fight to hard and all the time. Nothing wrong even in the early stages of being diagnosed to just get back to life as normal and disregard your AS a bit.

Its a long battle no sense throwing all your best punches in the first round.

 
stevec-they also serve who stand and wait

Hi Kirsty,

Welcome to group! Sorry to hear about your diagnosis, but at least you have one that fits the symptons and that helps heaps.

It's a funny condition. Fatigue and desponancy are important things to watch out for. As the condition advances things can happen real quick. The key seems to be stay as active as you can when you can and adjust the exercise to your overall state.

As this disease is a musclar skeletal condition alot of the activity occurs around when tendons liaments etc so low impact exercise is better. Repetitivie strain and strain injuries happen real quick. Often doing speific intensive repetitive exercise actually causes problems. Variety is the spice here.

Sometimes though the fatigue/despondancy is a reaction to overdoing it and learning to recognise this helps with the management so pacing yourself is important. Often I've found it to be the first sign of inflammation happening somewhere!

Personally I think alot of the despondancy is the body reacting to the condition. Alot of more longer lasting injuries to tendon insertions cartilidge and disks etc have occured when I'm like that and I've tried to push through it with over-exercise.

Another cause, NSAIDs do that to me, they make me feel hot as well and an odd prickley sensation.

Alot of people hear have had problems with nsaids and some research reckons that if there's another underlying problem such as inflammatory bowel disease, and there often is in theis family of arthrirtis then nsiads can accelerate the disease or trigger the Gastro symptons. I add this for awareness, not to scare you off nsaids because if you can tolerate them they are beneficial. I wish I could take them as opposed to the steroids.

There's heaps of things you can do to help yourself, as important as the right amount of exercise and the meds is eliminating aggravating factor. I found years ago that cutting certain foods, helped. Just so happens that they were all on the high starch list, that's how I found KickAS.

Take Care and hope things go well for you

David

Welcome to KICKAS.

What you are going through we have all been through.

As to the exercise, find a Sport/Exercise that you enjoy (Golf/Tennis/Yoga/Tia Chi), any will do, but obviously the ones with more range of movement is better. Try making the Sport/Exercises a socializing exercise as well, ie do you have friends that can join you.

Since you are close to other KICKAS members, see if you can make a meeting with a few of them. It is always great to meet other people in the same situation and share experiences.

Check out the other forums, especially the NSD No Starch Diet Forum, many people have posted great success on the NSD. You will find a lot of information on AS in this site and alot of supportive people.

If you have any questions, post them up and you will be surprised at the amount of replies.

Take Care
Wayne

Hi Kristy, found your first post!
check out the Alternative section and the NSD section here, you can motivate yourself to aleviate AS symptoms and slow or stop the progression of it...we have much to share here, and someone will answer you when you need it!! Diet and supplements can help, and even eliminate the need for NSAIDs...

Peace
Linc

Linc O'Brien

Hi Kristy!

I'm sorry you have AS but I'm happy you found us! I was 20 when I first got sick so I can understand how you feel, being young and having a chronic illness to deal with. I also understand how dealing with small children can be challenging when you are tired and in pain. However having kids was a positive thing for me. I gained a lot of strength from them, they kept my mind off me and focused on them, they also made me laugh .

Try not to be too hard on yourself when you can’t keep to your routine. One thing this disease loves to do is keep us off balance. Not exactly a good thing when one is trying to be organized and productive. I have had many moments over the decades of learning to let go of my usual time frames. I have had to be more flexible and spontanious. It is hard to plan ahead when I don’t know how I will feel from day to day. I guess the older I get the less I worry about it.

Yup, AS is a roller coaster ride at times. Hang in there Kristy you have just found many people who understand and can offer wonderful help and support.

peace & love
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

Hi Kristy

Hope your feeling better already!

For me it has been diet (thanks to KickAS) that has changed my life and given me a positive outlook. I have been able to give up taking NSAIDs altogether and am feeling more positive all the time. I can't recommend it (NSD/LSD) enough.

Best of luck

Jez

Gosh, you sound like we share the same body, I also have had AS for years, and my poor feet are a mess! One foot (the left) is actually fused between the ankle and the heel, and my toes are heading east when my heel is listing west. Makes buying shoes a real hassle, they simply don't make shoes to fit feet like mine. Luckily I live in Florida and so wear sandals most of the year. My SIs are now fused, my lumbar spine is squishing down and have some nerve damage now, numb soles of both feet and numb right thigh, and no reflexes in either leg. They can pound that rubber hammer all they want, the feet won't jump. Due to peripheral damage I also have a DX of RA. Not sure if I actually have RA as well as AS, but the docs keep the DX active because it gives me a fast track to the new DMARDS that of course have not been approved for AS, only RA. I'm on a good one now, has relieved just about all symptoms, don't take pain pills any more and an NSAID only once in a blue moon, usually from overexercising. I swim daily and that helps to keep me feeling limber and to keep my weight down. Also work out with hand weights and Pilates bands three times a week.

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't care how much money you make

I have found alot of really cool helpful people here.

I think we all feel a little afraid of our AS, i know i do. When i feel helpless i come and read the posts, sometimes i sit here and cry as i read, sometimes i laugh my AS off, but whether it be crying or laughing i end up feeling better after leaving here.
I have come here and asked questions i could never ask anywhere, so fire away.
hopefully someone will help you out also.

Cheers!

Hi Kristy,

Welcome to KA!!!!
Your state of mind is still fresh in my memory. I was diagnosed in Aug 2002. I don't think it's possible to overcome this disease, you only get used to the idea. I wish I could sit with you and have a chat. You are lucky in the fact that there are other people close to you who you can talk to. Fighting the fears alone is scary and very hard, and it gets harder when you have to explain to others what the problem is. For me talking about it for the first year was the trigger to fall into depression - sometimes so bad that reasons for living hastely dissapears from my point of view.

The first real improvement came after starting on the NSD. It's only when you get the first possitive results that you start to think that maybe there is a way to survive your own thoughts.
I have to admit that when I started the NSD, there were so many things that I love which I couldn't consume any more, but since feeling the improvement, you start to care less about the foods that cause pain.

My opinion is that you can be lucky you had children before being diagnosed, otherwise it may be a difficult decision to make. I am certainly struggling with that very same decision!

My dad taught my that 2 wrongs doesn't make a right. So to be negative about a negative thing is not going to make it possitive. It may go againts our logical, mathematical reasoning, but life is not maths.
Sometimes it will seem as if this thing drags you down, and it does!
I geuss what I am trying to say is that you have to make a decision about life. You cannot make it go away, but you can make life bearable to a certain extent, but to do it you have to face reality. Sit down in quiet place, where no one will disturb you, with all the information you can find about the condition and read it over and over. Think about it, cry about it and be angry about it, but most of all, talk about it - to yourself. It helped me in the sence that I could get to a point where I could talk to other people about it without bursting into tears.
First think of all the negative aspects, all the things that you will not be able to do ever again, the things you enjoyed and now have to say good-bye to.
Then think about what's left. You wil amazed by how many things are left. (but that's only after you had some improvement - in the heat of the condition nothing seems worth it anymore)
Sometimes you have to take a step back in order to go forward.

I wish you the best. Probably the most important part - and also the part least addressed by a doc or rheumy - is to get your mind right.

Life is too short to bother wasting your time and energy on something you cannot change.

God bless

Rinus

Hello Kristy,

Just wanted to welcome you to the site.





Michelle
'Being deeply loved by someone gives you strength; loving someone deeply gives you courage.' --Lao Tzu