Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group going crazy!

hi my name is Cam. i was diagnosed with AS when i was 18. i am now 20. As has completely changed my life! i used to be happy, energetic and active person. now i am just so overwhelmed. at times i get really depressed. i have no time for anything anymore. if i am not working im making food i can eat (NSD). i am having so much trouble getting my diet right. i am so alone in this battle! i have know one who understands what i am going threw. my doctors just want to prescribe me meds. i will not take prescriptions. i do not want to be dependent on medication. i act like i am fine to my family and everyone around me because they just don't get it. but inside it is killing me mentally an physically! i am going crazy trying to perfect the NSD i don't know what supliments to take. sifting threw all the info on the internet is driving me crazy. i never payed attention in school and just squeaked by. im not good at extracting info from things, im just simply going crazy. there are so many thing i feel i cant do now that i have AS and i fear for the future!

thanks for reading my rant or whatever u want to call it lol. sorry for any spelling or grammar mistakes!

hi cam,
i cant offer you any advise, as i have only just been disgnosed myself and finding it all overwhelming also.

i can only offer uderstanding and a huge hug.
typing bad as i had carpul tunnel op 3 days ago
you have come to the right place for advice and understanding here, welcome
all the best

Hey Cam, I so sorry to hear how you are feeling...it sux. My hubby Jon has been where you are. He got AS at age 27.

With regard to getting started on the NSD this link may help: NSD Food Guide as can getting your hands on a copy of Carol Sinclair's book The IBS Low Starch Diet (she has IBS and AS). It does take time to get it sorted - a couple of months at least.

There is no harm in taking some meds if you need them while you wait to get the diet thing sorted. Jon was on NSAIDs (anti-inflammatory pain killers) for the 1st 9 months on the diet. As he made gradual improvement on the diet we was able to wean himself off them.

Please don't worry about supplements for now as it can just confuse the issue with many esp in tablet form being starchy. I would just get the diet sorted 1st give it a couple of months then maybe introduce a few supplements. Altho I have to say in my opinion with a hubby who has been on the NSD for 7 years he doesn't seem to need supplements as his diet is very healthy...but I digress.

Get your hands on some iodine from the pharmacy so you can test food for starch. Don't get the color free iodine as it doesn't work...needs to be the amber colored stuff.

Also, please don't worry about cutting out diary and sugar as you may have heard some others mention over in the NSD forum here. At this stage I would advise just strict NO starch for a few months and wait for improvement before you go cutting out other things as it probably won't be necessary.

All the best, come over into the NSD and diet related forum and feel free to post any diet questions you have. We will try and help out best we can.

Chin up mate

Just saying welcome and goo dluck with the NSD. Lots of folks here have had luck with it and if you can't perfect it maybe there is a med that is ok for you. I don't take any unless in a enormously bad way so you can use them wisely without them being a problem. Hopefully though the NSD will be your way to deal with this.

Hey Cam,

Hang in there, you've found a good place for help and advice. I echo Chelsea's advice regarding the NSD: keep it simple. I read Carol Sinclair's book when I was first starting and it was very helpful. Iodine is required as well.

In general if you stick to whole foods that you prepare yourself then you should be fine. Just stick to meat, fish, eggs, and safe fruits, nuts, and veggies. Stay away from all processed foods and don't worry about vitamins for a while until you've gotten really comfortable with the diet. Refer to that list constantly until you feel comfortable with making food choices.

And if the pain is too much at times then don't be afraid to use your prescribed meds to get you over the hump. God knows there's no reason to suffer just so you can fight the good fight. I don't react well to meds but did take them in my early days on the NSD.

Stick around here at KA when you need support. Don't bottle up your pain and frustration- maybe suggest to family members that they read a few of the stories here on KA to understand what you're going through. But the truth is that this disease can make many of us feel very isolated- thus the absolute beauty of a forum like this.

Glad you found us and hope you stick around and find some relief.

Cam You can have a great life with AS . Dont give up on the diet and one thing you have going for you is your youth , I am 45 and have had AS for many yrs. I have three dauters and a wonderful wife. In my early yrs with AS i to did not want to take meds but could no longer take the pain . Had i known about the diet back then i would have been doing it be glad you found this place to learn from and Know that you are not alone. Welcome Kurt

Cam, I don't know what meds your Dr. has prescribed for you, but not taking them is risking that you will be totally disabled in the future. The NSD does not work for everyone. Probably less then half the people can make it work for them. It is good to give it a try, but you should be following your Rheumy's instructions while trying the diet. If you do not follow your Dr. orders, he can fire you as a patient and it will be noted on all you records that you "failed to comply with instructions".

I don't want to sound harsh, but you are at the age where your AS can be very aggressive and you can find yourself fusing quickly. As you read through the folders, see how many people here are fused or are living on pain meds. If you start taking one of the TNF blockers now, you can prevent or at least slow down the inflammation that can cause so much damage.

You do need to do range of motion exercises and stretches everyday to keep your joints and muscles moving.

Hey Cam,

Feels good to rant now and again. Regarding meds, I took azulfadine for 6 years prior to diet with good results. May not want to discount all the meds quite yet.

First objective should be to live life and if diet is depressing you, maybe take a step back for a minute. You have a lot of life ahead of you.

May want to combine your approach in fighting this.

Also if you have questions on diet, head over to Diet forum.

Take care and hang in there,

Tim

Can you provide a link to where you got this statistic from? I would like to read more about that.

hi and welcome

when i am in great pain, i'm like "give me any drug you've got."

when i'm feeling better, i want to do it with exercise, diet, supplements, and physical modalities like ice and heat and ultrasound.

what my doctors and i have done thus far is sort of a compromise in between.

my advice to you would be to find a rheumatologist who you can have a good relationship with. one who you can work with as a team, to find what works best for you to minimize your pain.

then maybe also build a team of doctors to help manage your symptoms. drugs aren't the only answers. but sometimes the right med can go a long way.

while i'm on 8 different supplements, i'm also on a muscle relaxant, LDN, and wear a flector patch over my SI. i'm on the LSD, walk almost every day, ice is my best friend, and i have a home ultrasound machine. i also saw a PT for years and now see a chiro who does many of the same things for me.

not to say these are the things that will help you, but just to show there are many ways to approach the problem.

the first few years, my body was such a mess; this all came on so fast. i never would have improved without the help of a wonderful PT and wonderful physiatrist.

it took me a while to find a good rheumy, but now feel i have one. he is trying to help me find something to prevent the flares or at least get through them better.