Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Any life tips for newly diagnosed?

Hi all, I was fairly recently diagnosed with AS this past June. I was diagnosed right on the heels of battling cancer. After 3 months of seeing a pain management doctor, he conceded it may be autoimmune and referred me to a rheumatologist. After blood, X-ray and MRI, she concluded I had AS. I have been doing physical therapy 3 times a week since June.

It has been a hard adjust for me to live with, what for me has been a constant debilitating pain. I am currently 28, and have always lived an active lifestyle. I played sports, then was a touring musician until the time of my cancer diagnosis. I struggle just to play fetch with my standard poodles anymore. Does anyone have any helpful tips for pain management, or dealing with the other issues that come with AS?

Hi John, hope you're feeling better today. I was diagnosed with AS almost a year ago, and all I can say is that at first I felt like there was nothing I could do to feel better. I would have tons of bad days, followed by one or two semi good days. Then I found this site and I started changing my lifestyle little by little. Diet is so important, going on the NSD has really changed my perspective on this disease. You learn about the importance of good nutrition and its effects on the body. I would start by avoiding starch and sticking to a paleo diet. Then I found yoga, which is an amazing way to stretch, get a workout and mentally balance yourself. U really need to listen to your body and find those things that make you feel better and which things to avoid. Stress is a major issue here, so try to manage your stress levels with yoga and other supplements. I highly recommend you to try curcumin capsules, BettyRawker recommended them to me. Omega 3 capsules, Vitamin D, and Vitamin C are the supplements I take, all testes with iodine. Food combination is also really important, like eating fruit alone never with carbs or protein. I also did the 3 apple fast and it helped a lot. Things like that really help. Hope you find this useful. Take care and hope you feel better.

It took me a dozen years to be diagnosed and treated, so I had to learn a bunch of coping mechanisms, like the PT. Also the exercise, ice, heat, only sitting in certain chairs, only laying in really good beds, only certain pillows, always rubber flip flops in the shower to protect my feet from flaring, etc etc.

But if they had put me on Humira years ago, maybe I wouldn't need so many coping mechanisms. Still, they are good to have. I kind of do it all now.

I also use prednisone when I flare, but the rheumy said that would probably become less often the longer I'm on Humira.

I think if you find the right treatment, there are fewer life tips that one needs.

I still work hard at it, but the Humira helps me not have to work as hard at it.

Thanks for the advice. Unfortunately things like humira aren't an option for me because of the side effect possibility of cancer. Since I have already had cancer, my rheumatologist advised my chances of relapsing are far greater.

exercise exercise exercise.....

john=
Hi welcome
fast then add the hardest apples you can for a few days.

no starch, until you can track what makes you flare....exercise as much as often as you can

laugh and be thankful......

I am trying to manage this disease as well, but for me what has helped the most is stress reduction, paleo/NSD diet, having a positive outlook, daily walking/stretching, and nsaids (I am trying to get to a point where I don't need them but for now they help a lot). I also like reading inspirational books, 2 ones that helped me are "dying to be me" by Anita moorjani and "how to be sick" by Toni Bernhardt.

I'm sorry to hear about your cancer on top of this illness. I hope you go into remission form both of those illnesses!

Hey John,

I feel for you man! Battling cancer and AS at such a young age must be a daunting challenge. May I ask how your cancer is now? You said you were on the heels of it so I assume you are all clear? I really hope that is not a problem for you anymore.

Seeing as the doctors have ruled out Anti-TNF's (Humira, Enbrel etc), I would really look at your diet. It can do wonders for you I promise. There is so much information on this site about the low starch diet. Diet can change your life. I havn't been so lucky with diet so far, or any type of medication but I believe I am in the minority.

As for coping mechanisms. Try to stay active if possible. Always look at your posture. Make sure you are standing and sitting upright because this could help prevent stooping if you are to fuse (which is unlikely if you find good treatment that works for you). It is not an easy disease to deal with in many cases, but it is certainly not the worst in the world so try to look on the positive side. I use music as a way to escape from the pain. I struggle to sit down at school for more than 30-40 minutes and often struggle to get through a 3 hour day. However when I am making music at home, it takes me out of the pain. I often kneel by my keyboard/computer at home and switch the position I am sitting in frequently but when I get in the zone I completely forget about everything. It is the best medicine for me. I know it is a long shot as few people make it, but I dream of being able to produce music for a living as I often wonder how I will cope with working a full time job. Sitting for extended periods has been a big problem for me.

I am a completely normal looking guy even though I have had AS for 5-6 years. My posture is very good. I'm not sure what the future holds but I focus on controlling what I can. For me that is stretching and exercising (walking and occasionally swimming) everyday, taking my medication (despite not seeing too many benefits), eating a low starch diet and taking fish oil tablets. I have quite a lot of bad days but I also have good and great days. I take it one day at a time and generally live a good life.

I'm not sure if any of this helps but just know that you're not alone!

Good luck mate.

Hi John - welcome

A suggestion - get your dog standard Poodle registered as a medical Alert service dog. I would be totally and completely lost without my Makaylah (medical alert service dog - brown standard poodle).

The poodle is very smart and loves to learn - she even teaches me a few things. She taught me how to use my cane to get her ball out from under a coffee table. She picks up all her toys - she can help me undress. I locked myself out of apt. one day and she was able to get the door open (she was on the other side of door).

She helps me socialize as I tend to hide from people otherwise. She is very funny and makes me laugh. I am unable to have meds because of allergies. If I am focusing on her I don't think of the pain so much.

Hugs
Gerri & Makaylah

Thanks for the advice. My cancer is in remission as of December of last year. I was put on Cymbalta for a couple of months, but it caused these crazy mood swings and depression so I was taken off of it.

One of my standard poodles is already registered as a service dog for myself and my wife. He started as a seizure alert dog, but is really helpful in getting around. The other isn't registered but has learned from him. They help me up and down the stairs all the time.

My wife and I have started moving towards gluten free for myself and for her Lupus and Hashimoto's disease. I also was prescribed a Tens Unit for home use on my back along with Percocet.