Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello all

Hi all 😊 been lurking the site for about 6 weeks now finally joined, wanting to give you all my life story lol along with a few questions to see if anyone can point me in the right direction? Is there a specific place to do so?

WELCOME, AS_Jim:

You are welcome to post Your story on this Main Forum. Good alternative is dropbox link in Your signature.

Of course we like Success Stories posted on the NSD and Diet Forum.

Glad to have You on board,

HEALTH,
John

Thanks john, so roughly in 2008 I was diagnosed with reactive arthritis hlba27 + placed on sulphasalazine, mobic, and prednisone. My whole body was affected toes knees fingers although my back and hips were the worst. After 3 months off work I was able to finally get back to it I was still in pain but slowly and surely it went away and was able to stop all medication I don't remember exactly how long. I became a proud father of a baby girl in 2013 and was interested in body building so was in the gym 4 to 5 days a week, roughly 2014 I was beginning to bet a sore lower back and hip from time to time I thought it was either from the gym or maybe from carrying my daughter on one side of my body too much... Roughly 2015 my hip and lower back was starting to wake me up at night with a feeling like it was fused, I was in agony and would take painkillers to get back to sleep and was taking ibuprofen regularly. My gp at the time thought it was just from the gym and my job and that I needed to take it easy, I was seeing a physio and she was great I would get a lot of relief from the visits but the pain would always come back.... things remained like this for probably another year I was no longer doing deadlifts in the gym no leg presses or any awkward movements. Mid 2016 I was still having lower back pain although it was mainly on one side right or left I can't remember, my physio knew it wasn't my sciatic nerve and that it was my SI joints and thought it was from my work. I work as a glazier so it involves lifting wardrobe door panels or shower screen glass which at times can be heavy and because I am right handed everything gets carried on my right side. At this stage I would take ibuprofen or voltaren tablets daily along with anti inflammatory gel and would take mersyndol at night to get back to sleep.the start of this year I had a really bad flare up with my lower back and had quite a few days off work it was a struggle to do even the simplest of chores even putting shorts on after a shower was tough. I had changed GP's at this time and on a particular visit I stood up and lifted my shirt and pointed to my where the pain was the dr said that it was my SI joints and he suspected Sacroillitis I was sent for an MRI and this confirmed his thoughts.. I was referred to an rheumatologist and got an appointment in march,bye this time I had started having pain in between my shoulder blades also. After my meeting with the rheumatologist I was placed on sulphasalazine 2 500mg twice a day, mobic 15mg once daily they took some x rays of my hips and I was sent on my way to go back in three months.. So in the last 3 months my si joints and hips finally started to settle down which was a very nice relief, but I have started waking every single night between 1 and 3:30am with pain in the middle of my back that shoots around to my rib cage.. The best thing I have found to do is to move from my bed to the couch and try to sleep in an upright position it was on the couch about 5 weeks ago in pain and desperate I was looking through the net and found this site and was given some hope with the NO STARCH DIET that I started the very next day in hope...

The last 5 weeks I have basically eaten chicken, pork, beef, bacon, fish which is usually tuna or salmon from a can,eggs, broccoli lots of broccoli,tomatos,spinach avocados garlic, chili and jalapeños I have stoped sugar and dairy except for hard cheese, it has been one of the hardest things I've done but the thought of being pain free is worth it I drink apple cider vinegar daily and have started having extra virgin olive oil and evening primrose oil. I have stopped taking my mobic for about 3 weeks although my si joint the last couple of days has been feeling suspicious 😒 and I'm hoping that it's not a flare on the way I did have a fair few beers on the weekend so maybe that has contributed.. anyway sorry if I have rambled on or anything it's just been nice to finally find somewhere and know that I'm not alone and good to write this all down... thanks Jim..

You're definitely not alone and I hope you find the right remedy for you to get back to living a healthy life.

I saw where a major league player with the Dodgers went on the disabled list this week with AS. It would be interesting to know with all the trainers, doctors, and money at their disposal what their treatment plan will look like.

LA Times article

Hi Jim, thanks for sharing your story. What an ordeal - sleeping on the couch upright to get relief sounds just awful. It's amazing what we do to find a small comfort.

Sounds like you're off to a good start with the NSD. Well done, it's not an easy path. I'm still pretty new to it also and find the restrictions tough. But it's soooo worth it. Good luck!

Hey Kelly, no problem at all very happy to share my story so far thank you for reading it. I remember when I first found the site and reading other peoples story's and immediately identifying with some of there experiences. No the diet isn't easy lately I have been craving ravioli and spaghetti lol but it just isn't worth it and I am committed to giving it my all! Have you found relief through the diet?

Just wondering if people find frozen berries are ok on the no starch diet? And I have been drinking coconut water that has nothing added to it but adding some moccona instant coffee to it myself for a pick me up.. would this be ok or am I asking for trouble?

Hello AS_Jim - welcome to the KA family, glad you found us.

Well done on the dietary path. was wondering if might help to try cutting out beef and also bacon. Bacon due to the preservatives, nitrates etc and beef as for some it is an inflammatory food. Check out 'inflammatory foods' and also 'non-inflammatory foods'. Might just help in giving that extra kick off the playing field of pain ? Can try, and if works, do a re-challenge and if the pain comes back into field, then kick it out again. Hows-zat !

Let us know how you fare with this pain dodging - take care, go well - and glad to meet ya -

Molly C - Keeping on - Keeping on (as we all do)

Hi Molly, thank you for the welcome and reply no bacon and no beef ouch lol you kmow what I'm open to it and will give it a try! On my first meeting with the rheumatologist I remember asking about diet and he said this has nothing to do with diet, they are only to happy to give a script and send you on your way or so it seems.... my next visit is next Monday and I will be mentioning Allan Ebringer and Klebsiella though I know he won't show much interest. Recently been reading about TNF blockers, the side effects scare the hell out of me.