Beating AS feels really good
Posted , 3 users are following.
I like many of the AS folks have suffered for a long time.
I was that 30 year old young man that walked like he wass 80.
Couldnt no sleep without pain and could barely turn my neck or lift anything.
I have been on lots of combination of drugs so far but out of all of them Embrel and Indomethacin has worked for me untill I decided to change.
I got tired of Taking the shot and Taking Indomethacin. Embrel is amazing but it doesn't seem to work 100% of the time. Every 3-4 days i would flare up and feel tired, stiff and pain all over.
I have been embrel and indomethacin free for 4 months now.
I know it doesn't seem long but 4 months of constant improvement to me is amazing and i have to share.
To give you an idea of how well i feel today, I carried my 8 month old big boy (23lbs =) ) up diamond head with no rest, no pain, and no soreness after the hike and the days after.
I've done lots of research and found that many people improve from just changing their diet and that what i did and to add i'm enjoying what i eat.
There are so many options out there if you just look beyond just american food.
Basically I do low glutten, low dairy and low starch.
one of the exceptions for me is white jasmine rice, it seems to digest with no problems.
you can buy lots of vegetables at the korean market for your side dishes with rice. There are tons of other things i can eat with no flare ups.
Indian Curry etc.....
Bottom line, there is hope guys.
In just 4 months
95% of my pain is gone
My jaws and shoulders dont lock up anymore
90% of my fatigue is gone
no headaches, stomach aches
I still have a stiff neck but i'm slowly getting my mobility on my neck
back everyday from doing Neck mobilization exercises.
This part sounds a little dangerous but My wife and i watch
Bodyology Massage ( Neck Mobilization ) videos on youtube
and just took it easy and streached every day by copying what they do.
Pain free will come soon for me =)
I do belive
0 likes, 3 replies
TreatMeGently Sddsxxs
Posted
I am 48 - I went gluten and corn free 100% when I was 26 years old - even gave up corn syrup, barley, lager, beer, Guiness, whisky etc.
Ups and downs but basically like you I have beaten my AS - having gone from a limp and sore hips at age 25 to running half marathons at 30. I used to drive long distances and get a locked / fused and sore sternum... But now I don't. Also like you was able to carry each of my children up Goat Fell in Arun in a Papouse - and found it beneficial rather than inflammatory.
intestinal permeability is one of he factors in this disease and many drugs including NSAID, methotrexate exacerbate rather than heal the gut issues.
Cheers (with a cider or glass of wine!)
Tigger_the_Wing Sddsxxs
Posted
I had a brief remission in my late twenties, also did hill-walking with a kid on my back (even went around London with one on my back, one on my front, and one in a pushchair!) then went downhill to the point that I was having to use a wheelchair in my early-mid thirties. Then I had another remission in my mid-late thirties, following the birth of my twins (a 'cure' my GP joked he couldn't recommend to everyone!), and going completely gluten-free (I've now been GF for 20 years); and for the next ten years I kept the increasing inflammation under control with occasional five-day courses of diclofenac (about five times a year). I was working as a taxi-driver until 2000, then moved to Ireland and was building a house!
To cut a long story short, I had a heart attack in Australia in 2006, was diagnosed with atrial fibrillation and Prinzmetal's angina and put on coumadin. I couldn't take the diclofenac any more (risk of internal bleeding) and that was the end of the remission. After nearly three years, seeing how bad I was getting, my GP put me on aspirin instead of coumadin so I could go back on diclofenac, and also put me on prednisone, but it was too late to stop me ending up with permanent damage to my joints. I was tentatively diagnosed with Ehlers-Danlos syndrome by my GP last year, and it was confirmed by a rheumatologist this year.
This July I had to give up all medication (except my heart meds) when I got drug-induced hepatitis and non-alcoholic fatty liver disease. Now the pain is back with a vengeance, and I can't do anything for it.
I'm trying to keep fit as best I can, because it helps the joints if my muscles are strong. I joined a wind band and play percussion, mostly timpani. Great fun, gives me some exercise and socialisation.
I cannot manage my wheelchair by myself, because of the uneven surfaces and the pain in all my arm joints, so I use an electric scooter when I'm out; but that doesn't really help me keep fit, except mentally, because I hate being totally dependent on other people for getting around. Plus I mount quints on the front when the band is marching, so I can join in!
Anyway, loving cycling (one of the few forms of exercise I can still do), but not having much balance (or stamina) any more, I have ordered a recumbent tricycle, with an electric motor. I can't wait for it to arrive (sometime around the end of November)! I'll be able to keep my leg muscles strong and use the motor as a 'hill-flattener', reducing the strain on my heart and joints.
The picture is me in this year's Paddy's Day parade.
Sddsxxs Tigger_the_Wing
Posted