So, where do I start? My name is Kenny I am 25 and I live in North Yorkshire, England.
Hi, I'm Kenny. I'm dashing and handsome. And modest!
Brian asked me to write something for this awesome site. I was pretty excited when he told me. But then I thought “People won’t read this!” but then I remembered how it felt for me when I found someone who had AS like me. It was pretty amazing as I had someone who knew how I felt when AS made things difficult.
To cut a long past very short I started suffering with back pain and stiffness, lack of control and movement in my legs. This went on for roughly 5 years and the hospital and specialists could not work out what was wrong. This all started when I was 18. I was told many things were the cause ranging from doing weight training exercise incorrectly to it being a psychological issue. Fact is I had Ankylosing Spondylitis and no-one could diagnose me.
After 4 years visiting the same hospital over and over seeing specialists and having MRI scans etc I decided to change my hospital. After all it took them 3 attempts to get an MRI scan of my lower back that they could work with. The first MRI scan was somehow lost; the second was of my upper back (not my pelvis) and the third time they hit jackpot and scanned by lower back but to no avail. They could not find anything wrong; they took blood tests and sent me on to the head physiotherapist who told me it was a psychological issue.
I trotted along to my new hospital and saw a trainee specialist, I thought “Great, a new hospital and I’m seeing a trainee!” It was approximately 20 minutes later and she was almost certain I had Ankylosing Spondylitis. I was amazed; I finally almost had an answer. This was then confirmed by a specialist and I am now on medication to help make it easier for me to keep active. After all keeping active is the key.
So to move on from the past I am now 25 years old and I have plenty of hobbies to keep me busy! I play paintball most weekends whether its training or tournament paintball. I also enjoy mountain biking and with living in North Yorkshire I have plenty of hills to be hitting at the weekend. I have just started snowboarding. Now that I have some medication to help keep AS controllable I can exercise to keep on top of it. I have always wanted to give snowboarding ago and now I finally feel like I can start to live properly again. It’s going to be cool! Will keep you posted on how it goes.
If you want to post questions, fire away. I will update this on how I feel, what I am up to and it will almost be like a diary on how I am doing with regards to Ankylosing Spondylitis.
***Response to Karaleigh and Mark***
Alright guys! Karaleigh, Mark thank you very much for your posts! Right first off, Karaleigh – I do my best NOT to let AS stand in the way. I am a typical bloke who does not like to be beaten whether its playing paintball or on the xbox! So I do my best to stay active. Before I started having issues with my back (Before I knew what AS was) I was extremely fit. I was preparing to join the Royal Marines Commandos here in England and constantly training. I was always very active. Now I live my life with a consideration for AS. I don’t suffer AS, AS suffers from Kenny because I must annoy ‘it’ because I am constantly doing what I can to beat it. Don’t get me wrong, there are days where I think “Ok, I will take today easy”. So although I am active and force myself through exercise sometimes you do have to just sit back and get through the grind. Medication – I currently take Tramdol (A Pain killer) and Arcoxia which is a NSAID. Side effects from the Tramadol were initially bad skin rashes and terrible itching. I seem to have got past that but now I do have pretty bad mood swings. Luckily for me I have a beautiful and understanding Fiancée! I am currently going through the process of trying to qualify for a better medication like Humira.
Mark! How you doing? Good work with finding a decent Dr! Keep us posted on your progress here at Joinedagainst.org! We love to hear from other super humans!
My questions for you both! If you could choose 2 parts of your body where the pain is most severe what are they? My legs and buttocks were terrible about 4 years ago, now it’s pretty much JUST my right side ribs!
Thank you so very much for posting your story. I just turned 26 and sometimes you feel alone in the world with such a disability at such a young age. It is inspirational to see someone with the same diagnosis so active, not letting AS stand in your way. Are there still days that your AS does stand in your way? Did it take many medications to find the right combination for you? Do you have side effects from these medications?
I know that I have days that my AS does stand in my way, no matter what I want to do there is just no way. Additionally it has taken a year and a half to find the correct group of medications that do not have horrific side effects yet manage my symptoms. Prior to that I had everything from a skin rash to pancreatitis, IBS and even an ulcer.
I wish you the best of luck and a long life of health.
Hi ,your story is amazing man.i was lucky to find a doc that believed in me and eventhough MRI’s etc werent proof for awhile ,i have been diagnosed for 2 years.I can barely get out of bed some mornings ,still tweeking meds,painmeds make life torrible and i keep them in check . Mobic is a great NSAID vs celebrex ,and i am hoping to try methotrexate soon.I did find that myheart has been affected ,go for echo on Monday.I already have some valve issues so i think they were early signs of AS and nooone put it together.
I wish you great success,
Mark O.
I am a 44 yr old woman with AS. I have been able to shut the disease down by following a low starch diet. It is the London AS diet found on KIckAS.org. As long as I follow this diet, I have a 90% reduction in pain and stiffness.
Brilliant post Doreen and I had actually heard about this and mentioned it to Mr Warner! I will investigate!