A.S. Face 0954: Bryan White

Face 954Bryan White

I am 39.  I have been living with AS since my early 20s but wasn’t diagnosed until about a year ago.  I always remember not walking correctly and feeling mechanical when playing football (soccer) as a kid.  On many occasions I felt exhausted as a young man walking around town, but felt better the further I walked and the more I did. The biggest two injuries I had and which may have made things as bad as they are now were when I dived off a high board and folded my legs behind me and really hurt my back as I hit the water.  Another time I tore the shoulder blade away at work and it took 3 years to heal.  I took ibuprofen for the last 17 years and now I have ulcerative colitis and meds for this mean I can’t take NSAIDs anymore so the pain is quite severe.  My wife and I suffered infertility combined with the health problems but we never gave up and following treatment we have little angel twin boys who are now 8 months old.  Having the boys has made the pain more bearable and I feel like we are lucky despite health problems I have.

I was given a different diagnosis for some years and for about ten years believed I had scoliosis but this was a misdiagnosis.  Maybe this is a normal path to diagnosis.  Like MS we get a lot of don’t knows before get the definitive diagnosis.

I have had to leave my job as a desk based computer engineer due to the AS.  I am not giving up and am now trying to start my own business buying and selling bric a brac.  I have experienced such pain recently.  Being fro the UK means NHS and free treatment without boundaries so I was given Enbrel a few months ago and after one day I had no pain and very little stiffness.  I thought I was cured until 6 weeks later I suffered a week of trigeminal neuralgia, forcing me off the Enbrel.  Three weeks on and the AS is back with vengeance.  Those with As know that this means a flare up – one of many.  I have 2 baby boys and the 6 weeks free of pain showed me how different I am with them and how much I can help my wife when well.  I am never going to give up, but some days I wish people would be understanding of my condition.  That makes me feel down. I am considering trying Humira and have been offered this but am not sure and am worried about side effects.

This is a nice forum, giving the chance to tell others with AS that we are not alone in this and we will work together to make sense of it and to do what we can to get better together.

Kind regards

Bryan White

England, United Kingdom


13 Responses to “A.S. Face 0954: Bryan White”

  1. Thank you cookie. I feel like a human being now. Any UK AS sufferers – it would be nice to hear from you. Seems no one knows of the condition outside of Doctors etc here and I would like to know what you do to maintain a normal life.

  2. You sound like me Bryan. Diagnosed at age 40…with symptoms going back to my mid 20’s. Pains that didn’t heal in a reasonable time with no apparent cause.(Why can’t the doctors plug THAT symptom into their computer and out pops an AS diagnosis.)

    I’m sorry about the Enbrel. Why can’t they “tweak” the dosage…enough to squelch the flare…but not enough immune suppression to bring on other problems. I think all of the TNF’s are a “little different” (or else there would be patent infringement)…so maybe the Humira might not bring on the same side effects as Enbrel. Keep mixing and matching until you find the right cocktail….unlike the one you have in your hand! LOL.

    I know right…about people not understanding. I quit my job of 22 years a few weeks ago (they asked me to stay in an administrative capacity), but it’s like, “What…you haven’t noticed me limping for the last 10 years…and my boss goes, “ya, I know about arthritis…my thumb hurts once in awhile!! WHAT! So I explained to him, in detail, about the disease…for like the first time. It’s also hard for us to admit to employers that we have an invisible disease.

    Hang in there…you’ve just began the treatment process…you’ll find the right mix…and I just know another door will open.

    • Hi Derek. Thanks for the reply. I am glad to finally have heard from someone with AS and to hear that we have similar experiences is good because we can help and support each other. I decided not to work for anyone anymore because being self employed means I don’t need to explain to people who don’t know AS (you are right about the gormless comments) and work in jobs which are bad for posture. Work colleagues on floor level never understood that the condition flares up but at least the upper bosses gave me every chance to fit in and do the job around my AS. It just got too much and I decided to break away for my health. Left a well paid job to do something that although has no financial certainty, it is exciting. How do you cope with working?

      • Derek, also forgot to say what do you want to do now you have left your job? For me it was a case of not being able to sit at a desk fixing computers anymore. I hope you think of something to do that you enjoy. Are you in the US?

  3. Hi Bryan,

    Thanks for the detailed story.
    If you are scared of taking humira why don’t you try Low dose Naltrexon first, I has helped me in an amazing way and even after a year I have had no side effects. I can sleep through most of the time when I don’t traumatise my muscle attachments with exercise, I get to dream again, not sure if they are vivid (the only side effect that people mention regularly), I used to always dream before AS kicked off properly. I think it’s a sign of total relaxation.
    It can also help heal your ulcerative colitis, with a more natural protocol you’ll be able to help your gut and body repair itself now that you have realised that the medications have done much damage.
    It’s good that you are starting your own business, it works out much better that way, less stress means less pain too.
    I have made my passion for resolving AS pain my job, I am a holistic personal trainer working with people that have long standing pain conditions. I think working for yourself you’ll more than when employed but If you alsp also make time to relax to keep AS calm all will be fine. Try headspace.com for some meditation, only 10min will make a world of difference. When I started I liked it so much that I did several a day.

    It be good to hear how you get on.

    All the very best

    Marie

    • Thank you Marie.

      It is interesting to see that you have had good results with Humira but I have read that it can lead to all sorts of health problems later on and I am weary due to having suffered from years of ibuprofen use. Humira is much more powerful so my worry is that the lasting side effects will be worse.

      Regarding the business you are so right, it is liberating to be able to think about work in a new way. I spend time looking for products and have not started the business yet but it is looking positive. I am going to be selling lighting and cushion covers and other soft furnishings. This is all with my brothers support as he has contacts to get the stock. Apart from my wife he has been the best support and encouragement I have had my whole life. I would be lost without either of them. I will give headspace.com a look.

      Take care for now and lets hope your pain stays at bay.

  4. Bryan, how are you mate! I have AS and in Australia, I have started a home based business based around a healthy energy drink (mangosteen, green tea and aloe vera).

    Have a look at my website mate!

  5. Hi Bryan,

    you misunderstood, I do totally not agree with conventional treatment form the NHS. I only do holistic stuff and corrective exercise, and it works – totally not wooowoo….

    I take LDN – Low dose Naltrexon.

    If you want to get in touch visit my website http://www.mpower-fitness.co.uk.

    I am based in West Yorkshire.

    All the best

    Marie

    • I see what you mean Marie. I have had quite a painful day and I did misread your reply. Cloudy head. I like the idea of an alternative method and wold love to try something else. I will look at your site.

      • Don’t worry I just wanted to make sure you wouldn’t miss out on the opportunity to try something that could make you better. Hope you are doing better today. AS can be random can’t it?

        All the best

  6. hey, i have just had an mri and now they think i may have this.. goin throu my pack they gave me regarding to AS but i am having a rheumatology review.. im 32 in weeks.. does it deteriate really quickly??

  7. Dear Bryan,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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