A.S. Face 0018 : James Barnett

Hello, my name is James Barnett and I am 40 years old.

I have had Ankylosing Spondylitis (AS) for 30 years and I have been officially diagnosed with AS for 23 years. In the very beginning I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) because the arthritis symptoms started in my left ankle and not anywhere else. Luckily I was able to get that JRA diagnosis right away so I could begin prescription strength arthritis treatments early. It wasn’t until 7 years later when I got my AS diagnosis though. I didn’t find out that I was HLA_B27 positive until I was about 35 years old, but I’m sure my doctors knew about it long ago when I was first diagnosed with AS.

During my childhood I was seeing a chiropractor along with some of my family members because of our bad backs. My chiropractor was the first of my doctors to spot something going on in my spine and was the first one to offer to refer me to a specialist (technically a surgeon). My chiropractor had to give me up as a patient too, as he felt it would be too risky to do any chiropractic treatments on me.I am the only member of my family who developed AS though, and nobody in my family can recall any family history of AS or any of the related conditions, but I might have a brother with Psoriasis or early Psoriatic Arthritis though.At the time of my JRA diagnosis, when I was 10 years old, I had to be hospitalized by my juvenile orthopedic surgeon for observation and have my legs kept in traction because of the arthritis, and then be released to be put in a weird pelvic brace that spread my legs apart. I can’t recall how long for either, but I remember not being able to go to school for several weeks, and missing out on my entire summer vacation. I had to go through this because the doctors saw there was something very peculiar going on with my legs.

I remember different types of doctors from the area coming to see me, including rheumatologists and other surgeons.By the time I was 15, the pain and swelling had already spread to both ankles, both knees, and then both hips. It wasn’t too long before I found out that my hips were fusing after seeing my own rhuematologist for the first time when I was 17. My hips used to be fused solid in an awkward and very embarrassing sitting position by the time I was 19, which is also when I had them replaced (2 total hip replacements, one after the other). I had a very difficult time with Sciatica when my hips were fusing too. Having them replaced was the scariest thing I have ever done at the time, and it was very painful to go through, but I would do it again in a heartbeat because the new hips have helped me tremendously and they also got rid of my Sciatica. I am due for new replacements pretty soon, probably next year or the year after.

At age 16, I started having problems with Psoriasis too, but that didn’t get diagnosed until I was about 38 years old. I probably could have got it diagnosed much sooner, but I thought it was only dry skin and rashes from my arthritis medication for about half of the years. In my early twenties I was barely able to work because the AS had already started fusing my spine. I never knew which part of my spine started fusing first, because it seemed like spine was equally stiffening and painful. Then there were periods of time where my upper back and neck hurt much more though.

By the time I turned 25 I lost almost all movement in my neck, and by the time I turned 30, I was fully fused, and had already had my first compression fracture just below my neck which caused my posture to worsen right away.Since my thirties I have also had to deal with other AS complications like Ulcerative Colitis, Hernias (3), Iritis, Kidney Stones (5), Stenosis, nerve damage in my arms (2), and several other various operations. At around 35 years old I fractured my back while stretching, and then within weeks it became much worse and I became unable to walk for 3 years because of it.

My doctors expected it to heal on its own but it continually got worse instead. It took me 3 years before I could find a doctor to repair the fracture, but once it finally got fixed, I was back to walking again. Two of the reasons why my back so easily fracture was because my spine was fused, and because it became fused I also got osteoporosis, and those two things combined can make anyone’s back fragile. They fixed the fracture by fusing (or refusing in my case) the joints in my spine together with 2 rods 12 bolts with a bone graft. The injury in my back was actually a cross between a compression fracture and broken fused joint.During the past five years or so, nearly every type of arthritis medication has given me serious side effects and adverse reactions, but I never had that kind problem before.

Some of these problems were serious enough to keep me in the hospital until the side effects have worn off or have been treated. At least one of the side effects is permanent (there is a possibility of two) from what my doctors are telling me. For now I am not supposed to have any biologics, or nsaids (at regular dosage), and the use of dmards, bisphosphonates (for AS induce  Osteoporosis), narcotics, and muscle relaxers are all still being debated. I must have some sort of problem with long term drug toxicity, hypersensitivity, or something else causing the adverse reactions and bad side effects.

I don’t really know what I am supposed to do for treatment in the future, but I am making the best of it with what little I am still able to take.At the moment I am taking low doses of mobic and vicodin which helps keeps me moving at least, but I can tell it is not nearly enough to manage my pain and mobility and slow the progression of AS. Much of the medication I have taken throughout the years did give me moderate to great amounts of relief, but for some reason we were never to stop any of the progression of my AS, and now I’m having difficulties taking the same medications.

I also like to experiment with some nutrition, supplementation, and dieting or pain relief, but since I don’t work anymore and retired early in life, my income does not let me afford everything I would like to experiment with. Luckily I am still able to afford to have medical and prescription insurance, and most of the other necessities I need. My doctors and I never once considered myself to be a typical AS patient, so don’t my story make you worry about your own condition, in fact they say most of us with AS go on living happy and fulfilling lives.

I’ve been a member at a couple of Ankylosing Spondylitis support forums for going on 7 years, and I have seen most other members able to do just that. One thing that is not typical is that some of the doctors I have seen strongly believe that I have been living with two different arthritis’s all along, Ankylosing Spondylitis and Rheumatoid Arthritis (I also test RF positive). The other thing that made my health much worse in the long run was getting the Ulcerative Colitis, which still hasn’t ever been treated with medication by the way (except during the 3 days when I was hospitalized for it), and that is where everything else started to follow like a chain reaction.

Currently I’m fused completely in my entire back and neck, and half fused in both shoulders, and partially fusing in my ribcage and my collar bones. It’s been 30 years and I still don’t know if my sacroiliac joints are fused/fusing or not, but I imagine they must be by now. I can say they have been hurting lately though.

Thanks for reading my story,
James

Ohio, United States Of America

(http://jamesb.netne.net)


17 Responses to “A.S. Face 0018 : James Barnett”

  1. I meet James a few weeks ago,even though he is bent and fused by AS,his inter James stands tall,and i do look up to him.I am glad we met and proud to call him my friend.

    Tommy

  2. Good to see you here James and thanks for adding your photo.

  3. Thank you for sharing your story with us. It is amazing. I missed so much school too and the fact that we can keep trying despite all we go through is a feat in itself. Seeing your pic has inspired me to take a pic of myself and show how much my back is curved. I couldn’t do this before because I was self conscious, now though I am going to do it this week. Thanks for that. It is a reality we live with and our curves are a sign of strength and endurance. We survive despite the pain. A big hug to you, James.

  4. Thank you for sharing this, James.

  5. Thank you for sharing your story, James. I, too, am concerned about long term uee of meds. Praying about that one.

  6. Thanks for your story,James. You have endured much.Have you ever tried Remicade for your Crohn’s disease? It really works very well for some patients. I understand the drug toxicity problem…I have issues with drugs myself.Gentle hugs to you,James.Never give up!!!!<3

  7. Hi Catherine,
    Actually, I worded my story a little wrong towards the end. I have tried 3 biologics so far so that should have counted as treatment towards my Colitis too. Unfortunately, Remicade and Humira has given me Atrial Fibrillation with Rapid Ventricular Response reactions, and Humira has given me a Palmar Plantar Pustilosis reaction. These are the conditions that might be permanent, and so far it looks like the afib will be.

  8. Thanks Tommy,
    It was a privilege to meet you and Maria too. We should do it again sometime. I look up to you too, because as much as you have gone through, you keep on going, and seeing the world, and making new friends in new places, and well, you know the rest 🙂

  9. Thanks Kevin,
    I don’t think I could have posted my picture if it weren’t for you posting yours roughly two years ago.

  10. Thanks Diane,
    I am very self conscious too, but for the past couple of years I have open up considerably for my AS friends on the net. I don’t know what I would do without them.

  11. Thanks Deanna,
    In a short time I feel I have gotten to know Cookie, and I consider her my friend, so I feel honored to be able to share my story with her and her friends.

  12. Thanks Elizabeth,
    Yeah, I have to admit I am worried about what’s in store for me in the future. I might not know what I can do now, but I haven’t given up hope yet. I can get some amount of relief going down the alternatives route too, but I haven’t been able to go full force with the alternatives yet.

  13. I didn’t say it before, but thanks for the suggestion Catherine. My AS pains were treated well with biologics (especially Remicade), so I’m disappointed by not being able to take them. I suppose there is a chance that they could simply be too strong of a medication for someone like me. I also wanted to say that I have tried Methotrexate too (twice), but it seems to make my ulcerative colitis worse, and didn’t do anything for my AS pains, but I can say that it helped noticeably well with my Psoriasis.

  14. Dear James,
    Your strength astonishes me and your courage is amazing. Thank you so much for being so strong and sharing your story!
    With much respect and admiration,
    Sincerely Cookie

  15. I adore you James. Always have. You are so positive and helpful to those of us who are lucky enough to know you. Glad I’m one of them. Thanks for sharing your story AND your photos!

  16. Thanks Holly and Cookie!

  17. You used all three wristband images? That made me LOL, but hey, it looks great! Thanks for posting them. 🙂

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