A.S. Face 0051: Rob Paterson

One way to improve your pain threshold….Get AS!!!

I’m 33 and was diagnosed with Ankylosing Spondylitis in July 2010 after suffering with back pain for the best part of 10 years. I remember in the early days it would be a dull ache in the morning and I would find myself starting to take longer showers in the morning to direct the hot water on my back to get myself moving. I didn’t think much of it at the time and put it down to one of the joys of getting older and living on my own without having Mum to clean and cook and all the things we miss when going out into the big wide world. Over the next few years the back pain would come and go and I would try my best to ignore it. I used to think that maybe I should be living a healthier lifestyle and not be up the pub most nights and shouldn’t be eating so many take aways…I’m just a bit out of shape I would think after having to stop and stretch every five minutes when out in the garden or on my feet for any amount of time.

In early 2007 I was in a car accident and suffered a whip lash injury. I had physio for a few sessions and was on painkillers for much longer that i expected. For a time after this I kept getting told all my problems were a result of this injury and my muscles would require time to heal. It was this period that was the hardest, nights of excruciating pain from back spasms. If I could describe it, it is like being stabbed in the back with a red hot poker with the sharp pain meaning you actually hold your breath for 30 seconds or so and are then afraid to move for fear of another attack and end up doing everything in slow motion (like a scene out of Baywatch). Also I found myself being scared to death when I could feel the onset of a sneeze. This was like being stabbed in the back and punched in the chest at the same time, sometimes kicking off a spasm as noted above and re-starting the circle of pain.

In early 2009 I decided that perhaps a lot of theses problems were being caused by the extra pounds I had gained since starting work and moving out of the family home. (on reflection living close close to the local pub is not a good idea) As a new year resolution I underwent a rigorous health kick over the next 12 months and managed to shift the unwanted 7 stone (98 pounds). For a while I thought I had solved the problem, I had more energy and the pains had lessoned a lot. (There is a pattern here of symptoms coming and going and the body tricking you into not linking it all together)

I was wrong however as in early 2010 the symptoms returned with a vengeance . I was lucky if I would get 2 hours combined sleep the entire night with constant tossing and turning. Trying to turn over in bed, I was like a plank of wood. Also my neck and shoulder became very stiff and very painful. This continued for the next few months and I was taking more and more painkillers.

I finally went back to the Doctors and refused to be passed off with the usual talk of it being to do with the car accident any longer and insisted that I get sent to see a specialist even if it meant seeing a shoulder specialist as that was causing me the most pain at the time in her opinion. Once I saw the specialist, he commented that I was very stiff and sent me for an MRI scan and while I was there, I managed to convince him to scan my thoracic spine at the same time as this was the main culprit in my opinion. After a long wait he called me into his office to go over the scans. The first thing he said was that he couldn’t see anything wrong with my shoulder (here we go again i thought) but could see something showing up on my thoracic spine and ribs on the MRI. My first thoughts were, what the hell is it? Am I going to die? He looked at me and said, no nothing like that but that the MRI scan had shown bone growth (fusing as I would later learn) and that he thought I had a disease called Ankylosing Spondylitis. Myself, like probably 99% of people hearing these words for the first time thought what the hell is that and spent the next week in a daze searching the Internet for information before going to see a rheumatologist.

When my appointment came around and I had the blood tests and x-rays done and he had finished prodding me and informing me how my lateral flexation was down at 20% and this was that etc. He confirmed that I did have Ankylosing Spondylitis and had tested positive for HLA-B27. Also he confirmed that some fusing had been going on in my thoracic spine and the x-rays showed evidence of damage to the lumbar spine. I finally felt relief that the pain I had been feeling was reel and I had evidence in my hand. Now I knew what it was, hopefully this was the start of getting some improvement and relief of the symptoms even if there was no cure.

I was initially started on naproxen, which after some early wobbles (including a trip to hospital after collapsing on a stag do…another story) took the edge off, but after a couple of months wasn’t really doing much to ease the pain and stiffness.

I subsequently have been on diclofenac with at first sulphersalazine (gave up due to rash) then Methotrexate. MTX was awful as I hardly had the energy to get out of bed and the mood swings were so bad and I felt so low I was worried I may do something. The last 10 months I have been on Leflunomide with the diclofenac. Pain has increased, but I have at least felt more myself again and have to some extent managed to muddle on through. I am currently in the process of going through all the red tape and jumping through the appropriate hoops to get accepted onto the TNF treatments.

Also I have been undertaking physio and Hydrotherapy on alternate weeks to try and loosen me up a bit over the last year. This i am going to miss greatly when my company healthcare ends at the end of October 2011. I pray that we have a mild winter so that I can at least get out for some walks to prevent the body seizing up over the next few months.

Rob Paterson (@brother_berto)

Cheltenham, Gloucestershire England

5 Responses to “A.S. Face 0051: Rob Paterson”

  1. Thanks for sharing Rob walking helps its all I can do now.

  2. Dear Rob,
    Thank you so much for being a part of my vision. I have enjoyed working with you on our blog carnival. You are one of the many blessings AS has brought me.
    Sincerely Cookie

  3. It was like this story had been written about me rob, makes you feel less lonely in the battles with AS, as most people present with mostly the same symptoms it baffles me why doctors/consultants still take so long to diagnose this awful disease, good luck with the TNF i’ve had my first lot of Enbril and had to stop after 5 weeks because of side effects x

  4. This is like my story minus the accident. My ins company has also turned me down for remicade they say I don’t meet their criteria. I remember trying everything in my power not to sneeze or cough. Thanx for your story.

  5. Oh wow how i can relate to the bit about sneezing. I cried and laughed when I read that. Hang in there….we are all holding those sneezes in. But I do remember a time when sneezing felt good….ahhh the god days.

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