My battles with AS I believe started as a young teenager around the age of 14, I can remember not being able to get out of bed for the pain I was having in my hips and legs. This was of course put down to growing pains. I suffered with lower back pain from then on until I was in my twenty’s. This pain used to come and go but I always had a sore back, which was also sore to touch even when I wasn’t in pain. I had numerous trips to the GP, and I can remember many times bloods test would come back with high inflammation levels which was never investigated. I remember suffering too when I was pregnant with quite a lot of sciatic pain, and buttock pain which was put down to pregnancy pains. When my child was around the age of two AS reared its ugly head again to the point where I did not work from then on. Along with the pain came bouts of depression and fatigue which was like a vicious circle. Over the next few years I had many trips to the local hospital to see various consultants, I had x-rays, MRI scans, facet joint injections, pain management clinics, and physiotherapy to name but a few, all had different diagnosis to offer me. Some even said it was probably because I was overweight. I was eventually seen by a rheumy (well one of his understudies) who was very nice but decided for some reason not to even examine me and sent me packing. Two long years past and my symptoms got so bad I thought I was going out of my mind, questioning myself as to whether I was imagining this pain I was having all over my body. I had times when my wrists were that sore I couldn’t pick a kettle or pan up, I had muscle spasm all over my back which meant I couldn’t put my head down to my chest without crying out. The pain moved into my neck and shoulders, and eventually was that bad I thought I was having a heart attack and was rushed into the A & E. I now have a very good rheumy who diagnosed me with AS within 10 minutes of entering his room. Alongside the AS I also have ME and they assure me this isn’t anything to do with my AS, so that’s an added bonus as the ME has a whole list of symptoms of its own to battle with on top of everything else. I have been through the list of meds which I didn’t tolerate very well, including anti tnf treatment which I lasted 6 weeks on before the side effects kicked in and it was stopped. At the moment I feel like I’m between the devil and the deep blue sea all the time, when the bad pain comes on I have to take a few anti inflammatory drugs as they are the only thing that works but I am not supposed to take it anymore. I spend most nights watching the clock, can’t sleep, I have bursitis in both hips, making it uncomfortable to sleep as well as the back pain. I have a lot of pain in my shoulder blades and rib cage as well. I have a lot of hotspots which are sore to touch. I have a loving supporting family that I couldn’t live without, I have no siblings or relatives with AS so the theory of hereditary disease doesn’t quite stand up there, so I don’t know where it has come from, but I do have the faulty gene HLA B 27 that goes with AS too. I only had one child he is 18 yrs now, every time he might say to me that his back feels sore my heart sinks, I am praying that it hasn’t been passed on to him.
(I have picked this picture because it has two faces, just like AS, one happy and smiley and the other is sad, tired and usually creased with pain, the latter which not a lot of other people see as we only tend to go out on good days when we are feeling ok)