I have long history of back problems and have two discectomies, external fixation, hip spica, caudal epidurals and 9 epidural catherterisations. I have been using a wheelchair full time now for 19yrs. No one understands why I can not walk or stand, but the straighter they tried to put my body the more misfiring I would experience in my back and legs. I also suffer from convulsive spasms which make me black out. I have had doctors say that spasms like this do not exist and it is in my head, but can not answer why my pupils dilate and my oxygen and breathing levels go down during the spasm. Unfortunately no doctor in this country is prepared to touch me with a barge pole, as I originally had a lawsuit going, which I dropped due to the horrendous treatment I started to have, and I no longer wished to lived.
I have moved on in life and try to deal with life positively and also compete in wheelchair athletics and swimming; but for the last last 11yrs I have had a severe pain zone over the top of my back, almost in the shape of a ' T ' as it radiates down my spine to the Thoracic area. It started out as a tingling sensation that was sore, but itchy too. Now it is a burning, tingling itchy sensation that never goes, it just varies in severity. My surgery was on my L5S1, so this does not account for this; but I was diagnosed with Spondylosis of the Throacic and Cervical spine 7yrs ago. I have been to a Rheumatologist and Neurologist in the last 2yrs, but they have both refused to discuss my back pain and loss of core stability stating that there is no point even going there as this is a long standing problem; however, I have never actually been treated for my Thoracic or Cervical spine, only the lumbar and that is the best part of my back, even though I have neurological misfiring and weakness; but compared to the top of my back and rib pain it is nothing.
My son got diagnosed with Ehlers-Danlos Syndrome type 3 and told me he got it from me, in which I have been told I have the Benign Hypermobility syndrome for sure as I scored 8 on the Beighton scale.
My pain is increasing and my mobility is getting worse to the extent that sitting unaided is difficult and I get numbness in my legs, but the numbness is intermittant, so the doctors have said it is impossible to assess. I have been told many years ago that I could have Arachnoiditis, but my burning pain is not in my lower region anymore it is from the Thoracic upwards. Please can you tell me if you know what my pain is and how I can reduce it. I am very active in my sport and would like to continue but the pain is getting unbearable.
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