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OI & Scoliosis - Massage?

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Old 10-04-2017, 07:45 AM   #1
Join Date: Oct 2017
Location: London
Posts: 1
angelcake4t HB User
Angry OI & Scoliosis - Massage?

Hi I'm new here. Wondering if anyone has any suggestions that may help me - I am at the end of my tether!

I have thoracolumbar scoliosis, I believe my curvature is about 36 degrees, and towards the left. I developed scoliosis as a symptom of my Osteogenesis Imperfecta (type 1)
I am in constant pain with my lower back and upper back. My consultants can't agree whether my pain is because of my scoliosis or my Osteogenesis Imperfecta bone pain, OR a combination of the 2. My lower back pain feels as though it is more bone pain. Whereas the pain in my upper back is mainly muscle pain/spasms/tension/knots. Both are controlling my life and making me depressed and I feel as though all hospitals and doctors now see me as a lost cause. I know I need some sort of massage in regards to the upper back/neck pain, I just don't know which kind and where to get it. I don't want to make my pain worse by going to someone who doesn't understand my problem and the NHS won't fund massage therapy, physios are the closest I can get.

I wake up in agony every morning and now dread going to sleep because of the pain that comes with lying still all night. I also can't walk or stand for more than 15 mins without a gradual worsening of pain in my lower back.

I get muscle spasms constantly and the only thing that even touches the pain a little is diazepam. My physio taught my fiancé to massage the knots out, but they are quite big and won't go down anymore. I had acupuncture for 3 months and it didn't help at all.

I wonder if anyone can suggest anything - I'd like to get someone who knows what they're doing to give me a massage. Not sure where to look?

Thank you - I am happy to answer any questions as my story is a pretty long one.


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