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Sorry to hear about what you've been through. Having to...

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  1. 925 Posts.
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    Sorry to hear about what you've been through. Having to study/work when sick is the hardest thing. It's very unusual take control of things oneself, especially when one is so unwell. Much admiration to you. Truly unbelievable that you were told it was psychosomatic!

    What you said about the steroid injection has given me food for thought.

    I've been led to believe steroids are dangerous when taken long term but I'm wondering if damage can be done short term in some people. I don't know if you've heard of a condition called red skin syndrome caused by topical steroids? There are members on the forum who did use them over large areas for a long time but a few who say they didn't and still suffered from it. I have no reason to disbelieve them. It looks not unlike GvHD of the skin. Great suffering for months, often years. Officially a 'rare' side effect of steroid creams but there are 8000 members and peer-reviewed literature on it.

    Amazing that steroid injections are being given to CLBP patients when they've been proven to be minimally effective.

    My family also follows also a special diet. When my children were young I used to get so mad at people who 'sympathised' with them for their socially restrictive diet. I'd tell them there's nothing more socially restrictive than being in hospital. It's a difficult diet to implement and a lot of cooking involved. I'm not the world's best cook and in the beginning it was a bit death by pumpkin mash but I got my act together and it's totally been worth the effort.

    Four different autoimmune diseases; three totally cured and one on the way out. Didn't fully get the results with my RA until I went nuts with the microbiome, brewing a lot of bugs in the kitchen. Sometimes it seemed like two steps forward and one step back and a very long road. I do see, though, why people want a quick fix and keep taking steroids.

    I share your frustration with medicine. We had an immense battle a decade ago. I came close to accepting the ruined life of a child. I think it's wrong to start with the premise that a disease is incurable and in children, who are designed to get better, it's nothing short of insanity imo.

    It sounds like you're on the right track now. I wish you all the best in your journey to full health.
 
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