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Autoimmune disease

Tears of pain

0 replies

breakdownbodybreakdownmind · 16/02/2019 02:32

Just that.

My body hates me. There isn't another logical way to explain what is happening.

25 years ago my right ankle didn't heal from what we though was a sprain. It tended to sprain/swelling when I was in primary school but no alarm bells rang - I just sat out more pe lessons than most and became proficient at bandaging it. And I also just figured it was a variation of normal that my ankle hurt whenever I had a throat infection or an ear infection.

But at 13 the swelling wasn't going down, and I couldn't manage just limping, I needed crutches. So off to a specialist. And then another.

Long story short - from 13-17 I had a couple of hospital admissions, many strong meds pumped into my body and somehow finished school with ok pass marks despite stamina issues which meant I missed most afternoons and slept through half of grades 8-11.

Things were stable during uni years, though the problem had spread up my leg and now I was also strapping my knee and dealing with pain in my entire leg. Instead of continuous high level pain meds I had pethidine injections every flare (once or twice a semester) and otherwise just coped. By that point I had managed to build up the muscle in my leg - the right one wasn't obviously atrophied. And I was coping 50% of the time without mobility aids, and 49% of the time with a walking stick. Crutches were for worst days only.

24-33 I was continuously pregnant and/or breastfeeding and while I still limped a bit most people in my life knew nothing about my weirdly behaving right leg. I used a walking stick for the last few weeks of the fourth pregnancy but that was about it.

2 years ago I woke up and my right leg felt really ache-y and heavy. I didn't realise that was the beginning of the end. Within 4 weeks atrophy of the right leg was visible. Within 8 I needed a walking stick full time. A few months later I couldn't balance without crutches and my ultra-sensitivity to touch had spread up the right side of my body. July 2017 I collapsed in public, and ended up in emergency unable to move a muscle in my right leg. In agony. So touch sensitive that I cut off the right leg of my tights and couldn't cope with the touch of a sheet or blanket. When my blood pressure tanked while they were pumping meds into me they turned off the machine and told me to go home and deal with it.

I ended up 3.5 weeks of rehab and then home using a wheelchair. Physios insisting that I just wasn't trying hard enough to use crutches most of the time. No way to get upstairs to my children's bedrooms without ending up in so much pain and exhaustion that I ended up
In tears. Plus once I got up there I couldn't really move around.

Today the pain and sensitivity affects the entire right side of my body. I've lost muscle tone everywhere. I can't sit straight because there is no padding left on the right buttocks and now my right arm is losing muscle and capacity. I already had to learn how to drive with my left foot and my right leg is skinny and hairy and the foot is misshapen and hangs at a weird angle.

I'm in bed crying from pain even after taking meds. My foot is at a weird angle and Valium, used as a muscle relaxant, has not helped me move it. And my arm is visibly atrophying and I don't know how to stop it and neither do any of the professionals who are supposed to know answers

I finally have a functional wheelchair but the gov agency is fighting with my OT about replacing my bed with something that might allow me to not have to lie entirely on my left because the right is not coping with contact.

All I want is my brain back and to be able to sit without pain and ( if it's not asking too much) to somehow keep the use of my right arm and reverse some of the atrophy.

And for all 4 of my children to magically turn into easy kids who are basically ok with life as it is and who don't need any classroom accomodations ever.

Oh - someone thinks it might be Mitochondrial. I'm not sure if this is a useful thought from her as there doesn't seem to be much out there that's encouraging if there is an element of that.

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