I live in the UK. I’m sorry, but I only speak, English, so I can’t translate.
My journey has been long and hard.
When I was younger, I did a lot of ice-skating, so I always put the, pain in my legs down to the skating.
As I got older I had a few admissions, also, for stomach issues. But no one, could tell me why? They just said, my severe constipation, was the cause.
Over the years things progressed, where I started, getting unusual sensations, in my feet.
This would be a constant burning. Then it got to the point, I was experiencing, what I call, severe electric shocks. These are unbearable.
Over time, the pains in my legs got worse, to the point, in 2010, I ended up in a chair. As the issues were so bad. All this escalated over time where I can’t even take a shower.
It’s like when the shower hits me, the force of the water, is too much to bare.
I can only bathe, but I wear special bags on my legs to protect my feet from the water. It’s because my feet and legs hurt so much. If I’m in the water, I can’t regulate the temp. Plus when I get out the bath, if the cold hits me, I’m in agony.
In 2011. May I add, I’ve always suffered with my bladder and bowel.
My bladder, went into retention, where I could no longer wee.
So, I tried catheters etc, with no joy, as my bladder, would burn like cystitis. Eventually, I was given a super pubic catheter. Through my tummy. Big mistake.
This caused so much pain and burning. Hosp admissions infections etc Where Eventually, I was offered a bag. (stoma bag). As the catheters ruined my bladder, and caused, institial cystitis. in 2017, I underwent surgery.
So much in-between. I’m jumping to 2019. As I said previously, constipation, as a child.
Well, I relied on laxatives, which caused, my bowel, to stop working. I underwent, so many tests and the food would not pass, so again, I was given another stoma bag.
Now I have 2 bags. You may say we’ll stoma are not part of Fabry. But it was the catheter s and other meds, that caused, my bladder and bowel to stop working.
Jumping forward. Sweating issues.
I used to think, I was lucky, as I ´ve never been able to sweat, till that started to impact me.
Over the years it’s all escalated, severe headaches, all over burning.
So much more to tell you but I don’t want to bore you. My mutation runs in my family from my father to sister to me, we all have symptoms but as my mutation is classed as a variant unknown. No treatment is available. I am currently suffering from chest pain. It happens occasionally, out of the blue. It’s like a sharp pain…stabbing. And I have a heart murmour.
I wear hearing aids as my hearing is going and I also have tinnitus and vertigo.
As I’m getting older the issues are getting worse.
Thank you for reading. Take care all.