Last updated on 16 October 2020
With my condition, there are good days, there are bad days. Good days, I feel like I can do anything. Bad days, I’m stuck in bed. I recently had a bad day. I laid there in bed in so much pain, I could move. It hurt to talk. It hurt to even move my hand. It even hurt to snuggle up to my teddy of 22 years and my blanket which is light as a feather. It was like, my skin was hurting. But, no reason why my skin could hurt. It was like (It’s hard to describe), imagine that you have a brand new tattoo and someone touches it. It was like that. Just… Pain.
I have a rare condition called Syringomyelia. I did post a link in a previous blog about it! But, all sufferers are different. Personally, I suffer with Double Incontinency (explanation in a bit), muscle wastage and (sorry if you are eating) constipation. We dont know if its connected, but I also have Hyper Mobility Joint Pain Syndrome, potential PTSD, Anxiety (social and general), dyslexia (and irlens), Scoliosis and Clinical depression. How am I still standing? I have no idea. I have been called a medical miracle. Let me explain it.
Syringomyelia
What Syringomyelia is, is a bubble of fluid in the spinal cord, crushing nerves, slowly, slowly, slowly, slowly… slowly… infinity detected slowly growing. Its reffered to as a Cystic collection or a Syrinx. I prefer calling it a bubble of fluid. I was diagnosed in 2004 when i was 5, and had the operation in 2005, when I was 6. They had to break my spine to fit a Subachnoid shunt. The only way I can describe what it is is like a filter. It takes out the bad, keeps in the good. That is the only way I can describe it. It is a life long condition, but as I said, affects people with it differently. Personally, for me, I have Muscle wastage, double incontiency and Hypermobility Joint Pain Syndrome and what I call Painless Legs. Heres an explanation of these “symptoms” I’ll call them.
-Muscle Wastage. Slowly after time, my muscle will deplete and soon, I will be just skin and bones. Like, it will just, go. No way to build up etc. If there is, It won’t help for long. Also, due to this, I can break my ankles just by walking.
-Double Incontinency. Where the Bubble Of Fluid has crushed my nerves in my spinal cord, it crushed the bowel and bladder nerves. There is no signal going from my bowles or bladder to my brain. I cannot tell if I need the toilet. It is hard, but I now wear Attends, and change when I feel I need it. I am managing extreamly well with it.
-Hypermobility Joint Pain Syndrome. All I can say for this one is I am super flexible. But a bit like the muscle wastage, due t this, if I am not careful, I can break my ankles pretty easily
-Painless Legs. This one is a bit odd. I can still walk etc. BUT, Sometimes, I cant feel my legs. This does depend on the day I’m having though. You can punch the top of my leg, and I wouldnt feel it. Could prick it and probably wouldnt feel it. The only time I feel it, is if I have done a LOT that day or even standing up for a long time. But apart that, you have no chance of me feeling my legs.
As I said. There are good days and bad days. Recently, it has been bad days. A bad day, then a good day. On bad days, I have been able to do things. But, not a lot. Like one thing and then thats it. Just the other day, I was having one of my bad days. I dried some dishes, then that was it. I was done for the day. I had to go for a nap and just relax if I had any hope of being able to do anything else the next day and that afternoon!
My original syrinx was T5-T10. But now, its T6-T7. However, There is now a second one. T7-T8. That was discovered in 2015. And we have no idea what is happening. And probably never will (it is a long story for another time).
But, while I am here, I want to tell you about Chiari. Chiari is like the “sister” to Syringomyelia. But in the neck/brain stem. and it cause the lower part of brain to push into the spinal canal. But, they can do decompression! Zipper heads are generally the term used for people that have had the decompression done because the scar looks like a tiny little zip!
The reason I say “Sister” though, is because in america (studies), it has been said that Syringomyelia and Chiari are basically Partners in Crime. I do not know much about Chiari, but I do know that much.
Other Peoples experiances
Everyone has a different experiance. And I am in a group full of these people. A few people have willingly chosen to share their own personal experiance with me to put on here to show you its not all the same.
“Well, in constant pain all on the left side, really sore under the arm, feels like a tennis ball is there but obviously it’s not. Feel very tired all the time and lethargic, most of the time my arm feels like it’s full of ice, even when it’s hot and sunny. My finger and toe nails are dying off, and head aches a lot. I feel more comfortable if I tilt my head but can’t walk around like that. Only on pregablin and tramadol, and cocodeamol, none of which takes the pain away. Only slightly. But Dr’s know best??? I don’t think”- Maxine B
As far as we know, I was BORN with Syringomyelia. I have shown Symptoms since I was born. But, I don’t think that changes a thing about me. It makes me who I am. It’s made me unique.
If anyone wants a talk, please do NOT hesitate contacting me! Even if its for a chat or something
Aimee xx