Monday, April 27, 2015

Back Pain That Never Ends...Dural Ectasia

I have written recently about Marfans Syndrome, a connective tissue disorder that I suffer from. Now I want to delve more into a condition that stems from that one. It's called Dural Ectasia. About 60% of patients with Marfan Syndrome also have this condition. What is it? Well it is a condition where the "dural", or fluid that surrounds the spinal column, becomes enlarged. Cysts can also develop in conjunction with this enlargement. What does this mean for the person who suffers from it? It means chronic pain. At times swelling and nerve pain will occur that makes you hurt whether sitting, standing, or laying down. There is no true relief that can be had. My experience with this condition started when I was in 8th grade.


In 8th grade I was in Science class and went to sit atop a stool at those large black block tables. They are taller and harder than average desks. As I was sitting down a boy who sat behind me grabbed my stool with his foot and pulled  it backwards. I fell to the ground from the height of the stool straight onto my tail bone. It was not pretty. I had to go to the nurse and from that day forward I began having difficulties with lower back pain. I even had to be pulled from school. I went through months of doctors really not knowing what was wrong. Marfans is only just now getting to be better known, back then it was still an unknown condition. Dural Ectasia was even more unknown. I had steroid injection procedures and electrode therapy, and worst of all I was put on every kind of pain killer and muscle relaxer that they could give me. I was even on a med that is used for seizures... Nothing really helped. It just gradually decreased in severity on its own. From then to now it comes and goes. At times nerve pain even shoots down my leg. This condition can also cause migraines and abdominal pain. When it comes I suffer through and try to take it easy and when it goes I try to just live my life as well as I can.

When you have a condition that affects practically every part of your body all you can do is take what comes and grow stronger from it. This is how I was born and the burden I have to carry in this life. There are good days and bad days just like there is for every other person in the world. I am not better off or worse off than anyone else. We just suffer differently. The point is not the suffering though. The point is the overcoming of said suffering. I have to go through the bad days to truly appreciate the good ones and make the most of them. That's how I feel about it, or at least I try to!


6 comments:

  1. So sorry you are going through this...all because a boy decided to be funny....so not funny! Thanks so much for sharing on #momsterslink.

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    1. Thanks, I try to think that it could be worse. There are worse things that cn happen to a person. Thanks for reading! :)

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  2. So sorry about the pain you're feeling. I think your positive attitude is what's getting you through it! Keep smiling! #monsterslink

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    1. Thanks for stopping in :) :D I appreciate your comment a lot

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  3. I feel you, Literally, I have been dealing with my dural ectasia since about 2008 when it started my chronic pain. I know everyone pain is different, Im curious what you do do manage it? Im always looking for new method of control, massage, accupunture etc.. any thoughts? As of now, I am currently on narcotic pain patches. Which is a problem of it own...

    Thank you for posting this, its helps remind me that I am not the only one suffering with this...



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    1. I have been lucky enough to be married to a wonderful man who wants me to be as stress free as possible so i don;t currently work. This allows me to stay off my feet when needed. The biggest help I have found is changing positions. When standing too much I get pain, when sitting too much and when laying down too much. So I try to change position when needed. Regular exercise to strengthen the lower back muscles is very needed as well. When the muscles are week it is a lot easier for the swelling to take place when exerting yourself. I do take pain meds when needed also. Mostly it's been something I have been dealing with now for about 14 years and my biggest suggestion is to stay healthy and keep your body strong. My mother ended up suffering much more before her passing because she was very out of shape and the littlest exertion would cause a flare up. I have been interested in looking into acupuncture...and might do so soon. If I do I will be sure to blog about my experience and its effects.

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