What's been going on... Ehlers Danlos Syndrome
For some mysterious reason, I can see my friends page again. It was blocked from work, which was part of the reason why I stopped posting as much. The other reason was that my life has kind of sucked, and I got tired of posting whines, even if that is what livejournal is for.
I've been functional enough to go to work to keep my job, which I need to keep because I have to have health insurance, and make it home, and do some work around the house, but that is it. Even the work around the house I've had to do in very small increments because of pain. My world has become very small as a result.
So, for those of you who don't already know: I've been officially diagnosed with Ehlers-Danlos Syndrome, Type III (Hypermobility Type). Turns out this is the reason why I've been in chronic pain for years, and also why I'm such a klutz.
For you engineers/scientists out there, my collagen does not have proper tensile strength or elasticity. It's genetic so I really can blame my parents. The genes don't have the correct template for building good collagen, so it isn't something that has an easy fix.
It is dominantly inherited but likely that I got "bad" dominant genes from both parents, since we see various indications of it from both sides of the family. There are 23 genes on 2 chromosomes that code for collagen, so except for the the super horrible versions of Ehlers Danlos (like where you drop dead from an aortal tear) they can't fully genetically test for it and tell you exactly which genes are bad yet.
Collagen is essential throughout your body, particularly in your joints, blood vessels and eyes. Among other things because my collagen is awry, I should never have lasik.
This is truly why I am such a klutz. It is very common to have horrible proprioception with EhlerDanlos Hypermobility Type. Plus, the joints themselves aren't strong enough and bend wierd ways. For examples see here: http://www.hypermobility.org/beighton.php. The instability also causes you to get injured more often, and heal more slowly. Your feet don't look flat when you take your shoes off, but when you put weight on them and walk the arch flattens, which throws off the gait and alignment off of your entire body. There really is a reason why I fall so frequently.
Often one traumatic injury can set things off so that your pain escalates. You have flare ups and things get better and worse much like fibromyalgia or chronic fatigue. This is also why I've always been so out of it in the morning. My body isn't healing itself completely in my sleep because it can't, it's got a bad blueprint.
Bad neck and back and migraines. Yup, it's the Ehlers-Danlos, it even discribes the pattern of the pain where it seems to start in the shoulders and neck and turn into a migraine which isn't quite how migraines are supposed to travel.
Oh yes, and many pain medications don't seem to work, such as asprin and tylenol. NSAIDs help some, but it is normally a trial and error process. So, when I had my ankle surgery last year and was drugged out of my mind? I repeatedly said that the vicodin and darvocet didn't lessen the pain, they just made it so I didn't care (Darvocet worked better for me that way). Yeah, it was just the narcotics, the tylenol part of either drug that is supposed to kill the pain? It wasn't working.
Suddenly it all makes sense. This is also why I was in such excruciating pain after my tonsil surgery. They don't want to give NSAIDs because they don't want to have clotting issues.
For now... I'm still in pain. Still barely surviving. I'm going to be in years of physical therapy, which is one of the few things that can attempt to strengthen the most critical areas so you don't hurt yourself as often. But, I am still dealing with how to arrange for the time to do physical therapy.
Knowing helps, in one sense, but I have a real fear of getting hurt again, which is actually common. E-D patients have significantly higher rates of anxiety attacks and depression compared to the normal population. And the reason is real. I *can* get hurt easier than other people, it isn't something that I'm imagining. (The part of knowing I'm not imagining it, is useful because it means I'm not going any crazier than I already was.) And handling the pain. I am taking NSAIDs now regularly where before I was afraid to do so. They are helping somewhat but I will be working with my doctor further to figure out the exact blend. The goal of the physical therapy is to teach you to protect yourself so you don't get hurt but it may take years for it to truly help.
So, I still may not be posting as often. I have a lot on my plate to try to cope with. But I figured I should let ya'll know what is going on.
AJ
P.S. THe kidney thing. Yeah the kidney infection was really bad. We think whe have it knocked. However, the excruciating pain? That was the muscle tears from the extreme nausea, probably again due to the collagen weakness because of the E-D (the docs said they only normally see tears like I had in the elderly). And the painkillers they prescribed were tylenol based, so they weren't working, again!
I've been functional enough to go to work to keep my job, which I need to keep because I have to have health insurance, and make it home, and do some work around the house, but that is it. Even the work around the house I've had to do in very small increments because of pain. My world has become very small as a result.
So, for those of you who don't already know: I've been officially diagnosed with Ehlers-Danlos Syndrome, Type III (Hypermobility Type). Turns out this is the reason why I've been in chronic pain for years, and also why I'm such a klutz.
For you engineers/scientists out there, my collagen does not have proper tensile strength or elasticity. It's genetic so I really can blame my parents. The genes don't have the correct template for building good collagen, so it isn't something that has an easy fix.
It is dominantly inherited but likely that I got "bad" dominant genes from both parents, since we see various indications of it from both sides of the family. There are 23 genes on 2 chromosomes that code for collagen, so except for the the super horrible versions of Ehlers Danlos (like where you drop dead from an aortal tear) they can't fully genetically test for it and tell you exactly which genes are bad yet.
Collagen is essential throughout your body, particularly in your joints, blood vessels and eyes. Among other things because my collagen is awry, I should never have lasik.
This is truly why I am such a klutz. It is very common to have horrible proprioception with EhlerDanlos Hypermobility Type. Plus, the joints themselves aren't strong enough and bend wierd ways. For examples see here: http://www.hypermobility.org/beighton.php. The instability also causes you to get injured more often, and heal more slowly. Your feet don't look flat when you take your shoes off, but when you put weight on them and walk the arch flattens, which throws off the gait and alignment off of your entire body. There really is a reason why I fall so frequently.
Often one traumatic injury can set things off so that your pain escalates. You have flare ups and things get better and worse much like fibromyalgia or chronic fatigue. This is also why I've always been so out of it in the morning. My body isn't healing itself completely in my sleep because it can't, it's got a bad blueprint.
Bad neck and back and migraines. Yup, it's the Ehlers-Danlos, it even discribes the pattern of the pain where it seems to start in the shoulders and neck and turn into a migraine which isn't quite how migraines are supposed to travel.
Oh yes, and many pain medications don't seem to work, such as asprin and tylenol. NSAIDs help some, but it is normally a trial and error process. So, when I had my ankle surgery last year and was drugged out of my mind? I repeatedly said that the vicodin and darvocet didn't lessen the pain, they just made it so I didn't care (Darvocet worked better for me that way). Yeah, it was just the narcotics, the tylenol part of either drug that is supposed to kill the pain? It wasn't working.
Suddenly it all makes sense. This is also why I was in such excruciating pain after my tonsil surgery. They don't want to give NSAIDs because they don't want to have clotting issues.
For now... I'm still in pain. Still barely surviving. I'm going to be in years of physical therapy, which is one of the few things that can attempt to strengthen the most critical areas so you don't hurt yourself as often. But, I am still dealing with how to arrange for the time to do physical therapy.
Knowing helps, in one sense, but I have a real fear of getting hurt again, which is actually common. E-D patients have significantly higher rates of anxiety attacks and depression compared to the normal population. And the reason is real. I *can* get hurt easier than other people, it isn't something that I'm imagining. (The part of knowing I'm not imagining it, is useful because it means I'm not going any crazier than I already was.) And handling the pain. I am taking NSAIDs now regularly where before I was afraid to do so. They are helping somewhat but I will be working with my doctor further to figure out the exact blend. The goal of the physical therapy is to teach you to protect yourself so you don't get hurt but it may take years for it to truly help.
So, I still may not be posting as often. I have a lot on my plate to try to cope with. But I figured I should let ya'll know what is going on.
AJ
P.S. THe kidney thing. Yeah the kidney infection was really bad. We think whe have it knocked. However, the excruciating pain? That was the muscle tears from the extreme nausea, probably again due to the collagen weakness because of the E-D (the docs said they only normally see tears like I had in the elderly). And the painkillers they prescribed were tylenol based, so they weren't working, again!