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- Mar 7, 2011
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This kind of sucks, at this point. I have considered the fact that I may have connective tissue disorder, for a couple years. Now I am pretty certain and only have to confirm it. I have a doctors appointment later today with the pain management doctor, and I'm going to talk to them about seeking a diagnosis for Ehlers-Danlos Syndrome. In addition to my post surgery pain (which is tremendous), it appears my body is going through the process of throwing in the white flag, because all of my joints and tendons have been hyperextending and dislocating for my entire life.
My older sister just confirmed her diagnosis, and unfortunately, I have essentially every symptom. The hypermobile joints, unusual and crazy bruising, gastrointestinal issues, etc. Etc. Here is a list of the symptoms. If you have a large amount of these issues, I'd consider getting yourself tested. The common measurement used to determine if you have Ehlers-Danlos is the Beighton Test. I mean, I gotta get a professional to confirm it, but yeah tbh I have everything
To be perfectly honest I have dealt with all of this shit, the only exception being at the bottom, the hernias. But to be clear, this is a genetic disorder and my father, the side of my biology this obviously exists, also had a ton of this shit AND had to have surgery for hernias. My nephew, his grandson, randomly had a spontaneous pneumothorax. So great, I have that to look forward to.
This diagnosis will explain so much in my life, unfortunately. My sister is about 9 years older than me, she essentially said it didn't start getting really bad until around this age. And boy, I'm really starting to feel it. I mean a lot of this stuff I've always had, obviously, but the physical pain has started to really take its toll on me, and my mental health. I mean, it explains how I broke & dislocated my leg so easily, too.
The adhd to the point that I cant finish a sentence or start something or stop something, explained. Panic disorder, fits of existential rage, hypervigilance, explained. Bipolar, extreme mood swings, explained. Clumsiness, awkwardness, explained. "Laziness" (fuck you its hard), explained. Stretchy skin, super bendy fingers, thumbs, explained. Extremely painful physical exertion, explained. Waking up with insanely ridiculous bruises, all the time, explained. It's because all of the tissues that compose my body have been stretched beyond their limits and are straight fucked up. My joints literally scream at me all snap crackle pop; like rice Krispys; any time I so much as reach over to grab something nearby.
Every single time I move, my joints are dislocating. This is why I can't ever fckin sleep. This is why I'm always in pain and don't watcnt to do anything at all. This is why I gravitate towards every fucking drug class, stimulants give me the energy I need to do anything, gabas take the extreme edginess away, opioids reduce the object suffering, dissociatives remove me from my body, etc.
I mean, I guess all of this shit is hitting me kind of hard right now( mm and finally making sense. I mean, its validating in a way. Knowing that, there's a reason I'm all fucked up I guess. But, the other thing that goes along with this is that the pain is just going to get worse and worse, day by day, year by year, because my body is slowly tearing itself apart.
Does anyone have experience with EDS? If you do, what symptoms do you contend with?
Is there any medications that have are useful for eds? I mean, yeah I don't think theres any question that im going to have a legitimate need for prescription opioids soon. I think I need to ask for pregabalin and cyclobenzaprine at minimum at this appointment. I think that would take the edge off until I figure out a routine for exercise.
Are there any specific exercises I should try? Man, the weight of this is feeling pretty real, I mean, my life has been super chaotic socially/emotionally, but my body has been keeping score in a very real way, and it has permeated everything. Shiiiit.
We can use this thread as a place to discuss Ehlers-Danlos Syndrome or other connective tissue diseases (1 in 5k people have this). I'll update regarding my battle with this shit, but I definitely would love to hear from anyone that has any type subtype of EDS.
My older sister just confirmed her diagnosis, and unfortunately, I have essentially every symptom. The hypermobile joints, unusual and crazy bruising, gastrointestinal issues, etc. Etc. Here is a list of the symptoms. If you have a large amount of these issues, I'd consider getting yourself tested. The common measurement used to determine if you have Ehlers-Danlos is the Beighton Test. I mean, I gotta get a professional to confirm it, but yeah tbh I have everything
To be perfectly honest I have dealt with all of this shit, the only exception being at the bottom, the hernias. But to be clear, this is a genetic disorder and my father, the side of my biology this obviously exists, also had a ton of this shit AND had to have surgery for hernias. My nephew, his grandson, randomly had a spontaneous pneumothorax. So great, I have that to look forward to.
This diagnosis will explain so much in my life, unfortunately. My sister is about 9 years older than me, she essentially said it didn't start getting really bad until around this age. And boy, I'm really starting to feel it. I mean a lot of this stuff I've always had, obviously, but the physical pain has started to really take its toll on me, and my mental health. I mean, it explains how I broke & dislocated my leg so easily, too.
The adhd to the point that I cant finish a sentence or start something or stop something, explained. Panic disorder, fits of existential rage, hypervigilance, explained. Bipolar, extreme mood swings, explained. Clumsiness, awkwardness, explained. "Laziness" (fuck you its hard), explained. Stretchy skin, super bendy fingers, thumbs, explained. Extremely painful physical exertion, explained. Waking up with insanely ridiculous bruises, all the time, explained. It's because all of the tissues that compose my body have been stretched beyond their limits and are straight fucked up. My joints literally scream at me all snap crackle pop; like rice Krispys; any time I so much as reach over to grab something nearby.
Every single time I move, my joints are dislocating. This is why I can't ever fckin sleep. This is why I'm always in pain and don't watcnt to do anything at all. This is why I gravitate towards every fucking drug class, stimulants give me the energy I need to do anything, gabas take the extreme edginess away, opioids reduce the object suffering, dissociatives remove me from my body, etc.
I mean, I guess all of this shit is hitting me kind of hard right now( mm and finally making sense. I mean, its validating in a way. Knowing that, there's a reason I'm all fucked up I guess. But, the other thing that goes along with this is that the pain is just going to get worse and worse, day by day, year by year, because my body is slowly tearing itself apart.
Does anyone have experience with EDS? If you do, what symptoms do you contend with?
Is there any medications that have are useful for eds? I mean, yeah I don't think theres any question that im going to have a legitimate need for prescription opioids soon. I think I need to ask for pregabalin and cyclobenzaprine at minimum at this appointment. I think that would take the edge off until I figure out a routine for exercise.
Are there any specific exercises I should try? Man, the weight of this is feeling pretty real, I mean, my life has been super chaotic socially/emotionally, but my body has been keeping score in a very real way, and it has permeated everything. Shiiiit.
We can use this thread as a place to discuss Ehlers-Danlos Syndrome or other connective tissue diseases (1 in 5k people have this). I'll update regarding my battle with this shit, but I definitely would love to hear from anyone that has any type subtype of EDS.
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