More EDS stuff: A film, followed by a timeline of my symptoms
Here's a short educational film about EDS, followed by a long-ass post, which is mostly for my own records/getting it all down somewhere, so I won't apologize for the length of it:
I should note that there are many of us who were asymptomatic as children (besides the joint hypermobility, which we just thought was cool), particularly the non-athletic ones such as myself. I have noticed the younger women in my EDS groups were all athletes of some type. The rest of us are middle-aged white ladies just now figuring out what's been plaguing us all these years, having had symptoms appear gradually throughout their lives/adulthood and worsening around their 40s; and most of us doing the legwork ourselves on the internet to find out about the disease and having the reaction "Oh my gawd this is me" and going to a doctor for confirmatory diagnosis, just like I did. I truly have never been in the company (even if it's only virtual "company") of so many others with whom I felt so much in common. But, I digress.
As a child, I wasn't athletic, besides climbing trees and rocks, and never really had joint issues. I had the dental (high, vaulted arch with overcrowded teeth requiring serial extraction--common with EDSers) and vision (extreme nearsightedness beginning in elementary school) problems associated with the EDS but we had no idea they were anything but just dental and vision problems. So the joint problems didn't really show up when I was a kid, aside from having to cut short a brownie troop rollerskating event at age 7 because (keep in mind I had never skated before in my life) I fell with my full body weight on my hand twice and sprained my wrist, all before completing even one turn around the floor, and needed to be brought to the doctor, where I was diagnosed with a sprain. Looking back, I wonder if a normal person may have been able to weather those falls much better. Otherwise, my bones have seemed strong and I've never had a break.
All the time as a teen thru 20- or 30-something, I would show off my flexibility by clasping my hands behind my back or making prayer hands behind my back or collapsing my hand down to fit inside a small glass, or bending my fingers way back and enjoy people's horrified reactions.
My joint problems really didn't show up until my 20s, when I injured my shoulder immediately upon trying out an aerobics class and it has never recovered (in recent years I've had several cortisone shots in it)... The only time I ever tried a trampoline, I hurt my knee on the very first jump. I was pretty much done with trampolines after that. I didn't think much of either injury though, just thought, well, I injured myself doing these things--other people do, too.
In my early 20s, I noticed horrible varicose veins developing on my legs. My skin was already thin and a bit translucent so these veins showed very clearly and some became very bulged and knotty. I ended up having a very painful surgical procedure to remove them from both legs at age 25. Now I know that vascular issues like that are associated with EDS. And what about that weird tumor that grew out of my back when I was 12? It was a blood vessel tumor. All red and spongy and bloody. WTF? That ain't normal.
I also had pleuripericarditis, an inflammation of the lining around my heart and lungs, when I was in my late 20s. You could hear a knocking noise come from my heart from across the room (ask Brian, he heard it standing in the doorway while I was in bed). Could be unrelated, I don't know. But ain't normal.
And all the vaso-vagal fainting... when I was a teen I used to have to lie down in the shower to avoid fainting... it's happened so many times in my life I cannot count all the times.
Also in my early 20s, I recall horrible lower back pain. It felt like it was compacting into itself all the time. Not sure how I managed to get rid of that but it doesn't bother me much anymore (hope I don't pay for saying that)... Now it's moved up to my upper back--I used to suffer horribly at my desk at Medtronic until I got a better chair. The pain was so bad it felt like torture but the chair honestly made it go away. I got that same chair at the U and it really does help... I also need to use a rollerbar mouse or else I get tendonitis in my hands. I've been off work for two days now with tendonitis in my left hand and wrist because I've been using my laptop too much... time to get a special keyboard/mouse to use with my laptop.
When I got pregnant with Caitlin (I think I was 26) at about 5 months along I began having pain with every step, right in the middle of my crotch--the pubic bone. That is when I learned that there are two pieces to the pubic bone and there is cartilage between, which is supposed to soften up for the delivery to better facilitate a baby coming through. But mine softened far too early and it was very painful to walk, but I had no choice: I had 2 kids already and a busy job as a legal secretary. I carried that baby around like that, pain with every step, to full term and then some. Now I know that was from EDS.
After I had Caitlin, I stayed home for two years, working out of the home, making good money but never leaving the house--and got fat. Almost 200 lbs.
Then, in my early 30s I had lost a lot of weight through dieting and walking; I was a walking fanatic and would try to power walk at least three miles a day. I made walking dates with any friend who would walk with me and it was a great outlet for me, in many ways. But all of a sudden I began having groin pain, in the inside part of the hip joint. It felt loose and just... painful. And it wasn't just with each step, either. The hip pain was keeping me awake at night; I couldn't get into a position where it didn't feel like my leg was hanging out of joint and throbbing; I had to prop my legs up with pillows for relief. I ended up stopping the walking because of it, very regretfully. (That was the end of the best shape I'll ever be in, sad to think.) A visit to the doctor just got me shrugs and being told "You don't have arthritis, so go away because we don't know what else to do with you."
After a few weeks/months, I don't remember but it seemed like forever, it went away and I felt normal again, but I never felt the passion for walking again like I had and I was afraid of the pain returning, so I didn't "push it" very much physically anymore. Still, the groin pain would sometimes return, along with knee pain, shoulder pain, elbow pain (first noticed in late 30s while carrying heavy grocery bags) and now lately, hand and wrists as well. Oh and let's not forget my feet. There are always painful/tender joints in there, and a couple of years ago, I had capsullitis (sp?), an inflammation of a joint that was in the ball of my foot--kinda hard to avoid when you need to walk. Felt like I just had a piece of bare bone sticking out the bottom of my foot and I was walking on hard cement on it. I have to wear special orthotics now to prevent that from happening again.
All of this pain comes and goes and has gotten to the point where now, something always hurts, if not multiple things.
My neck has given me multiple issues which have sent me to many chiropractors and orthopedic doctors. At times my neck has been so sore I've had to wear a cervical collar just to hold my head up without excruciating pain. I was diagnosed years ago with stenosis. Last year after having tinglings and numbness in my left thumb and forefinger, and nerve pain along my arm, I was shown to have a bulging disc at C5/6, with a bone spur immediately opposite it, pinching the nerve in between. A cortisone shot was unsuccessful, so I did physical therapy and my symptoms improved. However, now I think they are coming back. I've had nerve pain along my left arm like I did before.
Over time, I have missed a lot of work due to EDS related symptoms. I just didn't know it.
The weight has gradually crept back on--not as bad as it had been--but about 20 of the 70 I lost has returned. BUT much of that weight is fat, not muscle, because I have progressively weakened. I first noticed the weakening in my late 30s, maybe 38, while gardening and cooking. I used to have really strong hands. All of a sudden the brute strength I used to take for granted was just not there. It was a scary moment and I wondered to myself what was wrong with me, and was it going to progress? (It has.) I remember thinking about some of my symptoms together for the first time then and knowing SOMETHING was wrong, really wrong. But again, trips to the doctor end up with shrugs, tests look fine, go home and get some exercise.
Somewhere along the line, I started losing energy and not being able to keep up on busy days like I used to. Having to stop and rest often when working around the house. Collapsing the moment I get home from the Mall. Being too tired to do anything in the evenings after a long day of work. Having to lie down after a shower to catch my breath. The fatigue has kept me from going out and making plans with friends. I just know I won't have the energy. When I do get together with friends, I'm exhausted by the time we part ways. Just making conversation/listening can be exhausting. I don't go to parties very much anymore because I just don't have it in me to go and stay for more than an hour or so before I start desperately wanting to leave and go home to rest. My whole life has changed because I am fatigued all the time.
Also, it doesn't help that the more pain I've had, the less active I've been, and the less active I've been, the more muscle mass and strength I've lost, which just makes the joint pain worse because there's less support and more wear and tear on cartilage, ligaments and tendons, which makes it hurt more, etc. Now I'm in PT and trying to strengthen the muscles around those joints, but then I hear people in my EDS groups saying that it's not recommended that EDS folks do any strength training--because it can just make things worse--and I don't know what I should be doing or who I should listen to, and I want to scream, because I don't WANT to just become a mushy little bag of bones in a wheelchair! I want to be strong and active and pain free! I want to achieve the dreams I've nursed along these past couple of decades working for The Man, trying to make ends meet, and squirreling away as much as I can here and there for my retirement, the Dream, what I'm doing all of this for... that wonderful time, the light at the end of the tunnel, when I'm done working for anyone else and can just do what I want. And there was so much I wanted to do with Phil, so much traveling and hiking and gardening and JUST PLAIN LIVING!!! And now I can barely make dinner most nights because I'm too exhausted and my hands hurt too much to chop and carry heavy pans back and forth, and my teenage daughter has taken to bringing me things instead of the other way around sometimes. I have to ask her to do things now not just because she should do something to help out... but because I cannot do them, or more accurately, I cannot do them without pain and further irreversible injury.
That's the thing... each strain, each overstretch, each trauma, is cumulatively damaging. It doesn't go the other way--it doesn't heal itself--it just keeps getting worse. It's living with that knowledge, that knowing that I can't even just "work hard" to get better, other than doing my PT and hoping to God it's not going to backfire, that there's no option for healing, just managing the cascading symptoms that each issue produces and trying to keep it from worsening further. All of us with EDS struggle with, when do I stop working, when do I give in and stop trying to pretend I'm normal while damaging myself, when do I consider myself disabled?? When do I hire help? Should I NOT do this and that which I enjoy NOW, so that I might be able to do them or other things later on into my lifetime? Or should I live life to the fullest now as much as I can and damn the consequences? Where should I draw the line between living and possibly ending up in a wheelchair basically waiting to die?
And I feel sad and guilty when I think about Phil's future, which is probably going to suck now because I won't be able to do anything and he will have to take care of me. And this is why I feel like I'd be better off dead sometimes. What the future holds seems so bleak and I hate the idea of being a burden on loved ones. But I know those people love me and it would be much harder on them if I did something stupid like that. I have to keep going, for THEM, even while I know I'm dragging them down just by living. Ugh. No really, UGH. It's hard to wrap my brain around this sometimes... It's so not what I had imagined, and so awful, and why didn't I understand before this what people who are ill/disabled go through? Why did it have to happen to me for me to really understand it? Was that really necessary, God? (Ha, God... I know God doesn't exist because if She did, She would never have given me the life I've had, and I'm not just talking about EDS--I'm a good person and never deserved any of this.)
I should also mention that my IBS has been often nearly unbearable, and I will go through periods where it's so bad that I don't even have an appetite anymore, partly because I just don't like most foods very much anymore, but also because I associate food with pain. So a lot of the time I don't eat or I will eat just to throw something in there because I know I have to. That is probably the only thing that keeps me from overt obesity, given my relative lack of activity and those damn late-night binges. Many times I get overly hungry (and probably emotional cuz that is just par for the course these days) and binge on foods I shouldn't. Which of course brings on another horrible painful bout that keeps me up half the night (and I already have problems with insomnia, thankyouverymuch). I really need to get a handle on my nutrition. I know better. And I know how important nutrition is to health--probably THE most important factor. It's just... work, and it's really hard to plan ahead for meals when the thought of most foods just does not appeal to me. I wish I were rich and could hire someone to plan, shop and prepare healthy meals for me (that taste good too so I will want to eat it).
I can't wait to see the rheumatologist I'm going to be seeing on March 6. I hear she is really good--she has a good rep. Between her and my new primary care physician, I have a lot I want to check out. I want an echocardiogram to check out my heart and vascular system and make sure it's all working OK. I want a skin biopsy or whatever test they need to do to see if they can confirm what kind of EDS I have, and rule out vascular type; even though I have many of the symptoms, I'm still alive so that's probably not the one--it's rare to live to see 44 with vascular types. But still, I want to know, I'm sick of the back-of-my-mind worry. I also want an endocrinological workup. Am I absorbing nutrients properly? How are my hormones? My IBS gets far worse around my menses, and my sex drive is low. I'd like to have my intestines looked at somehow and make sure they look normal since they give me such grief. And, I want to bring up my temperature-control and blood-pressure/vaso-vagal issues and suggest that I could be diagnosed with dysautonomia. I almost think that one is a slam dunk based on my symptoms and what I have read about it.
I'm also taking Caitlin to get checked out too. She is finally willing to be open to the possibility (she's suffered groin pain for a couple of years; knees also, and now complains of her shoulder--plus she is also hypermobile). I'm not going to talk to Melinda about it anymore (even though I'm pretty sure she is hypermobile too) as she has made her position very clear: she doesn't have it and stop talking about it, end of discussion. Okay. And Casey and I aren't speaking anyway, but I have sent the message through Brian that he should be checked out. I think it's suspicious that the tumor he had grew out of connective tissue, and also his skin I have always thought was really soft and almost doughy; plus he has exhibited resistance to novocaine, which is common in EDS (he and I both need extra injections for it to work). No, he doesn't have many joint issues, but boys with EDS often have less joint issues than girls because they are naturally more muscular and have better joint support. I'm also pretty sure he has GERD, which is also related to EDS. Even before I knew about the EDS I begged him to get the GERD checked out, but he ignored me. He is stubborn and I know he will not pursue finding out if he has EDS.
Click to viewI should note that there are many of us who were asymptomatic as children (besides the joint hypermobility, which we just thought was cool), particularly the non-athletic ones such as myself. I have noticed the younger women in my EDS groups were all athletes of some type. The rest of us are middle-aged white ladies just now figuring out what's been plaguing us all these years, having had symptoms appear gradually throughout their lives/adulthood and worsening around their 40s; and most of us doing the legwork ourselves on the internet to find out about the disease and having the reaction "Oh my gawd this is me" and going to a doctor for confirmatory diagnosis, just like I did. I truly have never been in the company (even if it's only virtual "company") of so many others with whom I felt so much in common. But, I digress.
As a child, I wasn't athletic, besides climbing trees and rocks, and never really had joint issues. I had the dental (high, vaulted arch with overcrowded teeth requiring serial extraction--common with EDSers) and vision (extreme nearsightedness beginning in elementary school) problems associated with the EDS but we had no idea they were anything but just dental and vision problems. So the joint problems didn't really show up when I was a kid, aside from having to cut short a brownie troop rollerskating event at age 7 because (keep in mind I had never skated before in my life) I fell with my full body weight on my hand twice and sprained my wrist, all before completing even one turn around the floor, and needed to be brought to the doctor, where I was diagnosed with a sprain. Looking back, I wonder if a normal person may have been able to weather those falls much better. Otherwise, my bones have seemed strong and I've never had a break.
All the time as a teen thru 20- or 30-something, I would show off my flexibility by clasping my hands behind my back or making prayer hands behind my back or collapsing my hand down to fit inside a small glass, or bending my fingers way back and enjoy people's horrified reactions.
My joint problems really didn't show up until my 20s, when I injured my shoulder immediately upon trying out an aerobics class and it has never recovered (in recent years I've had several cortisone shots in it)... The only time I ever tried a trampoline, I hurt my knee on the very first jump. I was pretty much done with trampolines after that. I didn't think much of either injury though, just thought, well, I injured myself doing these things--other people do, too.
In my early 20s, I noticed horrible varicose veins developing on my legs. My skin was already thin and a bit translucent so these veins showed very clearly and some became very bulged and knotty. I ended up having a very painful surgical procedure to remove them from both legs at age 25. Now I know that vascular issues like that are associated with EDS. And what about that weird tumor that grew out of my back when I was 12? It was a blood vessel tumor. All red and spongy and bloody. WTF? That ain't normal.
I also had pleuripericarditis, an inflammation of the lining around my heart and lungs, when I was in my late 20s. You could hear a knocking noise come from my heart from across the room (ask Brian, he heard it standing in the doorway while I was in bed). Could be unrelated, I don't know. But ain't normal.
And all the vaso-vagal fainting... when I was a teen I used to have to lie down in the shower to avoid fainting... it's happened so many times in my life I cannot count all the times.
Also in my early 20s, I recall horrible lower back pain. It felt like it was compacting into itself all the time. Not sure how I managed to get rid of that but it doesn't bother me much anymore (hope I don't pay for saying that)... Now it's moved up to my upper back--I used to suffer horribly at my desk at Medtronic until I got a better chair. The pain was so bad it felt like torture but the chair honestly made it go away. I got that same chair at the U and it really does help... I also need to use a rollerbar mouse or else I get tendonitis in my hands. I've been off work for two days now with tendonitis in my left hand and wrist because I've been using my laptop too much... time to get a special keyboard/mouse to use with my laptop.
When I got pregnant with Caitlin (I think I was 26) at about 5 months along I began having pain with every step, right in the middle of my crotch--the pubic bone. That is when I learned that there are two pieces to the pubic bone and there is cartilage between, which is supposed to soften up for the delivery to better facilitate a baby coming through. But mine softened far too early and it was very painful to walk, but I had no choice: I had 2 kids already and a busy job as a legal secretary. I carried that baby around like that, pain with every step, to full term and then some. Now I know that was from EDS.
After I had Caitlin, I stayed home for two years, working out of the home, making good money but never leaving the house--and got fat. Almost 200 lbs.
Then, in my early 30s I had lost a lot of weight through dieting and walking; I was a walking fanatic and would try to power walk at least three miles a day. I made walking dates with any friend who would walk with me and it was a great outlet for me, in many ways. But all of a sudden I began having groin pain, in the inside part of the hip joint. It felt loose and just... painful. And it wasn't just with each step, either. The hip pain was keeping me awake at night; I couldn't get into a position where it didn't feel like my leg was hanging out of joint and throbbing; I had to prop my legs up with pillows for relief. I ended up stopping the walking because of it, very regretfully. (That was the end of the best shape I'll ever be in, sad to think.) A visit to the doctor just got me shrugs and being told "You don't have arthritis, so go away because we don't know what else to do with you."
After a few weeks/months, I don't remember but it seemed like forever, it went away and I felt normal again, but I never felt the passion for walking again like I had and I was afraid of the pain returning, so I didn't "push it" very much physically anymore. Still, the groin pain would sometimes return, along with knee pain, shoulder pain, elbow pain (first noticed in late 30s while carrying heavy grocery bags) and now lately, hand and wrists as well. Oh and let's not forget my feet. There are always painful/tender joints in there, and a couple of years ago, I had capsullitis (sp?), an inflammation of a joint that was in the ball of my foot--kinda hard to avoid when you need to walk. Felt like I just had a piece of bare bone sticking out the bottom of my foot and I was walking on hard cement on it. I have to wear special orthotics now to prevent that from happening again.
All of this pain comes and goes and has gotten to the point where now, something always hurts, if not multiple things.
My neck has given me multiple issues which have sent me to many chiropractors and orthopedic doctors. At times my neck has been so sore I've had to wear a cervical collar just to hold my head up without excruciating pain. I was diagnosed years ago with stenosis. Last year after having tinglings and numbness in my left thumb and forefinger, and nerve pain along my arm, I was shown to have a bulging disc at C5/6, with a bone spur immediately opposite it, pinching the nerve in between. A cortisone shot was unsuccessful, so I did physical therapy and my symptoms improved. However, now I think they are coming back. I've had nerve pain along my left arm like I did before.
Over time, I have missed a lot of work due to EDS related symptoms. I just didn't know it.
The weight has gradually crept back on--not as bad as it had been--but about 20 of the 70 I lost has returned. BUT much of that weight is fat, not muscle, because I have progressively weakened. I first noticed the weakening in my late 30s, maybe 38, while gardening and cooking. I used to have really strong hands. All of a sudden the brute strength I used to take for granted was just not there. It was a scary moment and I wondered to myself what was wrong with me, and was it going to progress? (It has.) I remember thinking about some of my symptoms together for the first time then and knowing SOMETHING was wrong, really wrong. But again, trips to the doctor end up with shrugs, tests look fine, go home and get some exercise.
Somewhere along the line, I started losing energy and not being able to keep up on busy days like I used to. Having to stop and rest often when working around the house. Collapsing the moment I get home from the Mall. Being too tired to do anything in the evenings after a long day of work. Having to lie down after a shower to catch my breath. The fatigue has kept me from going out and making plans with friends. I just know I won't have the energy. When I do get together with friends, I'm exhausted by the time we part ways. Just making conversation/listening can be exhausting. I don't go to parties very much anymore because I just don't have it in me to go and stay for more than an hour or so before I start desperately wanting to leave and go home to rest. My whole life has changed because I am fatigued all the time.
Also, it doesn't help that the more pain I've had, the less active I've been, and the less active I've been, the more muscle mass and strength I've lost, which just makes the joint pain worse because there's less support and more wear and tear on cartilage, ligaments and tendons, which makes it hurt more, etc. Now I'm in PT and trying to strengthen the muscles around those joints, but then I hear people in my EDS groups saying that it's not recommended that EDS folks do any strength training--because it can just make things worse--and I don't know what I should be doing or who I should listen to, and I want to scream, because I don't WANT to just become a mushy little bag of bones in a wheelchair! I want to be strong and active and pain free! I want to achieve the dreams I've nursed along these past couple of decades working for The Man, trying to make ends meet, and squirreling away as much as I can here and there for my retirement, the Dream, what I'm doing all of this for... that wonderful time, the light at the end of the tunnel, when I'm done working for anyone else and can just do what I want. And there was so much I wanted to do with Phil, so much traveling and hiking and gardening and JUST PLAIN LIVING!!! And now I can barely make dinner most nights because I'm too exhausted and my hands hurt too much to chop and carry heavy pans back and forth, and my teenage daughter has taken to bringing me things instead of the other way around sometimes. I have to ask her to do things now not just because she should do something to help out... but because I cannot do them, or more accurately, I cannot do them without pain and further irreversible injury.
That's the thing... each strain, each overstretch, each trauma, is cumulatively damaging. It doesn't go the other way--it doesn't heal itself--it just keeps getting worse. It's living with that knowledge, that knowing that I can't even just "work hard" to get better, other than doing my PT and hoping to God it's not going to backfire, that there's no option for healing, just managing the cascading symptoms that each issue produces and trying to keep it from worsening further. All of us with EDS struggle with, when do I stop working, when do I give in and stop trying to pretend I'm normal while damaging myself, when do I consider myself disabled?? When do I hire help? Should I NOT do this and that which I enjoy NOW, so that I might be able to do them or other things later on into my lifetime? Or should I live life to the fullest now as much as I can and damn the consequences? Where should I draw the line between living and possibly ending up in a wheelchair basically waiting to die?
And I feel sad and guilty when I think about Phil's future, which is probably going to suck now because I won't be able to do anything and he will have to take care of me. And this is why I feel like I'd be better off dead sometimes. What the future holds seems so bleak and I hate the idea of being a burden on loved ones. But I know those people love me and it would be much harder on them if I did something stupid like that. I have to keep going, for THEM, even while I know I'm dragging them down just by living. Ugh. No really, UGH. It's hard to wrap my brain around this sometimes... It's so not what I had imagined, and so awful, and why didn't I understand before this what people who are ill/disabled go through? Why did it have to happen to me for me to really understand it? Was that really necessary, God? (Ha, God... I know God doesn't exist because if She did, She would never have given me the life I've had, and I'm not just talking about EDS--I'm a good person and never deserved any of this.)
I should also mention that my IBS has been often nearly unbearable, and I will go through periods where it's so bad that I don't even have an appetite anymore, partly because I just don't like most foods very much anymore, but also because I associate food with pain. So a lot of the time I don't eat or I will eat just to throw something in there because I know I have to. That is probably the only thing that keeps me from overt obesity, given my relative lack of activity and those damn late-night binges. Many times I get overly hungry (and probably emotional cuz that is just par for the course these days) and binge on foods I shouldn't. Which of course brings on another horrible painful bout that keeps me up half the night (and I already have problems with insomnia, thankyouverymuch). I really need to get a handle on my nutrition. I know better. And I know how important nutrition is to health--probably THE most important factor. It's just... work, and it's really hard to plan ahead for meals when the thought of most foods just does not appeal to me. I wish I were rich and could hire someone to plan, shop and prepare healthy meals for me (that taste good too so I will want to eat it).
I can't wait to see the rheumatologist I'm going to be seeing on March 6. I hear she is really good--she has a good rep. Between her and my new primary care physician, I have a lot I want to check out. I want an echocardiogram to check out my heart and vascular system and make sure it's all working OK. I want a skin biopsy or whatever test they need to do to see if they can confirm what kind of EDS I have, and rule out vascular type; even though I have many of the symptoms, I'm still alive so that's probably not the one--it's rare to live to see 44 with vascular types. But still, I want to know, I'm sick of the back-of-my-mind worry. I also want an endocrinological workup. Am I absorbing nutrients properly? How are my hormones? My IBS gets far worse around my menses, and my sex drive is low. I'd like to have my intestines looked at somehow and make sure they look normal since they give me such grief. And, I want to bring up my temperature-control and blood-pressure/vaso-vagal issues and suggest that I could be diagnosed with dysautonomia. I almost think that one is a slam dunk based on my symptoms and what I have read about it.
I'm also taking Caitlin to get checked out too. She is finally willing to be open to the possibility (she's suffered groin pain for a couple of years; knees also, and now complains of her shoulder--plus she is also hypermobile). I'm not going to talk to Melinda about it anymore (even though I'm pretty sure she is hypermobile too) as she has made her position very clear: she doesn't have it and stop talking about it, end of discussion. Okay. And Casey and I aren't speaking anyway, but I have sent the message through Brian that he should be checked out. I think it's suspicious that the tumor he had grew out of connective tissue, and also his skin I have always thought was really soft and almost doughy; plus he has exhibited resistance to novocaine, which is common in EDS (he and I both need extra injections for it to work). No, he doesn't have many joint issues, but boys with EDS often have less joint issues than girls because they are naturally more muscular and have better joint support. I'm also pretty sure he has GERD, which is also related to EDS. Even before I knew about the EDS I begged him to get the GERD checked out, but he ignored me. He is stubborn and I know he will not pursue finding out if he has EDS.