I have been dx with a CTD but they still don't know which one. I know what you mean about the pain in everyday life. I feel the same way about complaining. I know my family and friends are tired of hearing about my problems. I have a lot of hypermobility in my joints but no loose skin.
you are an amazing, beautiful and brave woman. thanks for helping raise awareness about HEDS. I look forward to the day we can meet and i can give u a real hug! Until then i am sending u MUCH LOVE & ZEBRA HUGS!
It's taken over 50 years for me to get a diagnosis. Dr's in the Uk do 20 mins in their training on connective tissue disorders! Like you I thought it was normal to have pain and like you I rarely complained. Getting to grips with the pain is important! Dr's who dish out advice about getting personal trainers when they have no idea what it feels like aren't helpful. Try exercise in a very warm pool. I enter in agony and get out pain free. Better than painkillers and keeps you fit!
wow. speaking my thoughts. in the genetics clinic now to find out, they sent me to cardio who left a msg on my f'n answering machine there are a "couple abnormalities" I was already aware of and pretending weren't there. I can barely type atm as well, fingertips bending backwards. Be greatful for your fiance. Personally I don't want a child I couldn't even lift, I can't even take care of me. The gene pool ends here. I didn't know it was as bad as EDS at the time, got my tubes tied at 21..
@drgn420 I'm so sorry to hear you are going through the same thing. It really sucks. I went to my primary care physician today and asked for a cardio referral. I don't know about children yet, it doesn't look good at all, unless they find a cure for EDS and fibro soon. I still can't say I'll never have kids because I keep hoping for a cure. I hope things go okay at the doctor's office. Take care.
i feel the same way, with the picking up the milk jug or pouring water for my dad.. it hurts, but if i complain, my rents theink im just making up another symption because i have never told them about it before.. because I THOUGHT THE PAIN WAS NORMAL! isnt that sad..
all my life i have lived with this, this pain thinking this is how everyone feels. when i was younger my rents said i used to complain, and the doc said it was growing pain, and they had to take me to a specialist because i was pigeon toed, and i have had so many health problems in my life, so i was always told i was just clumsy.
@musiclover2392 I was always told I was clumsy, too, I can totally relate. I also relate with being told it was growing pains. Now we know it was a lot more!
all my life i have lived with this, this pain thinking this is how everyone feels. when i was younger my rents said i used to complain, and the doc said it was growing pain, and they had to take me to a specialist because i was pigeon toed, and i have had so many health problems in my life, so i was always told i was just clumsy.
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to."
I do understand we are looking at this with my child. Pleas dont stop be you to your abilaty! God wants us here for something. Maybe to work with others like us. Sandy Gillum mom Push but say hold me we will be there for you.
Thank you so much for your support. It really means a lot, I was really getting down. I hope that you had a Merry Christmas and that your child is okay. God Bless!!
I have been dx with a CTD but they still don't know which one. I know what you mean about the pain in everyday life. I feel the same way about complaining. I know my family and friends are tired of hearing about my problems. I have a lot of hypermobility in my joints but no loose skin.
ginaw911 4 months ago
you are an amazing, beautiful and brave woman. thanks for helping raise awareness about HEDS. I look forward to the day we can meet and i can give u a real hug! Until then i am sending u MUCH LOVE & ZEBRA HUGS!
muchlovezebrahugs 9 months ago
How are you doing now?
NJ5963 1 year ago
i feel the same way, i was just diagnosed a month ago....
vivisonga1111 1 year ago
It's taken over 50 years for me to get a diagnosis. Dr's in the Uk do 20 mins in their training on connective tissue disorders! Like you I thought it was normal to have pain and like you I rarely complained. Getting to grips with the pain is important! Dr's who dish out advice about getting personal trainers when they have no idea what it feels like aren't helpful. Try exercise in a very warm pool. I enter in agony and get out pain free. Better than painkillers and keeps you fit!
mrsbendychicken 1 year ago
Comment removed
drgn420 1 year ago
Comment removed
drgn420 1 year ago
wow. speaking my thoughts. in the genetics clinic now to find out, they sent me to cardio who left a msg on my f'n answering machine there are a "couple abnormalities" I was already aware of and pretending weren't there. I can barely type atm as well, fingertips bending backwards. Be greatful for your fiance. Personally I don't want a child I couldn't even lift, I can't even take care of me. The gene pool ends here. I didn't know it was as bad as EDS at the time, got my tubes tied at 21..
drgn420 1 year ago
@drgn420 I'm so sorry to hear you are going through the same thing. It really sucks. I went to my primary care physician today and asked for a cardio referral. I don't know about children yet, it doesn't look good at all, unless they find a cure for EDS and fibro soon. I still can't say I'll never have kids because I keep hoping for a cure. I hope things go okay at the doctor's office. Take care.
OzarksUSA 1 year ago
and i have chronic headaches all day.. everyday.. so ya .. i get it..thanks :)
musiclover2392 2 years ago
I hope your headaches get under control soon. Take care.
OzarksUSA 1 year ago
i was diagnosed with heds.. today
musiclover2392 2 years ago
How are you doing since your dx? I'm still getting used to knowing I have it and having to learn how to deal with my pain and limited mobility.
OzarksUSA 1 year ago
i feel the same way, with the picking up the milk jug or pouring water for my dad.. it hurts, but if i complain, my rents theink im just making up another symption because i have never told them about it before.. because I THOUGHT THE PAIN WAS NORMAL! isnt that sad..
musiclover2392 1 year ago
all my life i have lived with this, this pain thinking this is how everyone feels. when i was younger my rents said i used to complain, and the doc said it was growing pain, and they had to take me to a specialist because i was pigeon toed, and i have had so many health problems in my life, so i was always told i was just clumsy.
musiclover2392 1 year ago
@musiclover2392 I was always told I was clumsy, too, I can totally relate. I also relate with being told it was growing pains. Now we know it was a lot more!
OzarksUSA 1 year ago
all my life i have lived with this, this pain thinking this is how everyone feels. when i was younger my rents said i used to complain, and the doc said it was growing pain, and they had to take me to a specialist because i was pigeon toed, and i have had so many health problems in my life, so i was always told i was just clumsy.
musiclover2392 1 year ago
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
musiclover2392 1 year ago
@musiclover2392 I understand what you mean. How are you dealing with the dx?
OzarksUSA 1 year ago
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
musiclover2392 1 year ago
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So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to." but they did i just thought it was normal. but its because me rents don't understand.. so i got into a genectics coulsor maybe they will be able to explain it to my rents.. cause ERRR
musiclover2392 1 year ago
So now i no this pain i have isn't supossed to be there, and if mention something like wow my hands or my fingers really hurt, my rents will be like well "they never used to."
musiclover2392 1 year ago
@musiclover2392 I know what you mean...all my life I thought all this stuff was normal, too, then WOW found out it wasn't!
OzarksUSA 1 year ago
@musiclover2392 I know what you mean...all my life I thought all this stuff was normal, too, then WOW found out it wasn't!
OzarksUSA 1 year ago
I do understand we are looking at this with my child. Pleas dont stop be you to your abilaty! God wants us here for something. Maybe to work with others like us. Sandy Gillum mom Push but say hold me we will be there for you.
meganthebitch2 2 years ago 2
Thank you so much for your support. It really means a lot, I was really getting down. I hope that you had a Merry Christmas and that your child is okay. God Bless!!
OzarksUSA 2 years ago