Just wondering... how does a person know the difference between fibromyalgia and EDS? I was diagnosed with fms at age 19 (3 years ago) but I've been having hard time believing it... I experience "bone pain" in my left knee and my muscles/joints get numb real easily if I sleep/lie in a bad position... FMS just seems like such a "we can't figure out what's wrong with you, so you must have fibromyalgia".. Plus I have that racing heart.
My 6 1/2 yr old daughter was diagnosed with EDS Type 3 today. She has been complaining of being in a lot of pain for awhile and has hypoglycemia of unknown origins which has prompted our search. I appreciate your honesty because the doctor was very dismissive of the long term effects and basically said no contact sports. :?
My comment continued: I have noticed that many with EDS have thyroid disease as well, but of course not all. Other members of my family are also affected by EDS. My grandmother passed this year with signs, my mother has signs as well. It is a frustrating, painful thing to have-to say the least. My 12 year old is much more affected than I am. We had no idea what this was until last year. I just thought the rest of us were too flexible, but she really suffers great fatigue. It hurts to see this.
I have 3 daughters and myself that are all affected with EDS III. I am thankful that you have posted this, since my 12 year old just got her heart monitor off and we are awaiting results. You might be interested to know we also have thyroid disease. A classic sign of thyroid disease for some people is a loss of the outer third of your eyebrows. Your video is not real clear, so I cannot tell for certain if you have this sign. TSH over 2 is suspect. FT4, FT3, and antibody tests are also helpful.
I do not have EDS, but I do have other medical conditions the worst being lymphocystic colitis and i am very ill with it in the past 5 months I have not been able to keep food in my system long enough to digest and have lost about 30 pounds hang in there and ty for posting your video diary
Thank you so much for this video. I have TMJ and hypermobility (normally come hand in hand) and I have a hunch that I have have a mild form of EDS. I know what it feels like to be in constant pain and young. Emotional and painful rollercoaster----just wanting to be back to "normal". I always ask, why the good people? It does test faith, but we just have to pray!!! Keep the awareness up!!!
hello i suffer from danlos type 3 as well, it hurts like hell im 23 now and it gets worse every fucking day, the pain is fucking horribul
Wtfgames 1 year ago
Is it mostly joints on your left side. It is on mine. Though gravity does like to take hold of my right shoulder.
Geszelda 1 year ago
Just wondering... how does a person know the difference between fibromyalgia and EDS? I was diagnosed with fms at age 19 (3 years ago) but I've been having hard time believing it... I experience "bone pain" in my left knee and my muscles/joints get numb real easily if I sleep/lie in a bad position... FMS just seems like such a "we can't figure out what's wrong with you, so you must have fibromyalgia".. Plus I have that racing heart.
mystery8881 1 year ago
My 6 1/2 yr old daughter was diagnosed with EDS Type 3 today. She has been complaining of being in a lot of pain for awhile and has hypoglycemia of unknown origins which has prompted our search. I appreciate your honesty because the doctor was very dismissive of the long term effects and basically said no contact sports. :?
CrowesPeak 1 year ago
I Have EDS #3 Too !
Great Video!!
cabc25er 1 year ago
My comment continued: I have noticed that many with EDS have thyroid disease as well, but of course not all. Other members of my family are also affected by EDS. My grandmother passed this year with signs, my mother has signs as well. It is a frustrating, painful thing to have-to say the least. My 12 year old is much more affected than I am. We had no idea what this was until last year. I just thought the rest of us were too flexible, but she really suffers great fatigue. It hurts to see this.
kozyfam 2 years ago
I have 3 daughters and myself that are all affected with EDS III. I am thankful that you have posted this, since my 12 year old just got her heart monitor off and we are awaiting results. You might be interested to know we also have thyroid disease. A classic sign of thyroid disease for some people is a loss of the outer third of your eyebrows. Your video is not real clear, so I cannot tell for certain if you have this sign. TSH over 2 is suspect. FT4, FT3, and antibody tests are also helpful.
kozyfam 2 years ago
I do not have EDS, but I do have other medical conditions the worst being lymphocystic colitis and i am very ill with it in the past 5 months I have not been able to keep food in my system long enough to digest and have lost about 30 pounds hang in there and ty for posting your video diary
kiwimumof4 2 years ago
I got diagnosed with EDS Type III at 13. I'm now 18 and still *trying* to live my life to the full.
kandinsky51 2 years ago
Hey there i my name is megan and i am 25 and i have eds type 3 with overlay of type 4! good luck girl
EDSGIRL021 2 years ago
Thank you so much for this video. I have TMJ and hypermobility (normally come hand in hand) and I have a hunch that I have have a mild form of EDS. I know what it feels like to be in constant pain and young. Emotional and painful rollercoaster----just wanting to be back to "normal". I always ask, why the good people? It does test faith, but we just have to pray!!! Keep the awareness up!!!
morganstubie 2 years ago
Woot! I'm 21 and have EDS
ReineDeLaSeine14 2 years ago
Thank you for creating much needed awareness of this rare syndrome
Great video by the way !!
remedy5678 2 years ago
Thank you! I wish I had a better webcam... I had to redo the video like seven times because I wasn't happy with it... LOL
jkweirich 2 years ago