[I'm new here and wrote a bit of an essay, my apologies and thanks in advance for your patience!]
I'm 28 years old. I've experienced autoimmune-like symptoms (e.g., joint pain, sausage fingers, plus a whole slew of other things I won't get into) on and off for the past six years or so and have seen two different rheumatologists, who didn't diagnose anything other than Raynaud's and Joint Hypermobility Syndrome. My symptoms seem to be exacerbated by hormone imbalances (e.g., when I had an IUD for a few months - my body seems especially sensitive to progesterone) and inactivity. Right now for example, while more sedentary due to COVID-19, I've been experiencing more joint pain because my muscles are losing tone. My shoulders are especially lax and prone to injury. I have flat feet and have been diagnosed with chrondomalacia patella in the past.
What's been concerning me lately is how prominent my veins are getting. I am thin and have pale skin, so they've always been somewhat more visible than the average person's, but in the past year or so many more veins have become visible. In the last month or two, it's been accelerating especially fast. Veins are appearing on my forehead and beside my mouth, my eyes look constantly bloodshot, and the veins in my hands, forearms, feet, and ankles have been bulging more and more. This happens even when it's cool and I haven't exercised (as in attached photo), and especially in the morning and at night. I've become fairly fixated on it, because the way it's progressing freaks me out and it makes me feel unfeminine and unattractive. Around the same time, I've become aware of how lax the skin on my face is. I know that happens with age, but I've always been told I look a lot younger than I am, and I feel like all at once I look my age or older. When I jump, the skin on my cheeks waggles up and down and this has gotten more noticeable in the past little couple years as well (does this happen to anyone else? I'm dying to know) - I've always been thin so it's not an issue of having excess skin.
All this to say, I've wondered for a while if I have some kind of connective tissue problem, and have recently been thinking that EDS seems likely. I'm hoping not vascular, although I can't say that it hasn't crossed my mind because of the vein thing. I'm NOT looking for a diagnosis, but would love to get input from people who experience EDS in various forms to get a sense of what I should consider. If it helps, I am physically active and have done fairly high intensity exercise (e.g., plyometrics, HIIT workouts, spin classes, dancing) since ~age 20. I don't know of a family history of anything, but when complaining about the skin laxity, my mom and older sister both said they have the same issue. Both my parents are thin and have visible veins (especially my dad) - granted, they are also in their 60s. My paternal grandfather died suddenly and unexpectedly in his sleep at age 65, despite being healthy and very physically fit. An autopsy was never conducted, so we don't know the cause of death.
Other symptoms potentially of note (non-exhaustive list):
- Soft cheeks (according to my sister)
- GI problems (i.e., frequent diarrhea) that I can't identify clear triggers for
- Hair loss (recently diagnosed with scarring alopecia)
- One hand or foot that randomly gets red and warm at night (my mom experiences this too, much more often)
- Bumps appearing on the tops of my toes (some bony, some soft and moveable)
- VERY infrequent heart palpitations, which last only a couple of seconds at a time
- Eyes not fully focusing on about 50% of days (and I just had my prescription updated)
- Brain fog on a significant % of days, where I struggle to remember things and find the words to articulate myself
I recognize that this post may make me sound like a hypochondriac, and believe me I get that reaction frequently from the people in my life. But EDS really seems plausible to me, especially since discovering this community and reading others' posts and the "useful links". If anyone can relate to me or recommend next steps, I would really appreciate it! Thanks so much!
Just chillin' in a cool environment. I have photos where they look even more bulgy (when I'm standing).
[I'm new here and wrote a bit of an essay, my apologies and thanks in advance for your patience!]I'm 28 years old. I've experienced autoimmune-like symptoms (e.g., joint pain, sausage fingers, plus a whole slew of other things I won't get into) on and off for the past six years or so and have seen two different rheumatologists, who didn't diagnose anything other than Raynaud's and Joint Hypermobility Syndrome. My symptoms seem to be exacerbated by hormone imbalances (e.g., when I had an IUD for a few months - my body seems especially sensitive to progesterone) and inactivity. Right now for example, while more sedentary due to COVID-19, I've been experiencing more joint pain because my muscles are losing tone. My shoulders are especially lax and prone to injury. I have flat feet and have been diagnosed with chrondomalacia patella in the past.What's been concerning me lately is how prominent my veins are getting. I am thin and have pale skin, so they've always been somewhat more visible than the average person's, but in the past year or so many more veins have become visible. In the last month or two, it's been accelerating especially fast. Veins are appearing on my forehead and beside my mouth, my eyes look constantly bloodshot, and the veins in my hands, forearms, feet, and ankles have been bulging more and more. This happens even when it's cool and I haven't exercised (as in attached photo), and especially in the morning and at night. I've become fairly fixated on it, because the way it's progressing freaks me out and it makes me feel unfeminine and unattractive. Around the same time, I've become aware of how lax the skin on my face is. I know that happens with age, but I've always been told I look a lot younger than I am, and I feel like all at once I look my age or older. When I jump, the skin on my cheeks waggles up and down and this has gotten more noticeable in the past little couple years as well (does this happen to anyone else? I'm dying to know) - I've always been thin so it's not an issue of having excess skin.All this to say, I've wondered for a while if I have some kind of connective tissue problem, and have recently been thinking that EDS seems likely. I'm hoping not vascular, although I can't say that it hasn't crossed my mind because of the vein thing. I'm NOT looking for a diagnosis, but would love to get input from people who experience EDS in various forms to get a sense of what I should consider. If it helps, I am physically active and have done fairly high intensity exercise (e.g., plyometrics, HIIT workouts, spin classes, dancing) since ~age 20. I don't know of a family history of anything, but when complaining about the skin laxity, my mom and older sister both said they have the same issue. Both my parents are thin and have visible veins (especially my dad) - granted, they are also in their 60s. My paternal grandfather died suddenly and unexpectedly in his sleep at age 65, despite being healthy and very physically fit. An autopsy was never conducted, so we don't know the cause of death.Other symptoms potentially of note (non-exhaustive list):Soft cheeks (according to my sister)GI problems (i.e., frequent diarrhea) that I can't identify clear triggers forHair loss (recently diagnosed with scarring alopecia)One hand or foot that randomly gets red and warm at night (my mom experiences this too, much more often)Bumps appearing on the tops of my toes (some bony, some soft and moveable)VERY infrequent heart palpitations, which last only a couple of seconds at a timeEyes not fully focusing on about 50% of days (and I just had my prescription updated)Brain fog on a significant % of days, where I struggle to remember things and find the words to articulate myselfI recognize that this post may make me sound like a hypochondriac, and believe me I get that reaction frequently from the people in my life. But EDS really seems plausible to me, especially since discovering this community and reading others' posts and the "useful links". If anyone can relate to me or recommend next steps, I would really appreciate it! Thanks so much!Just chillin' in a cool environment. I have photos where they look even more bulgy (when I'm standing). https://ift.tt/eA8V8J https://ift.tt/2YdTtYl
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