wash your hands and stay inside. sorry i was gone for a million years. love yall. My Site abbyhsams.com My Shop! abbyhsams.com/... Follow Me! / abby_sams / abby__sams
Hoping this isn't too personal, but how old were you when you ended up utilizing a wheelchair with hEDS? I was recently diagnosed, about a year ago, and currently it has been affecting mostly my fingers, wrists, ankles, ribs, and neck a bit. I have had relatively few bad days so far, where I just couldn't get out of bed or barely move. I also used to think it was super cool to dislocate my joints as a kid because I just didn't know, and did a lot of strenuous activities. I am really stubborn, been in a wheelchair twice before, and was just wondering how it progressed because it's super hard to find anyone who has this - as well as doctors who won't further fight and argue with me about the diagnosis
i believe I started using a wheelchair shortly after my diagnosis bc I was already using arm crutches and my legs just did not work at all. Now, after lots of physical therapy, i am able to walk pretty far but still prefer a wheelchair on longer days and all my sports are adaptive
Hi, Abby. I suffer from a lot of pain in my knees and calves from various injuries. I read an article about how magnesium could help so I picked some up at the drug store and took 400 mg. Within about 15 minutes I started getting relief. It was amazing. I couldn't believe that a vitamin could also alleviate pain. It turns out that most people are short on magnesium. I now take it every day and have added Vitamin D, which has a similar response, and feel like a new person. If your doctor doesn't have any objections, you may want to give it a try.
hey I actually take Magnesium supplements to help my migraines but they do not touch my bodily pain at all. Also, it doesnt bother me too much but I would recommend straying away from giving medical advice when it is not specifically asked for as it can be a very tense subject for a lot of people. I know you're well meaning but others may not see it that way
@@AbbySams I don't think this kind of discourse is harmful. I've actually found more help for my health issues in comment section then in the videos lol. Not that I take any one commentors advice as truth- but when you see a hundred comments about pain related conditions being improved by magnesium and vitamin d, it definitely gets me to do some homework, and talk to my doctor. People can use their own judgement, and ignore what they find irrelevant. Policing polite responses is a waste of everyone's time and energy.
I've been trying to talk to my doc about potentially having heds, and they absolutely won't listen. I've been to a rheumatologist and a cardiologist so far. the rheumatologist did say I'm hypermobile in many of my joints, but i cannot get any further than that. do you have any suggestions as to what specific type of doc i should go to?? i know that they haven't found the gene for heds yet, but i see a geneticist was able to diagnose you?? any help or advice is welcome. i just want answers, whatever they may be.
it took me 7 years of actively searching until a doctor finally listened to me. I got sent to a geneticist bc my pain dr thought something was off and he happened to be an EDS specialist and diagnosed me pretty quickly after giving me a once over. just keep advocating for yourself. if one doctor doesn't listen then go to another and so on
@@AbbySams it's so wild and insane to me that it takes SOOOOO incredibly long to get a diagnosis for this. I'm in many groups for eds/heds and they all say the same thing. unfortunately the area i live in only has doctors that you have to pay like $600+ out off pocket per consult, and that's just way out of my means. so i guess I'll just keep trying? thankyou for the advice.
Hoping this isn't too personal, but how old were you when you ended up utilizing a wheelchair with hEDS? I was recently diagnosed, about a year ago, and currently it has been affecting mostly my fingers, wrists, ankles, ribs, and neck a bit. I have had relatively few bad days so far, where I just couldn't get out of bed or barely move. I also used to think it was super cool to dislocate my joints as a kid because I just didn't know, and did a lot of strenuous activities. I am really stubborn, been in a wheelchair twice before, and was just wondering how it progressed because it's super hard to find anyone who has this - as well as doctors who won't further fight and argue with me about the diagnosis
i believe I started using a wheelchair shortly after my diagnosis bc I was already using arm crutches and my legs just did not work at all. Now, after lots of physical therapy, i am able to walk pretty far but still prefer a wheelchair on longer days and all my sports are adaptive
Hi, Abby. I suffer from a lot of pain in my knees and calves from various injuries. I read an article about how magnesium could help so I picked some up at the drug store and took 400 mg. Within about 15 minutes I started getting relief. It was amazing. I couldn't believe that a vitamin could also alleviate pain. It turns out that most people are short on magnesium. I now take it every day and have added Vitamin D, which has a similar response, and feel like a new person. If your doctor doesn't have any objections, you may want to give it a try.
hey I actually take Magnesium supplements to help my migraines but they do not touch my bodily pain at all. Also, it doesnt bother me too much but I would recommend straying away from giving medical advice when it is not specifically asked for as it can be a very tense subject for a lot of people. I know you're well meaning but others may not see it that way
@@AbbySams I don't think this kind of discourse is harmful. I've actually found more help for my health issues in comment section then in the videos lol. Not that I take any one commentors advice as truth- but when you see a hundred comments about pain related conditions being improved by magnesium and vitamin d, it definitely gets me to do some homework, and talk to my doctor. People can use their own judgement, and ignore what they find irrelevant. Policing polite responses is a waste of everyone's time and energy.
I've been trying to talk to my doc about potentially having heds, and they absolutely won't listen. I've been to a rheumatologist and a cardiologist so far. the rheumatologist did say I'm hypermobile in many of my joints, but i cannot get any further than that. do you have any suggestions as to what specific type of doc i should go to?? i know that they haven't found the gene for heds yet, but i see a geneticist was able to diagnose you?? any help or advice is welcome. i just want answers, whatever they may be.
it took me 7 years of actively searching until a doctor finally listened to me. I got sent to a geneticist bc my pain dr thought something was off and he happened to be an EDS specialist and diagnosed me pretty quickly after giving me a once over. just keep advocating for yourself. if one doctor doesn't listen then go to another and so on
@@AbbySams it's so wild and insane to me that it takes SOOOOO incredibly long to get a diagnosis for this. I'm in many groups for eds/heds and they all say the same thing. unfortunately the area i live in only has doctors that you have to pay like $600+ out off pocket per consult, and that's just way out of my means. so i guess I'll just keep trying? thankyou for the advice.
aaah we missed you! glad ur back :)
Where are you now?