Hi for context I have hEDS. I got an uppercervical x ray to check for abnormalities of any kind bc of my neck pain. I am not a medical professional and the radiologist noted that everything looked normal but I can’t help but notice my collarbone looks like it’s not attached to anything. Is this just me misunderstanding or is it abnormal? Just wanted a second opinion thanks so much
I got this curveball in my bloodwork. My doctor suspected I might have low iron lol. I’ve never heard of anyone having high iron, & ferritin is normal so I don’t really understand. Plus, I have hEDS & POTS so I was more expecting either normal labs or low iron/ferritin. Does anyone have any insight?
I know this is a bit of a weird question, but I think I could benefit from having a service dog as I soon will be living alone. I have hEDS & POTS. Service dogs are about $20,000 training can be 7k or greater. I have experience before my health declined with agility training my shelter dog. I am not opposed to some professional training at all, but I was just curious about anyone else’s experience or advice on this topic. Thanks
My (F23) boyfriend (M26) and I have been living together for about a year and a half (together 2.5). When we started dating I had a lot of stamina, and I was a very active partner. We had no fights the full first year we were together, but about a month after we moved in together I started having extreme headaches and body pains. I was suddenly in bed by 8 every night, unable to move after work. It started with me thinking I was sleeping wrong. I would spend a lot of nights crying alone in bed while he played video games then he would come in an hour or two after I’d already been in bed and want to have sex. When I would say no he would get upset. He thought I wasn’t attracted to him anymore and he would start these conversations while I’m trying to sleep and I would end up having to take CBD to calm down because my heart rate would get too high to sleep. My neck and jaw hurt really bad pretty much all the time, and when the summer came around I was fainting a lot and I lost ten pounds as I was hardly eating (I was already 18.5 bmi). I ended up getting a kidney infection and I almost died. He can be a very supportive partner, and he tries but he always gets burnt out and tells me how miserable he is. I work 47.5 hours a week and it’s all I can handle but I don’t want to be useless, and by it’s all I can handle I mean I pretty much have no life outside of work. I used to do 8 mile hikes and run a mile in under 7 minutes. I couldn’t put my socks on by myself yesterday. I didn’t smoke weed for two years and I’ve started again because I don’t want to take Tylenol all the time. Our relationship struggled a lot for the first year we were living together. He thought I was being lazy and he didn’t understand what was wrong and 90% of household stuff was falling to him because I couldn’t manage anything with extreme exhaustion and pain. I thought maybe it was ADHD related. He was always trying to have these conversations that became quite repetitive. We thought I had POTS and I do but that’s not all. I have hEDS (diagnosed two weeks ago), probably MCAS, and POTS. I also have PTSD and I am currently in EMDR. Last night after EMDR I came home to watch tv with my boyfriend and eat dinner before I have to go watch my mom’s dogs while she’s out of town. (Which I can’t really handle in my state but my family doesn’t understand) Yesterday, I dislocated so many joints and I am in a flare. I called him when I got to my mom’s house and into bed. I asked how he is and he said he’s totally miserable because he wanted to have sex and I’m in pain. Honestly, I understand it because I kinda feel like I’m living in some version of the substance but reversed where an old lady took over my body. He had a good partner who was contributing and now he doesn’t have that. He also doesn’t have any friends in our town as he works from home so I know it’s hard. I try to push myself to be helpful, but it’s too much for me and I can feel myself getting worse. I don’t know what to do. He is an amazing loving partner who has always done so much for me. He comes to my appointments with me and sticks up for me, but he’s not handling this well and it’s making me feel like shit. I don’t feel like myself, and I don’t really want to live like this. I don’t know if I want advice or what but I don’t really have anyone to talk to about this. I’m super isolated.