u/Remarkable_Dare5161

Got officially diagnosed with “chronic post covid syndrome” and ME/CFS today. I have been told that it’s probable for 3 years so I am not at all surprised. It’s nice to finally have it in my chart!

I don’t know how much it will help, as I have been declined from my closest long covid clinic due to me seeing a neurologist who supposedly is supposed to treat it. They have never claimed to be able to treat this condition, but I did send them a message to see if they will take it on. My GP also told me to start at home GET which I believe has been largely proven to be harmful, so I don’t think she will be very helpful either :/

But it is in my chart and that is a win!!

Pretty much exactly what the title says. My fiancé (m24) has vEDS and has recently become quite scared of the future. What do I do to support him without minimizing his fears. I don’t want to add undue stress about symptoms and life expectancy, but I do want to be able to offer support and reminders on how to do things safer. Also, how do I personally prepare for any emergency situations? I know they are likely to happen and I want to do it in a way the makes it quick/clear for the medical providers while comfortable for my fiance.

He has not had any emergent medical events, but does have many complications due to vEDS including a spinal fusions, heart defects, eye problems, and vascular issues with his organs.

I have researched these topics, so I know the basic symptoms and signs to look out for. I am looking for what maybe works for you that wouldn’t be online or what is specifically reassuring during fearful times, but I will take any suggestions or personal stories :)

For reference I am a 22f who’s NES started in January of this year. It’s been severe enough to stop me from working. I am on a waitlist to see an Fnd specialist. I’ve have weakness in the past, but this past week >!my fiancé’s grandma died!< which required about 20 hours of travel over 4 days with a >!funeral and reception!<. During that time I had a bad flare and my weakness kept getting worse.

Now >!I getting weakness daily in my right leg and as of a few days ago, both after seizures. Last night I had a seizure and my legs stopped working. I am still unable to move them. I called my current neurologist and am awaiting a callback, but the MA said that I likely need to go to the ER!<

>!I am so scared of going to the ER just to be dismissed. Or if my legs all of a sudden start working while I’m there, I’ll feel like such a fake.!<

My current symptoms are >!paralysis of my legs with spasms and shooting pain, dizziness, and nausea when I try to eat. I haven’t had a seizure yet today.!<

Does anyone have similar experiences and how did it go with the ER? How long did the paralysis last and how did you fix it?