Please please. I had to go to hospital for.a severe situation. A combo of cfsme and pots making me pretty much unable to move without consequences. They gave me saline drip and everything went away. Now 2 days later they've decided it's a past thing.. seem to have forgotten the main reason I came, and will take the saline away. I'm scared I will revert back to how I was when I came in. Or worse due to more acifvity between then and now. Anyone know? They don't believe it'll happen. They think I'm mad. But they don't know me/Cfs blood volume issues..
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Help about experience pls
- Thread starter Kv_Tofu
- Start date
xebex
Senior Member
- Messages
- 840
you'll need to find a doctor who will prescribe saline to you as a regular thing - there are some who will and there are some people with POTs who greatly benefit you can't keep going to ER for it , they simply don't understand and will label you as mad etc, i know its awful but you've found something that helps, now to find a doc who will listen! I'm sure some POTsy people will be able to help or even a dsyautonomia forum might be able to. In the mean time can you up your salt and fluid intake?
Judee
Psalm 46:1-3
- Messages
- 4,500
- Location
- Great Lakes
Here's the page on the dysautonomia international site to find a doctor. It lists doctors around the world so hopefully you can find one to help.
Even if there is no one right in your area you could possibly contact the closest one to see if they can recommend someone in your area.
http://www.dysautonomiainternational.org/page.php?ID=14
Even if there is no one right in your area you could possibly contact the closest one to see if they can recommend someone in your area.
http://www.dysautonomiainternational.org/page.php?ID=14
Sorry not looking for one. I just need to know how I will come out the other side? The same as I went in?
Sorry not looking for one. They gave me it by routine not treatment. I need to know what is likely to happen after the two days? 100% the same as day I arrived? Worse? It would be life threatening I feel
xebex
Senior Member
- Messages
- 840
there's no way we can know - POTs is generally not considered to be life threatening albeit incredibly debilitating. - you will likely go back to how you were if you have POTs- from what i gather saline works for either a few hours to a couple of days and then back to pervious condition.