I am saying that it seems highly plausible for me and since it has taken me over 25 years to realise that EDS could cause my illness (and it is the only thing that has given any logical explanation for the bulk of my symptoms) I am putting out a call here to see if it applies to anyone else as well, and asking people to observe what really causes their crashes...could it be from just being upright???
I completely agree that people with an ME or CFS diagnosis should look into whether standing (or sitting upright, hot showers, and so on) causes a crash. Since you have symptoms that come on after standing then I'm actually quite surprised (and saddened
) that for 25 years none of your doctors considered some kind of Orthostatic Intolerance (OI) as a possibility. It's terrible that doctors know so little about OI.
Many patients reading this forum already know about problems with being upright. Quite a few have a diagnosis of either NMH or POTS. They are already treating these problems with drugs, avoiding NMH/POTS triggers, and so on. There's even a forum section called "
Problems Standing: Orthostatic Intolerance."
It's pretty well known that many ME/CFS patients have OI. The first research study on this connection was published back in 1995.
[Whether OI is co-morbid with ME, or an integral part of the illness, is a more complicated discussion. But there's no question that OI is there in many patients. This has been known for years.]
What I'm trying to figure out is where EDS fits in to the picture.
If a patient already knows about problems with standing, and already has a diagnosis of OI (whether it's NMH or POTS or both), then what information is added if they get an EDS diagnosis?
I'm not saying that an EDS diagnosis is useless information! Please don't think that. I'm just trying to figure out what the patient should do with the new information.
Let's take my own situation. I have had a diagnosis of NMH since 1995. I'm already treating my OI with a combination of prescription drugs (fludrocortisone, midodrine, potassium), extra salt and water, and lifestyle changes (avoiding standing and heat, sitting down in the shower, resting with my feet up after meals to avoid splanchnic pooling, etc.).
Now, let's say that I get a new diagnosis of EDS on top of the ME and OI. How would this new diagnosis of EDS change my treatment protocol for my problems with OI? I'm already taking a vasoconstrictor (midodrine) to help keep my blood pressure from dropping. Are there other ways to treat the "stretchy veins" in addition to vasoconstrictors?
In theory, I understand how treatment for OI might change if it were discovered that the cause of OI was an infection or mitochondria dysfunction. What I don't understand is how the treatment protocol for OI would change if the patient learned that it was caused EDS. Are there prescription drugs, for example, that are meant for EDS patients?
I'm probably missing something obvious because I know so very little about EDS.
And what I know about OI is probably not all that much, either.
Thanks!