But EDS seems to match a lot of the things some of the ME doctors have been mentioning about our vascular systems and POTs (blood flow, etc.) and not being able to get the oxygen into the cells.
Anyway we could talk about some of the things you mentioned but they seem to be taking the thread off topic and I don't want to do that.
Why don't you consider starting a new thread with what you are finding in your research?
I agree, it sounds interesting, and it looks like you're dealing with a lot!
But I am very interested in the relationship between hEDS, EDS and ME/CFS... I have been diagnosed with ME/CFS 5 years ago. I was told by a neurologist about a year ago that my joints seem to be more hypermobile than usual, but it was only by accident that I ended up in clinic of a naturapath who specializes in EDS that I was given an hEDS diagnosis. I very easily could have gone many more years, maybe for the rest of my life, not knowing that my hypermobility is perhaps the true source of the ME/CFS, POTS, and MCAS...
And since I'm not hypermobile in my hands, it really evaded other doctors' considerations for EDS, as that's where they usually look.
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That being said, I am in the process of trying the Vitamin C IM injections. So far it's been a little rocky and I've encountered a few problems.
What I do recommend before trying them, since they are a giant pain in the @r$3 however, is to try the sustained release 1000mg Vitamin C. I like the NOW brand of this... I tried these first and I felt a difference in my energy, but then had to stop using them because it really hurt my stomach after just a couple of days. My stomach is just too fragile for regular high mg vitamin C.
As for the IM Injections, here is an update. Keep in mind I'm doing all of this under the guidance of my naturapath.
1. I started out injecting straight Ascorbic Acid in .5ml dose. I was injecting into my vastus lateralis (thigh) and ventrogluteal (hip) sites, and trading from left to right every day... so every 4 days I'd come back around to the first site. My first two thigh injections went fine. There was some pain but not terrible, although I think I have a high pain tolerance. I do also work out the muscle first every time.
However, after that I kept experiencing problems with the thigh injections. I first think I hit a nerve on the left side. The injection was pretty painful, but since they are known for being painful I went with it anyway. But afterwards I had some strange nerve sensations for many days which was a little freaky. This was a little bit lateral and in the middle third of the thigh where I've seen people say it was safe to do IM injections for other things.
So then I tried to inject into my rectus femoris muscle, which was incredibly painful. So decided not to do that again.
Next time around I tried my right thigh, but a landed it a little lower (inferior) to that middle third region of the thigh they recommend, and again hit a nerve. It was very painful afterward, and I felt and still feel nerve sensations and it's been about a week and half. I do know it's healing, but I did a little damage to it. Damn.
2. If you work out before - I'm just doing a few hEDS recommended PT exercises, mainly hip raises, plus then a few extra hip exercises just before injecting, it doesn't take a whole lot - there is hardly any pain for me as I inject. The pain comes after that, and isn't that bad, as it feels like the C spreads into the surrounding muscles/area.
3. I had something weird happen that changed everything:
Last week after I injected into my left hip the C felt like it spread into my hip joint - like literally into the joint itself, and anytime I stood on that leg in just the right spot my leg would give out and collapse a little. It felt like the C got into some tendons or something deep in there and did a little damage? I am not a medical person in anyway, that's just what it felt like so I have no idea what really happened.
Then after that the hip joint was inflammed and hurt a bit for a few days. So I stopped the injections altogether for a few days.
4. So now I'm doing them much differently:
I bought bacteriostatic water and am mixing half and half with that. I also took the C back down to .3ml, so it's .3ml C + .3ml bacteriostatic water = .6ml shot.
I'm also a very small person and the needles are 1.5" long... so I'm not injecting as deeply, trying to only pluge the needle in 1 -1.25".
And I'm only doing them every other day at the moment to give things lots of time to heal, especially since I'm no longer using my thighs as sites and have to trade off between only two sites.
5. I discovered that I have a terrible fear of needles.
I didn't really know this about myself. I've never been able to watch when I get blood drawn, but never thought much about it. So I had to overcome this fear in order to do this. I still shake a little when giving myself a shot and I still do things to calm myself down, but it's getting easier..
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I thought I'd post a detailed description of what I'm experiencing, simply because there is so little information out there about it, and even though I have help from a medical professional, it's such a rare thing to be doing that even they don't know a great deal about it. This is kind of a new field... we need to share information and stories.
Please if you try it, let us all know what your experience has been like.
