Sorry if this is not exactly EM related, but as someone with EM, perhaps others have similar discomforts that pop up?
I've just been diagnosed with (Vascular) TOS. Was one of those people born with cervical ribs.
Shoulders ache a bit. Hands dilate/full of blood, down when by sides.
Doc confident it will help. Might stop Palmar Erythrema.
Weighing up the options of having surgery. Lifting hands above head blocks arteries...
Some complain of shoulder instability after the Op.
Perhaps I should fix my posture?
- Anyone has it, if they eventually got EM issues in their hands - potentially as a result.
- If they had surgery and it helped?
Thanks in advance
i'm sorry Ocker. I have never even heard of that. interesting that it causes your EM symptoms in your hands. I definitely get the bulging blood vessels and pain when hands are down and it is remotely warm. I have to keep them up. I call them my surgeon hands because it looks like i just washed up before surgery holding my hands up. It really looks funny if I am in public!
I hope someone here can give you more insight into the surgery and if you have it I really hope it fixes everything.
Did they say what the cause was on the redness when you hands are down?
I’m sorry to say I have no real answers other that it is just EM. They say it’s natural to have more blood flow in your hands when they are below your heart but with EM ours is excessive causing the bulging blood vessels. Strange some with EM don’t have the bulging vessels. I’m glad for them because some of my worst pain is caused when they bulge. When it happens do your hands feel as if they are going to explode with pressure and have electric like burning needles all over? I can get this in my feet and knees too. It is the worst pain ever and elevating the limb stops it. It will still be red and burn but not the electric needle pressure.
As far as redness and warmth goes I don’t know. I guess when the small capillaries have the same reaction as the larger vessels it turns red because there are so many capillaries and they are so small you don’t see them like you do the larger vessels but all of them combined flaring with excess blood just cause your whole hand or flaring part of hand to turn red. I’m also thinking blood is warm so more of it might make excess warmth too. Just like the swelling… more blood = more fluid in the hands and voila
You have swelling.
Why it all happens I have no idea and that last paragraph is just my assumptions on how it happens.
I hope you get some real answers soon.
Thanks very much for your post.
No you have not rained down on my parade at all - I am pretty adverse to surgery unless its getting really, really unbearable.
You approach is very realistic and common sense.
I indeed have terrible posture, sitting at a laptop all day.
So I'm going to look at the ways in which I can try and change that first.
My hands just seem to fill up with blood when they are down and go super red but I don't feel EM pain in them. I'm lucky at the moment that the EM side of things is in my feet only.
Thank you so much for posting this! I am wondering if you ever went through with the TOS surgery and if it helped with all the blood pooling in the hands.
I have been experiencing bulging/dilated veins in my hands (which I find extremely painful) for the past 18 months. Docs have suggested EM, although it's not a perfect fit b/c I really don't get "redness." And, I was also diagnosed with neurogenic TOS on left side only, which has been ongoing prior to any of the hand symptoms. Some docs say...there must also be venous compression higher up (subclavian vein in thoracic outlet) that's causing the venous congestion in hands....but it's really not coming through on imaging or ultrasounds. I don't know what to do. As you are aware, rib removal surgery is a big deal.
I'm wondering how you are doing and if you might be willing to share some more of your experience. I would be so grateful! Hope to hear back from you.
Thus far I have not had surgery or any other treatment.
Hands still go very red when at my sides.
Feet are the worst, standing still becomes quite uncomfortable.
Can bend over and my head will fill up with blood and feel very unpleasant.
Its like gravity controls everything.
I hear of people complain of similar with POTS? but I don't have rapid heartbeat etc. Seems to be dysautonomia of some description? Dilation of blood vessels, have small amounts of flushing in the face and ears every so often as well.
Have you been tested for anything else? Auto-Immune, etc?
I have been through a barrage of tests and has come up with nothing thus far.
Tried a blood thinner such as aspirin?
I found with aspirin my hands were more 'splotchy' - less red with small white areas when the blood was a bit thinner...
Have a side worst than the other or both hands the same?
Before saying you don't have rapid heartbeat, have you tested it? Sometimes, you can't notice it just like that, or you don't want to notice it, like me, because your doctor wants to diagnose you with an anxiety disorder :).
That said, blood pooling can also cause orthostatic hyper/hypotension.
Also, Mast Cells can release mediators that make your blood vessels dilate and/or they can degranulate (explode like pa pinata) and kill the small nerves that take care of that. This is to say, that your immune system can be a cause among others. It may be unlikely if you don't feel any pain, itch, or tingling, or constant irritation.
Ocker - thanks a ton for the reply!
Having terribly bulging and engorged veins in both hands. It's horribly painful and also very sensitive to any heat exposure. My problem is only both hands as well as left-side neck/shoulder which they are saying is neurogenic TOS (nTOS).
That's all, no other symptoms. Don't think I could manage anymore!!
Here's a pic...