Excessive Vein Dilation?

pattismith

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I developed that exact hand appearance after getting ME/CFS. It varies from day to day though. I suspect it might be due to some blood vessel dilation malfunction.
It may be the microvascular arteriovenous shunts that dilate (like in erythromelalgia, which goes with both hyperhemia and tissue hypoxia).
Did you notice if your red hands/feet symptoms are more proeminent in summer than in winter?
Did you notice the hand redness increases when you bent over with your hands down to the floor and then your hands turn pale when you stand and raise them to the sky?
 

lenora

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I do sometimes have burning pain in my right leg, mainly the foot and calf. It varies in intensity but generally feels as if that part of my leg has been injected with acid.

Hi Pat.....Yes, that's the feeling, like acid has been injected. You can actually feel the heat radiating from it. I have the pain across my shoulders and neck, down my l. arm, under that area and it wraps around to the front of my body, the ribs are also caught up in it and frequently come out of place. 30++ years of it, brought about my sneezing with my arm in the air as I brushed my hair. I used to be on a patch that controlled it, but of course that was stopped by the government b/c others were overdosing on it. This has happened a few times before in the ever-changing times of trying to control the pain so many of us suffer. If you don't have pain, be grateful...oh, please be grateful. Some suffer much worse than I do, and I'm almost at a loss for words when I hear their stories. In my case it has now moved to the r. side, also. I don't expect my physicians to "heal" me, they suffer with their patients and do the best they can. Something new that may work, a special cream from a compound pharmacy; they try and I'm grateful.

The temperature changes are no fun, either. I tend to run hot one minute and freezing the next and can't tolerate being near air-conditioning vents (even though I need a/c). We never run it at night, but cool the room down as neither of us likes to be near a vent. It's worse already this year, though....I can't even bear to think of the summer ahead.

Well, that's all too much and interfered with the saying itself. But we have to look for practical ways to deal with this illness, set some goals for ourselves and do our best to return to our families and other loved ones. If not, we're lost forever. Be strong....please. Yours, Lenora.
 

Hip

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Did you notice if your red hands/feet symptoms are more proeminent in summer than in winter?
Did you notice the hand redness increases when you bent over with your hands down to the floor and then your hands turn pale when you stand and raise them to the sky?
I have not noticed any trends like this. Does not seem to be more prominent in summer, nor when I bend down with hands to the floor.
 

pattismith

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I have not noticed any trends like this. Does not seem to be more prominent in summer, nor when I bend down with hands to the floor.
In this informative article, we can see that EM skin signs are "Erythematous or mottled skin", so I think the pathophysiology of our mottled skin in palms and soles has something in common with EM pathophysiology.

In the primary genetic form described (gain of function of sodium channel Nav1.7 linked to the SCN9A gene), "Feet soles and hand palms could be affected primarily. Its progression could attain a greater compromise of both upper and lower limbs"...
 
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In the primary genetic form described (gain of function of sodium channel Nav1.7 linked to the SCN9A gene),
Interesting they list a sodium channel gene. SCN9A is listed on Annie Oaklanders site as related to neuropathy along with SCN10A and SCN11A if I remember right. So maybe like the title says perhaps it is linked to neuropathy?

@pattismith I'm not sure where you got gain of function from?
 

pattismith

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@Jwarrior77
the skin redness you experience may have something in common with erythromelalgia as well. Pressure is a known trigger.
"Common triggers for daytime episodes are exertion, heating of the affected extremities, and alcohol or caffeine consumption, and any pressure applied to the limbs. In some patients sugar and even melon consumption have also been known to provoke attacks"

Interesting they list a sodium channel gene. SCN9A is listed on Annie Oaklanders site as related to neuropathy along with SCN10A and SCN11A if I remember right. So maybe like the title says perhaps it is linked to neuropathy?

@pattismith I'm not sure where you got gain of function from?
you can find it in many articles, even in wikipedia. "By 2013, nearly a dozen gain-of-function mutations of NaV1.7 had been linked to IEM.[7]";
Note that mutation in SCN10a has been found as well in EM.
 

PatJ

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@PatJ
do you know why you had transverse myelitis?
At first it was suspected to be MS so for 17 years I that's what I thought I had. When I started getting all the odd, progressive symptoms of ME/CFS in 2003 and 2004 I first assumed it was MS related. But then in 2007/08 I went to an MS clinic where I had various tests including a full spine and head MRI. They eventually determined that I don't have MS.

The specialist who I spoke to even checked with the lab tech who analyzed my spinal fluid in 1991. My results were so odd that the lab tech remembered the results even after 17 years. I had 6 oligochlonal bands which was, for a reason I don't understand, very odd. It was after all this investigation that I was told they thought I had an episode of transverse myelitis in 1991 that was probably caused by a viral infection.

Edited to add: They didn't know what the infection was. They said the infection was in my spinal cord and that my immune system attacked part of my spine to get rid of the infection, but also caused spinal cord damage.
 

Jwarrior77

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Whitney Dafoe just recently put out a new Facebook post talking about some weight loss he had recently. He posted a picture with it and I was surprised to see that he has the same dilated veins! I really wonder what process is going on that does this. If you can't access facebook I could post a picture here if you want.
 

keenly

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Does anyone else have veins that seem to excessively dilate for no reason? I have POTS / Dysautonomia so I know it's related to this. They get dilated when exposed to heat, eating different foods, and even emotional upset or stress. I believe it could be related to MCAS however not entirely sure. I know lots of people have issues with their BP, vasodilation, and vasoconstriction but it seems way too excessive for me. I can literally see almost every vein in my arms and fingers.

Pictures don't do it justice. Its also happens in other parts of my body such as ankles and feet. It can get worse when upright as gravity pulls the blood down causing it to pool however it happens most of the time laying down. Also I know some people are naturally vascular but I never was. I know it's related to my illness because it only sprung up out of no where when I got sick. The pooling goes away once I lift my arm up and my veins become normal again. My veins have also become way more stretchier/weak to accommodate all the excess blood. I'll attach some pics to show what I'm talking about. I'm just trying to figure what is causing it and if there are any solutions to help make it better.
View attachment 37249 View attachment 37250 View attachment 37251
I have this in my legs.