DYSAUTONOMIA PICS & STRIPE ON THUMB NAIL

[MJ]

Here are some pics of what I call ‘Crazy Veins: EDS & Dysautonomia’. The close up is of a vein on top of my left foot. These veins are full of blood and SO FIRM. I am SOB (short of breath) with severe POTS (and many other symptoms) when I get crazy veins. Does anyone else get crazy veins like this? Also, does anyone know what the red stripe on my left thumb nail means?

All feedback/comments are welcome.

Attached files

[abbilou]

I believe the crazy veins and reason for aggravated sympotoms during crazy vein time is a result of blood pooling. Do you wear constriction stockings? They are made for feet, legs, abdomen and even arms.

I have nails like yours. They have the red stripes as well as I have ridges down the length of my nails. I have never known why.

[Barbara]

I’ve had a thought about compression stockings, which I agree with you Abbilou, we really do need them, for sure. I wear mine 24/7.

In MJ’s case I would seek the doctors advice first because, in a normal leg, the veins aren’t prominent and therefore the compression from the support stocking is applied to the whole leg structure and the veins receive their support indirectly (i.e. from the pressure of the surrounding tissue). In MJ’s case, the vein is prominent and therefore would receive more direct compression, where it is prominent, I’m not sure that this is a good thing.
Regards
Barbara

[abbilou]

I should have said ask the doctor about them first.

I have considered keeping my Daugther in her stockings 24/7 but am not sure it’s really ok. If it were me I could gauge it based on how everything feels but with her I’m left guessing. Do you keep them on while sleeping, Barbara? She only wears knee Highs because she is not able to pull them up and down by herself. Hopefully she will be able to upgrade to full ones someday. I’m considering just getting an ab one to wear along with the knee highs.

[Barbara]

Hi Abbilou,
Yes I wear my hold-up support stockings 24/7, I would get your daughter into them as soon as you think she’s ready (and strong enough, I have to use a ‘frame’ to put them on!).

I don’t hold much credence with the knee-highs, as there’s a lot of leg going unsupported. I don’t know whether I’d want to risk them overnight, when the knee can get into angled positions and kids are very restless aren’t they, the knee-highs might roll down and gather and cause sores or restrictions. If I were to wear knee-highs 24/7, I’d probably develop sores near the tops. I don’t know though, as I haven’t tried them, it’s just my guess. Anyone else on here got experience of overnight knee-high support hose?

I don’t wear an abdominal binder at the moment, though I have asked my doctor for one recently. I just remember my bowels packing in for 5 days after I had my 3rd child and an abdominal binder brought great relief to the pain I was suffering and I think, had a beneficial effect on getting them going again (though it was 28 years ago!) It was like a large strong piece of very broad, soft-lined elastic, with some kind of fastener.
Regards
Barbara
(UK)

NOTE (added Oct 2013): I have now tried the abdominal binder and, this time, it worsened the bowel motility, so I cannot really endorse that as an effective treatment now!

[MJ]

I believe the crazy veins and reason for aggravated sympotoms during crazy vein time is a result of blood pooling. Do you wear constriction stockings? They are made for feet, legs, abdomen and even arms.

I have nails like yours. They have the red stripes as well as I have ridges down the length of my nails. I have never known why.

Hi Abbilou. Thanks for your input. I’m glad to hear someone else with EDS has the red stripes. It must mean something. The pic isn’t very clear, but I have red stripes all over my thumb nails – that one in particular stands right out though. And yes, my heart has to work so hard with all that blood pooled in my limbs.

MJ

[MJ]

I’ve had a thought about compression stockings, which I agree with you Abbilou, we really do need them, for sure. I wear mine 24/7.

In MJ’s case I would seek the doctors advice first because, in a normal leg, the veins aren’t prominent and therefore the compression from the support stocking is applied to the whole leg structure and the veins receive their support indirectly (i.e. from the pressure of the surrounding tissue). In MJ’s case, the vein is prominent and therefore would receive more direct compression, where it is prominent, I’m not sure that this is a good thing.
Regards
Barbara

Hi Barbara. I’ll check it out. Dr. Diana’s impression from pics (those neck vein pics as well) is vasculitis and CCSVI; she has both. The veins on my hands can also constrict, but some are ‘broken’ like the one on my foot. Does anyone else get red, hot extremeties, like in these pics? I feel horrible when this happens. My heart pounds so hard and my toes are REALLY sore. I believe this is the opposite of Raynaud’s (I have Raynaud’s too).

Attached files

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