thank you for posting. i learn so much for you guys that have posted on my questions. i think about giving up but then someone answer’s my question and i want to fight again. all of my kids (i have 4) have signs of dysautonomia. my left leg has had a blood clot, varicose veins, purple straits and now when i do to much can swell to twice the size of the other leg. both swell left leg is just worse. Barbara what are you doing to get better? mine has been with me my whole life, just seems to be getting worse not better.
Sorry, just found this post unanswered! I have found a couple of posts where I address some of your problems:
Here’s my way of dealing with leg pains:
The severe excrutiating pain I used to get when my leg went purple, was very difficult to deal with. The only solution was to sit down and if that didn’t work, to lay down and if that didn’t work, to CRY!! The solpadeine helped take the edge off but that’s all. I did find that if I had a daily bacon sandwich, it wasn’t as bad, maybe the salt from the bacon expanded my blood volume (made it less thick and claggy), or maybe it was the growth hormone that it’s pumped with, who knows!
I also have to watch the position of my legs, as raising them to the height of my bottom causes cramp, so I even have to sleep with them at least 6” lower than the level of my bottom.
If I’m sitting still for any length of time, I have to wiggle or judder my legs to keep the pain away, I get a sort of warning feeling, an ‘aura’ if you like, that the pain’s going to start if I don’t improve my leg circulation by juddering my leg. I used to use a massage mat, that covered a full recliner chair from top to bottom and if I sat on that and switched on the lower half, that helped alleviate this warning feeling and therefore avert the full pain attack.
I have my lower legs massaged twice a week and this helps a lot too. I think it get’s rid of the lactic-acid build-up (I could probably do with having this done every day!)
Coldness, worsens the pain, so I wear support hose, legwarmers, long trousers (all year round!) and always shoes or slippers (never bear-footed, especially on a cold floor, that’s asking for trouble!)
The 24/7 support hose helps lessen odema and helps circulation too.
Hope some of this helps.
Another post I came across which talks about other pains and some solutions was:
http://prettyill.com/forums/viewthread/167/#980
Regards
Barbara
(UK)