This is just to complain really and apologies for that. But I cannot stand the pulsating and little bug crawling around thst pulse feeling in my heels right before the big explosion of blood pooling in my feet and then during the whoke flare and even when just the heel flares.
I’m sick of it. I tied a piece of cloth around my heel to see of I put pressure will it close the little devils up? Nope it helped the feeling but then the blood pools into your heels swelling it. Lesson learned.
Next up? I’ll let you know. But I’m going to try every odd thing there is to see if I can find a way to stop it.
I almost want to say sew those vessels closed with just a little space and I’ll take my chances with the cold and heat. Just keep them semi opened. The don’t function anymore and open and close properly like everyone else in the world. I feel something surgical could be done to our extremities.
Cooling packs are coming more and more ineffective. Nights are pretty severe both feet and swapping one for the other.
Regardless this stupid lame disease is not going to get to the best of me. It took my career, my outside world, little things I could do with hands. No more sneakers or socks or pants, no more food…
But it won’t get my soul or spirit.
I empathize with you. You have said almost exactly what I feel in my feet. Also, my hands, face, chest, & arms. But the bug crawling, etc, is in my feet. They are out of control. I also wish I didn’t have this terrible disease that has also taken, my career, my shoes, my socks, & much more. I am thankful for the good days although there aren’t many. And, I too, will not let it take my spirit. My spirit has hope. Just know you are not alone & someone like me is thinking about you & understanding you. I hope you have some better days.
It’s a relief to know that others experience this as there is no one to ask with no treating Doctor.
Thank you for your kind words. I hope you find relief.
May I ask why you cannot wear pants?
I have burning thighs that makes this a freaking show!!
Do you have SFN?
I have em and I’m not at the stage to know anything further. I don’t have the gene. But lately if I wear the lightest pants such as yoga pants my knees get hot and red and my feet will be flared too. It never happened in my knees but now it has. So I went out and bought some dresses and skirts and not fancy so I can wear just out and about. At home shirts now only. The less clothes the cooler the body. If u keep the temp at 62 and wear shorts I’m cold but it helps the flare stay down. I am sorry you have burning on your hips. I don’t have that in my hips but at night my hips throb with pain. Gone during the day.
I am another person with the bug crawling under the skin feeling
It’s pretty creepy
The only thing I can link it to, is a vitamin deficiency , haha just can’t figure out exactly what vitamin is depleted
I’m narrowing it down though lol