Does anybody else have burning pain at the very top of the thighs and under the butt when sitting for a long time? I associate this with the onset of my EM (and peripheral neuropathy) about a year ago. A general web search turns up something called "high hamstring tendinopathy," but I think that's mainly an overuse syndrome, whereas mine began when I'd been sedentary for quite a while because of some fractures.
Yes indeed. Ever since the EM started. I rarely sit squarely on a chair because of it. On hospital visits I am always told to sit and wait and get odd looks and sometimes exasperation from the staff because I prefer to stand or hobble around on my crutches until they are ready. I never sit for longer than I have to and then right on the edge of my chair. If I sit back in a chair my back burns too and I get an itchy rash at all pressure points. It was a major problem when I was recovering from my fracture but now I am mobile it is just the same old nuisance it was before.
Oh yes - it (thighs and butt) gets rather hot after a very short time (10-15 minutes) of sitting. I use cooling pads to sit on whenever I can.
Yep… I hate when that happens… I sit most of the day, so when my butt starts burning I can usually get it to stop by walking around a bit… It never seems to last too long, thankfully.
I haven't had it on my butt but I get it every time I lean to one side in my recliner on my arms .
My skin will burn where my arm is making contact with the chair. If I cross my legs which I rarely do It will cause that spot of contact to start burning too. Even when I only crossed them for one minute!
I have the burning from sitting as well. I carry an icepack in a ziplock freezer bag inside a cloth zipper bag and stick it under my butt when I need to sit for a long time. It's not too cold because of the bag, cloth and clothing layers but does the job nicely. I have learned to live with taking my ice "purse" with me nearly everywhere I go.
I get it sometimes, but I have learned to sit with a coccyx cushion, which helps a lot. It relieves the pressure on the tailbone. When I am at an appointment I have to sit on the edge of the chair, it really aggravates the swelling in my ankles. I have something else I noticed has been happening and wonder if this is part of the EM, my skin turns red whenever I cover it up and I noticed on top of my knees it has been staying red all the time. Is this part of EM?
Thanks dkel9307, I am not that bad yet, but I do have to kick my feet out from under the covers at night and I only cover up with a sheet where I used to have a ton of blankets on me to stay warm. I used to cuddle with my husband to warm up, now he is the one who is cold and I get too warm.
I too have problems with sitting and have to perch on the end of chairs. I cannot sit back against the back rest as the pain in my tailbone is unbearable. I can also not sit for long on high bar chairs as my feet turn purple very quickly and become uncomfortable.
Thanks for the warning about bar chairs--I hadn't thought of that. Terrible not to be able to sit comfortably OR stand, but I'll also keep in mind the advice of many to perch on the edge of a chair.
Frances said:
I too have problems with sitting and have to perch on the end of chairs. I cannot sit back against the back rest as the pain in my tailbone is unbearable. I can also not sit for long on high bar chairs as my feet turn purple very quickly and become uncomfortable.
To everyone out there that is having problems sitting long, you should really try a coccyx cushion as they really do help relieve the pressure on your tailbone. You can purchase them at any medical supply store for around $35.
I experienced the pain on thighs and butt (and feet) for 20 years before my feet began turning red from EM and I was able to get a diagnosis. I experimented with a dozen kinds of cold packs before I found these (http://www.amazon.com/gp/product/B000E5CXY2/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1). They are tough, durable, and flat, and can take the weight of someone sitting on them for hours at a time, for many months before they finally show signs of wear. I sewed sleeves for them that will hold two at a time, side-by-side. This creates a nice, large sitting surface with some insulation between me and the cold packs. When I pull them fresh out of the freezer, I also double up a towel and lay it over them until they’ve warmed up a bit and I can be sure that they won’t hurt my skin. Best pain killer that I have found yet.
Yes, they do--and I don't think Chillows can take being sat upon for a long time (at least, mine started leaking). Thanks!
dkel9307 said:
These look like small chillows, Anne - fantastic!
And for my feet at night, having a small bedside refrigerator and keeping these large, very soft cold packs close at hand has proven tremendously helpful: http://www.amazon.com/gp/product/B001AB7IF8/ref=oh_details_o01_s00_i01?ie=UTF8&psc=1
Dear just a little stiff when they are brand-new, but after that they saw often up and you can actually wrap them around your feet.