Hey everyone
I'm new to this part of the forum, though I've been on the peripheral neuropathy forum for awhile. I was diagnosed with PN back in May. I've been bedridden ever since--not because of the pain (though it is intense), but because of a weird symptom.
I have what my neurologist keeps calling pooling. The blood is pooling down in my legs and feet and won't pump back up, causing my feet and legs to turn so dark purple that they look almost black. I looked at the thread of pictures, and I only saw a few pictures that were darker than what my skin looks like--all of the pictures looked mild compared to my skin when I stand up. So at this point I am absolutely bedridden. I only get up to go to the bathroom, which is only 10 feet from my bedroom. Even that is a huge ordeal, and causes extreme pain. The pooling causes so much pain and pressure, that I can't stand to sit or stand long. I had a doctor appointment this morning, and sitting in the wheelchair for an hour and a half just kills me!!!!
My neurologist has exhausted all the options as far as medicine for neuropathy, and has pretty much given up. He doesn't know what else to do. Since I don't travel well, and he is already an hour away, I don't have many other options as far as getting other opinions.
I have been researching RSD for about a month since I had two people ask me in one day (one on here and a friend on Facebook) if I had ever been diagnosed with it. I talked to my family doctor about it. He said that he didn't know enough about it and couldn't diagnose it, but that it sounded like a possibility.
So now, looking at those pictures and some of the posts, I am curious if I may have RSD in addition to the neuropathy. Nothing is working for me--the medicines for neuropathy... the pain medicines--nothing.
I have all of the symptoms listed on many websites for RSD, except excessive sweating. That is listed on some sites and not others, and I don't sweat a lot unless I am outside in the heat.
I am just curious if anyone out there also has this pooling, or if the discoloration is there all the time. I did read in that post that one or two people talked about the pooling, so I know I'm not the only one. I am waiting to hear back from my doctor on this.
I'm also curious about how RSD is diagnosed--can anyone give me some information on how you were diagnosed? The websites I have found seem to have conflicting information. Some say there are specific tests, while others say that it is basically a doctor's discretion.
Thanks for reading.
Sarah