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

Hi,

Believe it or not, it can get a whole lot worse. If you looked at my pictures, then you can see for yourself. The left leg was amputated last year high above the knee after chronic infections and blood clots finally gave us no other choice. They had me scheduled for a duel above the knee amputation but I backed out the day before surgery and instead advised I'd only go with one radical pedicure at a time. We still need to amputate the right leg by the way and my doctor and me spoke about it just a few days ago.

The problem is sort of two pronged. The main veins and arteries leading down the leg become damaged and then the smaller veins and valves that return the blood back up and into the body are also eventually destroyed. While purple is proof that you're on the path, please don't hit the panic button yet, because you're nowhere as bad as it can get, hence you're not looking at amputation as the only option left that's going to hit you tomorrow. Though I did go from deep red to purple and then black within the first year after my accident, I did manage to go 12 years before we were finally forced into chopping off parts of me. I've been dressed in black for more years than I can count now.

Additional ways you can tell how far you're progressing is by evaluating how chronic of blood clot problems and infections you're battling. My blood clot battle started around 6 years or so ago and like the rest of the damage has progressively gotten worse, but it never really happened overnight. When you're swollen huge (I can leak without being swollen), it's nothing for clear fluid and blood to leak out the pours of the leg(s). It occurs all the time with me and this has been my normal for more years than I can count. Messes up your clothes and towels and anything you're sitting on, but that's to OxyClean, you can get the stains out.

Infections and the severity of them is the determining factor along with of course circulation. Of course it's scary, but like all things we actually get use to narcotic tissue and when I'm reading about Shackleton down in the Antarctica, I relate to what it's like when you're watching body parts shut down, but we do learn how to cope.

Things like when your leg has the texture of an orange and/or an onion is another part of having the circulation go sour. I go through more good quality lotions and assorted medical creams than I can even keep track of, but that's once again just the way this situation goes.

For two years I had water therapy where a therapist got in the pool with me and actually moved all the body parts from the waist down that I couldn't move on my own, and I'm positive that it did buy me some time before we finally had to proceed to body part removal. By the therapist moving my legs in positive buoyancy, we kept these now defunct valves working a little longer so I'd advise you look into this ASAP. If you're on Medicare already, then you'll learn that RSD is one of the few medical conditions where there are no limits on physical therapy. I went twice a week for 45 to 60 minute sessions for two years. Since I'm in a wheelchair full time, it felt good on the whole body as well.

Please keep me posted and let me know if there's anything I can do that might help. You're on a new path that's unknown and scary, but please keep in mind that RSD and the associated damage is only a part of who you are, not all you are. The more we keep ourselves focused on the rest of life that's still a pretty darn good ride, the better we do medically. This isn't something that we ever wanted out of life, but thanks to living in a country where we can still get remarkable medical care, we are luckier than most. Now we just have to work with what we still have, and screw a smile on our face even when we'd really like to just bounce off the walls. All that does is wear us out, but accomplishes nothing. Trust me, this is just one more hurdle, but not the end of life. Wishing you only the best, Bob.