As some of you may know I'm a 60-something male who "passes" -- still ambulatory enough to go to the gym daily, climb stairs, ride a bike, et al.
Lately (in the past 6 months or so) I've noticed an increasing amount of edema in my lower legs, from a few inches below my knees to my ankles. The right leg is maybe twice as bad as the left. My doc looked at it and sent me for ultrasound for blood clots, but nothing was found.
The edema isn't bad -- this is the area most strongly effected by polio, so you wouldn't notice it save for the bulge that occurs just above my socks. I do note, though, that when I scrape my shin (which seems to happen with fair regularity) it's very slow to heal.
I'm just wondering how "normal" this is, for a PPSer who's reasonably active.
I'm a fifty something who also 'passes', although the edema I suffer seems to be pretty mild, I only notice due to mark of socks too, I don't 'do' the gym but find it worse after walking more, sitting for a time e.g. Cinema/Theatre/dinner. I haven't mentioned it to G.P. but have always put it down to being 'par for the course.
Sorry if it doesn't help you much but I'm guessing we all have it to some degree or another.
I've had this for over 10 years now, worse in the summer. I've been tested for everything with no result, just one of those things!
I had this same problem on only one leg. It turns out to be related to several things and not necessarily PPS. A knee joint that has deteriorated cartilage will cause the body to produce more fluid, which will leak out of the bursar right behind the knee joint. It feels kind of like a puffy sack. Get an xray by a orthopedic surgeon to rule this out. Gluten intolerance can cause inflammation in the legs and especially my PPS. Several high blood pressure meds can also cause this problem. I am gluten free and I take omega 3 to lower inflammation and I do need a knee replacement. I will get a stryker knee replacement, which is covered by medicare. a stryker knee is less invasive to the PPS patient. If you have caught this problem soon enough other less invasive treatments are available. I was a runner and I have very little pain in the problem knee. Pain is not necessarily an indicator of joint problems. Support stockings that go above the knee to mid thigh; wear when active, really help the swelling. RiteAid carries these stockings.
Actually, the left leg is the one with the bad knee. I do have a very mild problem in my right hip, but that's about two feet from the edema.
No signs of gluten intolerance.
I do take Intuniv, which, though it's an ADHD med (and also treats my fatigue), lowers my BP. As I understand it, lower BP can contribute to edema, but wouldn't be the primary cause.
EDEMA in your legs: How is your breathing? I can only give you my experience. 3 years ago my body went downhill fast. I could hardly lift my arms or legs and was in bed for extended periods of time. I also had developed edema -- first the right leg (knee and below) - then the left leg same place. Doctors and nurses all commented on what an interesting place to have edema. They said that I was down too much and not using them enough. Things only got worse and I finally got a second sleep test. The first sleep test was positive and they put me on a CPap, which suffocated me and I told them that. They said everyone feels that way. So I just did not use it. After the second sleep test the same results, so I began chatting with a person in this group and she directed me to Helen Kent in San Diego. Helen read my sleep test and said my TCO2 was 99 and that if I did not get on the right machine my heart would just stop. That was the reason for the edema.
Bottom line was my respiratory muscles were/are not expelling the carbon dioxide from my lungs and that was putting an extraordinary amount of pressure on my heart and the organs were not getting the Oxygen they needed. She advised me which machine I needed to expel the CO2 to maintain O2 levels - a Resmed Vpap. I am on it every night and the afternoons. My edema is very slight now. In addition to the edema I was hyperventilating - ran out of breath as soon as I started any activity.
So that could be a reason for your edema. You should consider getting a sleep test regardless of the reason for your edema. All PPS folks need one. And when you get one you need to request that they monitor your TCO2. You can listen to the videos on this site regarding breathing. They pertain to people with neuromuscular diseases and are a wealth of information. I find we just have to continually educate ourselves...doctors need all the information we can give them to find a solution to whatever problem/s we have.
Let us know when you find the answer!
My breathing is pretty good. I can still ride an exercise bike for 30 minutes at a stretch. Re sleeping, my big problem is vasomotor rhinitis, which basically means that my nose is clogged many nights.