Lymphedema lower legs moving up?

[Zuree]

I am new to this service and very concerned at this moment. I have had lymphedema in both calves and ankles for no established reason for several years. I thought I was gaining weight rapidly over the last few days because my thighs looked larger; then tonight, my knees doubled in size and my thighs are swollen not fat. It looks to me that the lymphedema has spread to my knees and thighs practically overnight. Is this possible?

[Lynora]

It is unusual for lymphoedema to progress so quickly, but not impossible - however, you should be medically assessed urgently to illiminate an underlying infection or other reason for the swelling. Are you in the UK?

[Zuree in reply to Lynora]

USA. But I did use the Index and found 2 MDs near me. I had been getting help from a local hospital's lymphedema therapy treatment. So in the morning I will call and get an appt. Funny, now that I think about it, the lymphedema in my lower legs came on almost overnight, one leg at a time. But I could not find any doctor who specialized in lymph at the time.

[veriterc]

I live in UK, went to Europe for some treatment, but think you will find that things have imroved dramatically in this area. So as advised, seek professional help urgently. You might get some pointers for ideas from aftercancers.com/lymphoedema

[Zuree in reply to veriterc]

Actually, the list was of lymphedema physicians in my area but they are therapists, not MDs; since I have gone through the therapy program already, I will not be contacting the ones on the list. I did see my primary physician and he confirmed it is lymphedema in my thighs but not in my knees but the tissue around my knees. Still my knees themselves are huge, I guess being pushed out by the swollen tissue. Since I also have neuropathy from lumbar spinal stenosis I feel like I should get a robot to carry me around. I am 83 and a woman living alone in a home with three floors built for someone who would love stairs. I am determined to make this workable and I appreciate that there are others out there willing to help me. Thank you and also thanks to Lynora.

[Robbie67 in reply to Zuree]

Hi Zuree, you are the first person I have come into contact with that has Lumbar Spinal Stenosis & Lower Limb Lymphedema! Are you in constant pain? If so does it get worse in the heat? I live in Oceanside, Ca. In the summer the pain in back and in legs is just awful. I am going to be 70 in Feb. I have had back surgery. Made it worse. I have stairs too. Want move where it’s cool, & no stairs!

I am concerned that something else could be wrong since this extreme swelling occurred so quickly. I hope things get better for you soon. You sound like a real survivor. You are not alone I have been in excruciating pain for the last 11 1/2 years. Confined to home.

Sincerely

Robbie

[Zuree in reply to Robbie67]

I have not had a pen-pal since I was 13 years-old but I think I do now. I am 82 (83 in March) and so agree about heat, really about humidity. I stopped wearing my wraps because in the high heat and humidity it was like torture. So my lower legs being worse than they were is my fault, unless I want to blame the weather.

As to pain, from the age of 17, I lived with severe and frequent migraines. All pain is measured by that for me — “at least it’s not a migraine” !!! Misery is what I consider as the best description of how my back and my legs make me feel. Also I use attitude — I have a friend who has stage 4 ovarian cancer and I remind myself she would take my misery ten times over for a chance to spend more time with her family. So I make myself settle down a bit. Of course there are times I am close to tears until I remind myself that I have my mind (mostly), a safe place to live, food, and heat and friends and family and most importantly THINGS TO DO. I TOO AM HOMEBOUND but I have lots of books, a wonderful computer and an avid interest in almost everything so I am never bored or lonely.

As to the speed of the upper legs and knees, it really was not that fast — I kept thinking that my thighs were looking like the Pillsbury Doughboy. But how could I be gaining weight since I was eating less; it did not make sense. Around Thanksgiving I was in the hospital with 10 days of bleeding and clotting. They never figured out what it was although I had every test related to kidneys, etc. Since I also have a-fib, the concern was the Warfarin use but I am back on it with no problem. But perhaps whatever that was triggered this lymph reaction.

All for now, but want to stay in touch.

Zuree (the name of my favorite cat)