burning sensation in arm and hand

Matia, LE clinicians recognize Stage 0 lymphedema, which typically presents with zero or minimal swelling. I often get an annoying burning sensation in my LE areas, and in my case, swelling is rarely visible. When I do see it, it's in the armpit area and just below, on my trunk. Like you, I also get puffy around the back. I too had 'only' snb, with 5 nodes removed, and for the same reason I had to push to get the LE possibility taken seriously.

When I was first diagnosed, I had gone for screening because of the area on my trunk under my armpit, which gave me a burning feeling, and was tingly, and looked a little puffy to me. The LE clinic I went to measured my arms as a routine, even though I had no symptoms in my arm. They used a perometer, which bounces lights against the arm to take measures. It's highly accurate, and you could have knocked me over with a feather when I learned that my at-risk arm was 10% larger in volume than my unaffected arm--even though my unaffected arm is my dominant arm, so expected to be a little larger due to added muscle mass. So, I had a volume increase in my snb arm, and it was not at all visible, nor could a standard tape measure pick it up.

Bottom line: just because you can't see it, doesn't mean it's not there, and tingling, a feeling of heaviness, a slight burning sensation--these are all signs that the lymphatic pathways have been interrupted and there's some sluggishness or some blockage in the lymphatic system. In the year after the perometer finding, I did begin to feel the typical LE sensations in my arm. Now, when I've really overdone activity, or when the barometric pressure changes very fast (as in a storm), I get an egg-in-the armpit feeling, that area swells, and the darn limb aches like heck. But still I almost never see any visible arm swelling.

One LE researcher has said that the biggest risk for advanced LE is to have mild, or subclinical (stage 0) LE, so it should be taken seriously, and you should have compression garments and know how to use manual lymph drainage to help relieve your symptoms.

What I don't relate to is your sense that the area feels hot. I'd worry about an infection brewing with that symptom, and also your report of the burning feeling really hot seems more pronounced than the usual reports on LE symptoms. Puffiness argues for LE, and I hope that in your nurse visits you've had vitals checked, so no fever to report. I think you need to be on that waiting list for the LE therapist. How very frustrating!

If you haven't already, check out this wonderful resource, put together by patients for patients, and including a physician--so it's accurate, and you'll see it's also amazingly comprehensive: http://www.stepout-speakup.org

Best wishes for figuring this out...

Carol