shoulder mobility

I'm wondering if any of you have shoulder mobility issues when your lymphedema flares? To summarize my reason for asking, I had a lymphedema therapist tell me, very strongly, that my inability to raise my arm above shoulder height could not be caused by lymphedema - that it "didn't do that." I'm now feeling like some sort of paranoid hypochondriac. This is all really bothering me far more than it should, but I am upset.

Long story in short form: In 1987, I was hit by a car and had a badly broken shoulder. The doctors couldn't do much for it - it's crooked and I lost almost 20% range of motion. It's actually been surprisingly good all these years. I make sure to strengthen and stretch it - I am a certified personal trainer and fitness instructor. So, I've done pretty well with it and really didn't have any pain. Then in June of 2011, I was diagnosed with Stage 1 breast cancer. I had a lumpectomy, sentential node dissection and radiation. After surgery I developed a large cord and a seroma, which then developed cellulitus. I only lost one lymph node. In the spring of 2012, my shoulder began to stiffen up again and I really felt as if there was fluid in it. My breast surgeon saw pitting edema in the breast tissue underneath my arm. She sent me to the lymphedema therapist, who found lots of lymph in my breast and the back of my upper arm - but mostly my breast. The MLD really helped. I was fitted with a sleeve, a glove (I use this when I lift weights or do any heavy exercise), a gauntlet, a Solaris Tribute night sleeve, swell spots and a FlexiTouch.

While we were waiting for the garments, I began to have a tingling in my forearm and my arm began to feel heavy. I did have some increased volume in my left arm, which went down during the weeks of MLD. My shoulder mobility also returned to normal for me. I could again brush my hair and lift a weight over my head.

That summer, my arm would swell on humid days. I've worn the garments faithfully even since. Last winter, I broke my wrist. The cast had to be removed early because of swelling - it was super tight after a few weeks. My arm actually went back down once I started back with the FlexiTouch and wearing garments again. The Solaris Tribute really works well for me.

This summer, my arm was awful. It's not snapping back when the humidity goes down. I do well with exercise - but I can't sit for long. It really feels awful. I spent as much time as I could, while still doing my job, with the arm wrapped - which it really likes. This fall, I'm getting ridges of lymph in my wrist and elbow. They go down at night in the machine and the night sleeve. This has all been rather scary. My lymphedema is still mild - but it's really interfering with my life - it seems to be worsening. My medical oncologist, suggested I go back for my therapy.

I went for the evaluation. The therapist found my left arm to be smaller than my right arm - but remember, I broke my wrist 6 months before. My strength is good - but still not 100% where it was. She thinks my problems stem from the earlier trauma to my shoulder and the loss of the node put it over the edge. I have always suspected this to be the case. My swelling is worse on my upper arm - at the back of my shoulder just above the sleeve. She suggested being even more aggressive - wearing the glove more often and wrapping more often - when possible. And the therapists would work on my shoulder especially.

When I went for my first treatment, I had the 3rd therapist at the hospital (there are 3 who do lymphedema). She said that since my arm was smaller - I really should try and go without the sleeve when I wasn't actively exercising. She said the sleeve I have fits me perfectly - but that maybe the silicone band on it was causing the swelling above it. I didn't have this swelling last year except in extreme humidity and we've always ordered my sleeves with the silicone bands. She asked if I really did have lymph in my breast in 2012 - or was it maybe just fluid from the radiation? She truly made me feel as if I don't really have lymphedema but that the sleeve is causing all of these problems. She did work on my shoulder - finding some really tightness and odd spots in it - and in my elbow.

The arm felt much better all week, but I was feeling emotionally unhappy. Last Monday, my sleeve was really bothering me around my elbow at the end of the day as it sometimes does, so I decided to humor her and take it off. Hey - maybe there really is nothing wrong with me? I didn't use the machine, nor did I wear the night sleeve. I felt pretty good in the morning - no pain or tingling in the arm. But - I found I couldn't raise my arm above shoulder height. I put on my sleeve and taught class - not well as my arm was not moving well at all. I took the sleeve off again after class to complete the experiment. Then saw her for the appointment in the afternoon where she declared my arm issue couldn't be lymph related. What else could it be from? I hadn't done anything to cause such a problem. She again worked on the shoulder and did MLD - which made my arm much better. That evening I used my machine and wore my night sleeve. My arm was back to normal the next morning.

My question really is could this all be caused by a well-fitting sleeve? And can lymphedema cause a problem in the shoulder like this? My arm does look good - except at the very top where you wouldn't measure. I just can't imagine this is all some craziness in my head - that's not exactly like me - and it's not as if I enjoy having lymphedema. It's been rather frightening really - I'm used to being super healthy. I can't find a lot of information on lymphedema specifically causing shoulder mobility issues though.