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Aug 16, 2014 01:37PM
Welcome, both of you "stars"!
I can just imagine what a struggle it would be to convince a doctor that you're dealing with abdominal LE, when so many of them can't identify garden-variety arm LE, not to mention upper truncal. It is rare with bc treatment, but certainly not unheard of. I have some abdominal LE too, also mostly on my right side (my LE is bilateral in both arms and trunk, but worse on the right).
It's hard to make suggestions without knowing what you've already tried. Do you both have well-trained LE therapists? Have you been taught to do Manual Lymph Drainage with emphasis on the abdomen? Are you clearing neck and groin nodes at all throughout the day? Do you wrap your arm? Has your therapist taught you other practical helps, like staying really well hydrated, using deep abdominal breathing, or doing simple LE exercises at intervals throughout the day? I can manage my abdominal LE with just those measures (and I wear a WearEase cami called a Slimmer that also adds gentle abdominal compression), but many people with abdominal LE use biking shorts to control swelling. It's also possible to order custom abdominal compression garments, but I'd sure try the other methods first.
Lots of things can affect abdominal LE, just like arm LE. Barometric pressure changes, extreme temperatures, lack of exercise, the wrong sort of exercise, weight gain, and for some people salt intake and alcohol. If you can identify triggering mechanisms, that can help your therapist design a self-care program that will help you take control of this and get your life back.
If you need a new therapist, or even just a second opinion, here's how to find one near you:
There are a couple of suggestions here for abdomen/upper leg compression--they'll give you an idea of what kinds of garments you can look for:
And here's a discussion of Swell Spots and other garment inserts--the one on this page are specifically for upper body truncal LE, but they are designed as well for use with abdominal swelling:
StellaStarr, LE is lymph fluid that is trapped all over in the tissues, not pooled like the fluid in a seroma that can be drained. The way to drain the lymph fluid in LE is to clear nearby nodes and gently move the fluid out of the area and toward the nodes by the manual technique of Manual Lymph Drainage (MLD). A well-qualified LE therapist will be able to design a personalized flow pattern for your situation to effectively move that fluid out. Then compression garments keep the fluid from building up again. None of this is easy, because LE is chronic, but practicing some self-care does give us back control. Insist on getting the great help you need!
Gentle hugs, and please, both of you, tell us how we can help,