I'm struggling........

sheri56

I had lymph nodes removed in Oct 2010. Lymphedema started within a couple weeks. Went to a Lymphedema Specialist, got a sleeve and glove and things were under control for almost 2 years. This summer (I live in a high desert area where it is very hot in the summer) for some unknown reason my arm and hand started swelling again. Went back to my Lymphedema Specialist and she started MLD and showed me how to wrap my arm and hand again. She also ordered class 2 garments for me. Well, the class 2 garments came after being on backorder for several weeks. And the glove didn't fit well and caused my hand to swell even more. So now she gave me a prescription to get a custom made glove. In the meantime, while the glove is being made, she showed me a way to wrap my hand while wearing the sleeve. I am trying to wrap it and leave it on as long as I can each day. When I take it off, my hand is still very puffy. I am so tired of this! I wear a night garment for as long as I can but usually end up taking it off during the night as I can't sleep well with it on. It just seems the wrapping and garments aren't doing much. I am tempted to see a different Lymphedema Specialist but hate to start from scratch again. What do you do when wrapping and/or the sleeve and glove don't help?

Thanks for letting me vent. I know everyone here struggles with lymphedema issues. It's such a burden

kira66715

Sheri, sometimes we flare, and who knows what caused it? The heat, the altitude, more activity, some decline in lymphatic function?

Binney and I have noted that we get emtional devestation when we flare, sort of out of proportion, but it's a condition that defies logic--we do the right things, and our bodies don't respond.

Hands are tough. I have hand swelling.

I think it's time to break it down and rexamine each component of your care:

1) The night garment: does it still fit well? Some aren't great on compressing the hands. At times like this, wrapping can give you the custom fit you may need, or you may need a new garment or to use a short stretch or pad over the problem areas.

2) Hand swelling: tough, tough, tough. The sleeve pushes fluid up and it's easy to trap fluid at the wrist. A good hand wrap helps a lot, but may not win the battle of "gradient compression" with the sleeve, and fluid goes to the lower pressure

3) Therapist input: is she doing MLD on you?

There's a huge thread about garments as we all struggle with them. Personally, even with my pricey custom Juzo gloves, they trap fluid up by my knuckles. When my hand was at it's worse, I did a lot of hand wraps, stuck pads into the gloves, just experimented constantly and expensively.

For me, night time wrapping is the key to daytime freedome from compression, and I have a closet full of jovipaks and Tributes that don't work all that well for me....

LE defies logic. And it sucks.

I'm going to put in an illustration of hand wrapping:

And MLD of the hand--mostly the palm side

The arm sequence:

sheri56

Thank you Kira! I had printed out your illustration of hand wrapping when I started wrapping again a couple weeks ago. It was very helpful.

I guess there aren't any easy answers to lymphedema and everyone is different. Never in my wildest dreams did I think I would be dealing with a complication from Breast Cancer surgery for years after my treatments. Yes, it  does sucks!

I also struggle with people asking over and over, "what happened to your arm?" as I work in a customer service type of job. At least I am spreading the word about a side effect of breast cancer-lymphedema which very few people are aware of.

I am so very thankful I have this forum to visit. It helps to know I am not alone....

kira66715

You are not alone, and it does suck, and what's with the whole shame thing? I know I have it, like I had no shame about when I had a cast, but I'll tuck my gloved hand in my pocket when I meet neighbors on a walk



Personally, my hand swelling settled down, and KS1 had a serious bout of hand swelling that has finally responded, so it tends to get better.