Random Lymphedema Side Effects...?

Hwally

Hi All,

I had a lymphnode removed via biopsy this year (scarred due to infection) and over the last few months have been receiving treatment for lymphedema as a result of the surgery. I have swelling in my hand and some in my arm. My treatment seems to have worked and I am at a more managable state due to the great therapists I have.

I wonder if anyone can tell me any side effects they have noticed of lymphedema. Lately when my lymphedema is acting up and my arm is feeling heavy I notice that I feel so much more fatigued/depressed than on a normal day. Does anyone else get this? I know that if you are under treatment for other issues like many of you are that fatigue might be just part of your life. I'm asking specifically for those like me that might just have lymphedema as a result of a biopsy/other reason.

I've also found that if I have anything more than one or two alcoholic drinks my lymphedema seems to act up a few days later in response (heavy feeling in arm, swelling feels worse). Its not like I'm an alcoholic here, but I am 27 and its hard to feel like I can't go out with my friends on weekends.

I also get little calcified spots on the skin where I have swelling. They feel like tiny hard bumps under the skin and seem to go away at random.

Thoughts?

o2bhealthy

Yes, Yes and yes! 

When I have a LE flare it affects me emotionally. I get depressed and anxious, frustrated and impatient.   I feel exhausted and overwhelmed.  It is not uncommon to be more emotional when LE is flaring up.

For some of us alcohol can trigger a flare...alcohol dehydrates the body and we need to be well hydrated. When I go out with friends, I order 2 glasses of water for every adult beverage I drink to keep hydrated.

I get little raised red bumps on my arms...they are almost like pimples with white centers and if I scratch at or squeeze the white hard center comes out.  I have not idea what it is...I often wonder if it is my bodies response to be constantly in the compression garments...I always have the bumps, sometimes it seems like they are plentiful and other times there are only a few, at least they do not hurt, they are just unattractive.

Just wanted to share and let you know that you are not alone...

Hwally

I haven't tried scratching them - I just leave them alone because I am terrified of causing cellulitis or an infection. I had wondered if they were maybe calcifications - like the lymph fluid was hardening into little spots? I guess we will never know.

Thanks for the share. I will try the drinking of water along with alcohol and see if that helps. Here's hoping because I need those times out to relax with all this going on - ha!

Binney4

Hwally, welcome! Awfully sorry for the reason you're here, though. Flares do have an emotional component. Sometimes depression, sometimes panic. Some of us have been really interested in this phenomenon, because the emotional reaction can seem way out of proportion to the flare, so we're theorizing an actual physiologic trigger to the reaction.

One thing to note when you're going through a flare is that the strong emotions can make it hard to do self-MLD effectively. We tend to speed up and use too much pressure in an effort to hurry the healing along. Also, if you do self-wrapping you need to be attentive in order to avoid wrapping to tight. Gentle and slow works faster to restore control than rough and too fast.

Staying well hydrated is especially hard for me in the winter--when it's hot the need to drink lots is obvious, but when it's cooler the urgency is less. This time of year I have to leave water in several places around the house so it jogs me to drink more often. Tina (who is an artist) resorts to making herself beautiful posters saying "DRINK!" to remind herself. Whatever works!

Any time you have "bumps" on the skin you do want to watch them for any signs of cellulitis, and treat accordingly:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm
But like o2be above I too get those weird little "pimples." Be careful about rubbing or picking at them, as any skin break (even a tiny one) is a hazard for us. <sigh!>

I'm sure others will be along with their experiences too. Be well!
Binney

hugz4u

O2b, If you have had those bumps on you since  you were a infant then that is usually called baby ecema. Their is another formal name for it. My daughter had them since birth and they are notorious to be on the side of you upper arms and side of legs. I talked to doc years ago and he said they were harmless and not itchy but this condition nevers go away.

The bumps that are newly forming such as on my arm I swear is from LE garments rubbing. I bet a lot of grils have that here.

o2bhealthy

Thanks Hugz...these bumps have only appeared since LE and garments...I think my skin just want to breath and since it cannot it errupts in these bumps...