Saturday, November 24, 2012

Lymphedema - It's Really Wierd

My "severe edema - lymphedema - severe edema - stasis dermatitis - lymphedema"  has been really weird for the last six months or so.  That's the only word I can think of.  I have always had trouble with edema during the summer but when fall comes around and the temps dropped, it pretty much goes away.  I actually have ankles through fall, winter, spring and even a little of summer.  This summer it came back with a vengeance.  I was back to only being able to wear my stretched out shoes and had a hard time walking. The hard time walking was a new problem from it for me.

An example of how severe swelling can be
For several years, my legs have "weeped" in the summer when they were so swollen.  They were so swollen that they could no longer hold the lymphatic fluid (did you know that we have lymph veins they carry lymph fluid down to your feet and back up again?) that collected in my legs and it was coming out through my skin.  It's just as gross as it sounds and it can range from a tiny drip to feeling like you've turned on a faucet.  Tiny drips feel weird but you get use to it and I keep a hankie close by to blot them.  The "faucet" weeping is scary.  I have one of those hard plastic things so you can roll your office chair on carpet under my sewing table.  Mother's Day this year I was sewing away when I moved my foot into what I thought was a puddle of water.  It wasn't water.  It was lymphatic fluid.  About a half cup full.  From my right leg.  I told you it was gross.

As the summer progressed, my shins became red and warm.  They were angry looking enough that  I  broke down   that Bill insisted that I make an appointment with my Nurse Practitioner to see what was wrong.  Not only did he insist on my going, he spent his day off at the doc's office with me so he got her diagnosis first hand.  The answer did not make either of us happy. 

Stasis Dermatitis Example
The red, warm and angry places on my shins was stasis dermatitis.  I had never heard of stasis dermatitis but when she started mentioning cellulitis she got my attention.  She even mentioned hospitalization and IV diuretics to get it under control.  We left the office with an antibiotic  prescription to hopefully fend off full blown cellulitis (it worked), a prescription for a strong diuretic and one for surgical compression hose.  I was also supposed to stay off my feet and keep them elevated as much as possible.

It was not a good time for staying off my feet.  This was in July and I was sorting, giving away, selling, throwing away and packing for us to be out of our house by August 31.  Out of our 3 bedroom house, with a big attic and a garage full of junk mixed in with the good stuff.  And we downsized too.  From a 1,500 square foot three bedroom house to a 1,094 square foot two bedroom condo.  I had to sort through and get rid of lots of stuff.  And she wanted me to stay off my feet. And keep them propped up.  It made life interesting.  

I hit Google looking for information on lymphedema and stasis dermatitis thinking that maybe I could show Bill that it really wasn't as bad my NP had made it sound.  What I read really made me get serious about staying off my feet as much as I could. has a good article on the 5 Things You Need to Know About Stasis Dermatitis.  Here's my summary of the 5 things:
  1. Stasis dermatitis is a skin condition on your lower legs caused by excess fluid building up under the skin. It cause large sores, bacterial infections of the skin, difficult-to-heal leg ulcers or even bone infection below the ulcers. Like our fibromyalgia, this can be a chronic condition but it can be managed once you determine what is causing the edema.
  2. Medical conditions that cause poor circulation cause stasis dermatitis when the excess fluid build up to severe edema.  When that happens the blood can't do it's job of taking care of the cells or eliminate waste products. This causes your skin to be malnourished and ulcers begin to form. Because the skin is malnourished, ulcers may open that are extremely difficult to heal due to lack of proper nourishment from the blood.
  3. When your lower legs, especially your ankles start to swell, keep a careful watch for stasis dermatitis.  Some people (including me) have a deep ache in the legs. If you skin becomes thin and/or thick and dark it's time to have your doctor check it out. The skin will get really dry and itch like crazy!  DON'T SCRATCH!!!  At this point the skin is so thin that you can open your skin causing them to bleed.  Open skin invites infection.
  4. To treat the stasis dermatitis, your doctor will look for the illness causing you to retain so much extra fluid and get that under control. How it is controlled depends on the cause. (In my case it's caused by venous insufficiency.)  It's very important to improve circulation to the legs to reduce swelling. Compression stockings help but trust me putting them on can be very painful.  One of my fibro symptoms is being tender to touch.  The swelling makes it worse so I was in tears when I put my hose on for several weeks. Prop your feet up anytime you can.  If you can prop them up about your heart, that's even better.  If you've developed skin ulcers your doctor may treat them by prescribing antibiotic ointments and medicated compresses.
  5. Prevention is important. If you have a medical condition that restricts circulation to the legs, take precautions to prevent stasis dermatitis before it gets so bad that ulcers begin to form. If you sit or stand for long periods of time, try to take a break every hour or so to walk around and get your blood moving. I've find that my swelling gets really bad when I loose track of time sitting at the computer.

    I hope this helps take some of the mystery out of lymphedema.  You can find more information at the websites listed below.

    The National Lymphedema Network
    Lymphatic Research Foundation
    The National Library of Medicine
    The Mayo Clinic