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.

Livestrong.com 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

Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

Fibromyalgia is Such a Fickle Disease

Having fibromyalgia is much like dealing with a teenage girl. Not only can you not count on what may be the most important thing in her life tomorrow, you can't count on it to last an hour.  The majority of the day yesterday my pain was Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely. That's where it was when I got up this morning. I sat on my kitchen stool to fix Bill's lunch and took my morning medicine.  When he left for work, I went back to bed and slept another hour and a half.

When I woke up, I felt like a different person. I don't know why it surprised me because on Tuesday it had changed like that while I was shopping. I've taken it easy today and my pain has stayed around a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. I am really excited that it's low because tonight I'm going to have a repeat sleep study.  I'm afraid that it would have been very hard to sleep with all those electrodes stuck in my hair and in a strange bed if my pain was up.  Of course, being as fickle as fibromyalgia is, it could change between now and 8pm when I check in at the sleep study center.

I had a sleep study probably five years ago because Bill was desperate to find a solution to my snoring.  He was on the road for work and roomed with a guy with sleep apnea.  During the night this guy became disconnected from his Cpap and Bill woke up to an all to familiar sound.  When he came home we went to see a sleep specialist and sure enough, that was the problem.  It was so good to get a good nights sleep! The entire family was grateful to get one as well.

I am having the sleep study tonight because the ultrasound of my heart showed that I have an enlargement of my right ventricle.   My cardiologist said that normally this is from sleep apnea.  I truthfully don't understand why he is having me retest since I've already been diagnosed but I trust him to be doing the right thing. If I can remember it, I'm going to ask the people at the sleep center why.  


I've had so much testing done recently trying to find out exactly what is wrong.  My edema isn't just edema, it's lymphedema. If compression hose and specialized lymphedema therapy doesn't solve the problem, then I'll have to see a vascular surgeon.  I still don't understand all I've read about it but apparently there are valves in your legs that open and close to allow the fluid to circulate through your body.  Lymphedema is caused by those valves not functioning properly.  I am a high risk for developing the skin infection called cellulitis. I already have what looks like a sunburn from half way down between the knee and ankle on both legs.  Many days I have what is described in medical writings as a 'tight, glossy, "stretched" appearance of the skin'. When my legs are tight like that, they literally weep fluid out my skin.  At first it was a minor annoyance but within the last month it has gotten to the point that the fluid literally puddles on the floor under my feet.  Now we are trying to figure out why I have this problem.

Next month I'm going back to the neurologist because my cardiologist wants me to have a MRA to clarify the findings of the MRI that I had several weeks ago.  My cardiologist isn't convinced that the ischemic changes that showed up are from past ministrokes.  The MRA will either confirm that I have had the ministrokes or that I have multiple sclerosis. 

It would be hard enough going through this testing for a "healthy" person.  It's a huge challenge going through it with fibromyalgia. I can't not go for my appointments or tests even if my pain is at the top of the chart.  They are too hard to schedule in the first place without trying to reschedule them.  I will be so glad when we finally have answers.  In the meantime, I'll continue to trudge on through with my fickle fibro.