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

Just a quick check in

It's almost 1am Tuesday night/Wednesday morning. I'm back in bed after my early evening nap. I should have kept my mouth shut about hoping to have 3 good days in a row. Monday I slept 14 or 15 hours until a wrong number called and woke me up. I felt awful about sleeping because it was Bill's day off. Bless his heart, he can tell what's going on with me even when I can't or at least won't admit it. Today was even worse and I'm starting to think I need to go to the doc but I don't know which one. I hope I'll feel up to writing to
catch this up tomorrow. Until then, good night n

Good days, Bad days and Learning to Adapt: September 10 - 17, 2010

This past week has been one of ups and downs much like the week before. Tuesday we went to visit Bill's mother but my legs were hurting so bad that I sat in the car and napped while they shopped at Walmart.  I knew I would never be able to make it through the store.  Friday I had to go to the store if we were going to eat and I was exhausted from the walking when I finished.  Had I remembered to get one, I would have used one of the motorized carts but I didn't remember until I was halfway through with my shopping and wondering if I was going to make it to the check out.

Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night.  When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk.  To say that I walk like an old lady would be an insult to old ladies!  Most of them walk better than I do. 

I've tried to accomplish as much as I possibly can during these good weeks.  I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while.  I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive.  It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.

With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful.  I say less painful because there is no such thing in my life as pain free anymore.  Hand sewing is difficult because of  the arthritis in my hands.  Thank goodness for my sewing machine.  Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad.  Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal.  I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option.  I spent most of the last week feeling as though my legs were on fire under my skin.  My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal.  Being able to sew with the push of a button was good.  Anything I can do like that helps with the depression.  I WANT to be a productive member of society.  Unfortunately, MY BODY WILL NOT cooperate.

As I type this, my right hand is swollen and hurts.  Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others.  The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some. 

Memory becomes a bigger problem every day.  I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find .  I've also started putting  notes from important phone calls there as well because I forget what arrangements, etc.  I've made about our bills and that kind of thing.  I've got notes in my phone too.  The notes in my phone have kept me from buying patterns or supplies that I already have more than once.  There's a reason that pattern was cute - I've already bought it.  Yes, I did need a 3" block template - last month when I bought it.

It's time to rest my hands because my pain is up to a 7 or 8 from writing this.  Thank you for sharing my life.

September 9, 2010 - Pain level = 7

My son picked me up this morning for us to go to see the ribbon cutting for the new Engineering building at Jackson State University.  He's a Civil Engineering major.  After the ribbon cutting, we walked over to the student center and bought a soft drink so that I could take my pain pill.  I started out doing pretty well but then the pain in my right knee and hip started going up. The pain got up to about at 9 or 10 but the pain medication helped bring it back down to about a 7 or 8. When I got back to my daughters, I took another pain pill and a nap.  The nap helped a little and kept the pain down around a 7. It's still around a 7 so no playing with the grandchildren tonight.  :-(  My feet and legs are swollen horribly and so I'm wearing my compression hose.  Trouble with that is that my most severe myofasical pain is where my legs swell the most making the hose extremely tight.  My legs were hurting so badly, I had to take the hose off and cried taking them off they were so tight and painful.  I'm headed to bed now and I hope that when I wake up in the morning, all my pain  will be back down to a 5.  It's so sad that my "normal" is considered to be bad pain by most people.

Welcome to My Life with Fibromyalgia Pain

This blog is going to serve as my pain diary.  Pain diary you ask?  Yes, Pain diary.  I am in the process of applying for Social Security Disability.  I’ve already been denied twice and now I’m waiting for a hearing before an Administrative Law Judge.  Part of the evidence that my attorney and I will submit is my pain diary. I began keeping a pain diary when I first got too sick to work.  It was hand written and in a big official looking black bound journal.  The problem is, my hands hurt so badly at times that I can’t hold the pen to write.  If I keep trying, I may be able to write a little but even I can’t read it.  For some reason typing isn’t as difficult.  I thought of just having a typed journal kept safe on my hard drive to print off and take to the hearing.  Then I decided that if I was able to help just one person by sharing how I became ill and my trials with life that it was worth putting it out for all to see.

What's Wrong With Me

I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week.  Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office.  On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.

I am not alone.  Fibromyalgia alone affects over three million people in the United States alone.  You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty.  Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work.  I had finally gotten a college degree at 52 and begun a career as a paralegal.  When people ask me why I don't work, I tend to want to slap them.  Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college.  I tell them about how I started being unable to remember how to do tasks in my new job.  I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how.  I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up.  I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know.  It was at that point that I knew I had to let my pain win and give up.  I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.

How Did I Get Here?

I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old.   GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection.  GBS initially affects the peripheral nervous system. I believe that I  had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs.  MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome.  When I had MFS, I could walk ok.  The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps

I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.

Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.

My Pain for Today

September 2, 2010: My pain today has gone up and down from the usual 5 to a 9.  I’ve had a headache and hurt so bad that I slept about 18 hours of the last 24. I managed to get up for a couple of hours to drag myself to the bank with Bill to sign some paperwork. As soon as I got home I went back to bed and slept from 9:45 a.m. to 3:30 p.m. Got up, took some more medicine and was back asleep till 6:15 p.m. I had no energy to do anything but sleep.