Lymphedema Management Starter Pack

Hello there.  It’s me, Veronica.  If you are new to Lymphedema and need some advice on how to get started with treatment and the goal to reduce, this article is for you.  I have promised some of you that I would create an idea that I had for a starter pack.

Well, here’s my take on it.

If you have come to this page, you are probably thinking to yourself, “I’m in pain. I feel like my skin is going to pop. I feel tired and achy, and I just want this all to go away.  I want life the way it was before this all happened.”  Yes, me too.  Don’t we all.  It’s true. That’s exactly how it feels.  The most common question I see is “Now what do I do?  Please someone help me.”

This is where the Lymphedema Starter Pack comes into play to help you Stay Lymphie Strong.  The following tips are what you need to know to jumpstart your reduction.

Let’s talk alphabet soup.  CDT, MLD, CLT – what does this all mean???  Think of it as the Lymphie lingo or code for REDUCTION and successful management so you can get on with your life and do the things you need to get done.

• CDT (Complete Decongestive Therapy) with a certified Lymphedema therapist (CLT) needs to start ASAP.
  • Ask your doctor to make a referral to either a standalone clinic or hospital.  You local cancer hospital will more than likely have staff dedicated to Lymphedema treatment.  Do not delay. Do not take no for an answer.
  • Appointments get  booked up fast.  Ask them what their specific requirements are for a referral. Sometimes the wording has to be correct.
  • What is CDT? Complete Decongestive Therapy is a treatment performed by a highly trained certified therapist using short stretch bandages on the affected Lymphedema limb.  There are many layers involved. You typically have a sock layer, a foam layer, and bandage layers.  These bandages exert what is known as working pressure against your body to push fluid up and out of your body.
  • Exercise in bandages during CDT. No matter how slow you go. If you can’t do a 20 minute walk, make a goal to walk to the bathroom 5x a day. Setup an alarm on your computer to remind you to get up and walk down the hallway and back.
  • CDT lasts anywhere from 6-8 weeks depending on your LE stage. Yes, don’t be shocked.
  • While you are wearing bandages you can do specific exercises.  Here’s a cute video.
  • Bandages will get loose and fall down.  This is normal, and it means that the process is working. Don’t freak out! It happens to all of us.

• Learning self MLD (manual lymphatic drainage)
  • Manual Lymphatic Drainage is a series of light strokes used against the skin to stimulate the lymph nodes to help transport fluid.  It must be done in a specific order in order to avoid one part from being overloaded. Think of LE as a traffic jam in your body. Your therapist should educate you on this process.  This is the best thing you can learn in managing your Lymphedema for the rest of your life!  Do not get discharged without feeling confident on how to do this on your own or have a caregiver do it for you.
  • Ask questions or request to video the sessions so that you can commit the sequence to long term memory.
• Compression Compliance
  • Once you complete CDT Phase 1, your therapist will talk to you about your compression options for Phase 2.
  • Options may include the following:
    • Continue using short-stretch bandages
    • Compression stockings (Quick Compression 101 link from the Lymphatic Education & Research Network)
    • Compression alternatives like those with Velcro
  • Your compression options are totally up to you. There is no right or wrong way.  It may depend on your budget and what your insurance approves. Doesn’t matter which one you pick, just stick with it!!
  • Yes, it will be horrible in the summer.  Too bad.  Heat affects Lymphedema, and you will swell more without them.
  • Don’t buy compression before your CDT is completed. If you buy them too soon, they’ll just fall down. Waste of money.
• Diet by eliminating foods that cause inflammation/food sensitivity
  • The cheapest way to do this is to create an account My Fitness Pal and start journaling every single thing you eat. Make notes on whether they help your swelling or hurt your swelling.  If it hurts your swelling, put them on the “Foods to Avoid” list.  EVERYONE IS DIFFERENT! Our food sensitivities are as unique as our DNA. Some people can have bread and others pay the price for that bread basket at their favorite restaurant.
• Exercise every day at least 30 minutes (water is best)
  • You don’t have to have a gym membership. Walk up and down your hallway.  Pick up a can of soup and do bicep and triceps exercises. Find an exercise DVD that you like.
  • If you have a gym membership, GREAT! Use it.
  • If they have a pool, jump in there and start walking. Don’t worry about the stares or comments. I grabbed a swimming lane when I first started. All I did was walk back and forth.
  • Start out slow and build as you get stronger.  Remember to stretch before and after.
• Wearing compression during exercise except in water
  • If you exercise without compression, the good lymph vessels in your body will take on the load of the bad or missing vessels. Over time they will fail too like a bad chain reaction.  Do not do this disservice to yourself!!  Speaking from personal experience here.
• Proper 7-8 hours sleep
  • Sleeping 7 or more hours a day allows your body to release hormones that repair damage and inflammation. Take advantage of your body’s own natural defense mechanism and get a good night’s sleep.
• Proper hydration
  • Our entire body is made up of water. Every single cell uses water.  That lymph fluid has to go somewhere and that is usually out through your kidneys. The general rule of thumb is to drink 1/2 your body weight in ounces. (100 lbs = 50 oz)
  • Check with your doctor if you have concerns about the correct amount.
• Strive towards or maintain ideal weight
  • I know. I know. Like you need yet another person telling you to drop weight. Don’t shoot the messenger, but it’s true.  Try your best to drop the weight. I am personally struggling due to an endocrine issue I have. However, this is really important. The food diary and water consumption plus exercise should help in this area.

You might say all of this is fine and dandy, but I don’t have insurance or my appointment is next month. I can’t wait that long!!

I hear you loud and clear.

Lymphedema Management Mini Starter Pack

Start with the basics and do this until you get to a therapist.  The good news is you will be somewhat ahead of the education process, which is great. 

• Self MLD am and pm using your hands or a dry boar bristle brush (available at any drugstore). 
  • There are tons of MLD videos online.  My personal favorite are the ones on You Tube by Massage by Heather. Again, personal preference. I do this in addition to the mld my therapist taught me. It helps break up the monotony of doing it.
  • This video is the best explanation of how dry brushing can help as a tool in your arsenal against Lymphedema, in my humble opinion. 

• After doing MLD, meditate for 5 minutes. Listen to soft music, pray, or do whatever it is that calms you. Light a scented candle or just relax.
• Keep a food diary by creating an account on myfitnesspal.com and start tracking everything you eat. In the notes section of the diary, comment on how it made your swelling go up or down. If it went up, put it on your Foods To Avoid list.
• Drink water and record you water intake on the My Fitness Pal account too.
  • You can add cucumbers, strawberries, and fresh mint to a pitcher of it. Other great pairings are pineapple slices with blueberries, even lemon slices and grapefruit. Search Pinterest for infused water ideas.
    
• Eliminate processed foods – no donuts, bread, desserts, cookies, chips, etc. and avoid alcohol, avoid fast food drive-thrus
  
• Call a local cancer hospital. Ask for the patient care coordinator or liaison in the Administration dept. Setup an appointment to discuss how to apply for sessions with a certified LE therapist based on need.
  Take documents that show why you need it. They might not be able to help, but it’s worth trying.
  
• Reduce stress in your life – Stress naturally releases cortisol in your body, which causes more inflammation if unused. Don’t let go of hobbies or activities that make you happy.
• Get some sleep – The human body needs 7-8 hours to restore and heal overnight. Hormones are released during sleep that repair inflammation.
  

I am just a patient trying to Stay Lymphie Strong just like everybody else, and while I have reduced I do have to maintain every single day.  I hope you have found this information to be helpful as a cheat sheet for what you need to get going.  I wish I had had it when I first got started.

Please discuss all treatment plans and strategies with your healthcare professional.

Remember, Stay Lymphie Strong!

–Veronica

Learning more and connecting with others can be a source of support and comfort.

Visit our lymphedema groups to find what’s right for you.