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Sharing 25 Years of Experience as a Lymphedema Patient

  • I have had lymphedema for all 25 years(so far) that I have been on this earth. There is an astonishing amount of misinformation and lack of information available for patients and professionals, so I thought I would share my experience. If you can add to this feel free to message me (I love updates as I'm sure we all do).
    What is Lymphedema/Lymphoedema?
    -This is a blanket term used to describe problems, somewhere in the wide complex lymphatic system, that is causing a dysfunction in how the lymphatic fluid returns to the bloodstream. This results in a build up of that fluid, which is observed as swelling. lymph- lymph system. edema- swelling.
    What are some symptoms of Lymphedema/Lymphoedema?
    -Digestive Problems (Overlooked the most) - vessels absorb and transport fatty acids and fats as chyle from the digestive system, so when they are not functioning properly a lot can go wrong.
    -Swelling(redundant I know)- fluid that is not reclaimed properly will collect and cause swelling that can even become hardened. Always look for secondary complications of the swelling such as:
    -Pain- swelling can press on and even decrease blood flow to a number of important things, though not often discussed this should be obvious. YES it hurts, and can hurt enough to cause severe reactions to the pain itself. It may take some logical thinking or social skills to properly asses your patients pain. Patients, we really have to stop believing that telling your doctor what is painful makes you weak or a burden. It is a useful assessment tool. 
    -Blood clots- Have doctors check for 'em, and get 'em dealt with. I am not going to explain much, as trying to treat them yourself is not a good idea.
    -Social and Psychological Disorder - swelling can be seen, and impacts daily life in every way. Seek proper coping mechanisms and avoid treating social problems as chemical imbalance problems. 
    What is the Lymphatic System?
    -After blood flows to an area, not all of it is reclaimed by blood vessels. Some water, leukocytes (white blood cells), and proteins come together. This combination becomes lymphatic fluid (lymph fluid), which travels together through lymphatic vessels. Lymphatic fluid is moved by smooth muscles on autopilot (parasympathetic nervous system controlled) naturally toward lymphatic nodes (where leukocytes fight baddies) and then back into the blood. It is important to remember that the lymphatic systems regulate the flow amount with valves, which are commonly damaged during maintenance therapy, and does not rid excess fluid itself.
    What does get rid of the excess fluid then?
    -Your kidneys. They are so important and are often not discussed. Do some research on them so you can avoid negatively affecting them with diet, treatment, or habits. 
    How do I treat Lymphedema?
    -Lots of people get confused here, as Lymphedema is a symptom, and still called a disease itself. Treating lymphedema is case by case and complex, involving advanced medical imaging and microsurgery techniques to repair the lymphatic fluid flow. While you find treatment, the edema itself is managed through maintenance therapy. 
    Maintenance therapy comes in four major parts with different brand names: 
    Keeping the kidneys healthy so the body rids itself of the excess fluid, not damaging the lymphatic system that is still healthy, moving lymphatic fluid back into the bloodstream steadily, and making sure you avoid the infection of skin cuts or sores. When using compression devices of any kind it is important to note that compression over 40mmHg(millimeters of mercury) or roughly 5332 pascals(international system) can damage circulatory valves. Make sure there is not a gap in any compression and healthy reclamation, this can cause a high protein blockade to build up that will need to be treated before you can continue reclaiming. 
    How do I move the fluid gently?
    -Learn the flow directions of your lymph pathways and lightly sweep across the skin in this direction to coax lymph into move back into the blood stream. There is a beginners guide, that is very effective, called "Manual Lymph Drainage" massage.
    -Wear compression garments every second possible until treatment(sports and exercise clothing is often useful, it compresses lightly and is usually durable) , and do not use compression that becomes uneven. Waistband, stocking bunching, bandage rolling, and anything sock band strength or higher can block lymphatic flow. A professional can show you this on a healthy vessel by lightly blocking it and sweeping a finger along the vessel. This will move the fluid and the vessel will become flattened, so that you can see how light touch actually blocks and moves fluid.
    Other Things I have Learned that are Important:
    -Every second without stockings or other compression causes a gap in the fluid flow, more will be made(you will notice you get thirsty after a short while) and more fluid will be pooling.
    -Bandages are from the stone age. Use them only if you cannot get a compression device that will not roll or crease, and has pressure regulation. Bandages have done permanent damage, and the temporary benefits and hours are not even close to worth it. Several studies have proven there are many more effective options. This is a health insurance company issue. If there is no choice for you they are useful as long as they are not pulled too tight, have proper padding before application, and do not move AT ALL from the extremely specific pattern of application.
    -If your insurance doesn't cover equipment... Everything has at least 1 public review page. Not paying for the medical equipment you require to treat chronic medical issues PROPERLY makes an insurance company a pyramid scheme. Warn the public, and keep calling. Find a Case Manager, some companies even have their own available. They are there on purpose to help with these things.
    -Again reviews, write them. Anywhere you go for medical treatment. Let other people know the level of care you received. It helps the good guys and cuts out the bad.
    -Avoid harsh chemicals, especially non medical, like caffeine or cigarettes. Changing your systems balance quickly is bad, the ship is already unsteady.
    -Again avoid going over the pressure limit as much as possible.
    -Exercise - Yes it is important to stay active. You want what is referred to as "passive movement" to support maintenance therapy, or very low muscle engagement. You can pinch the pathways against the outer layer of skin and block movement of fluid. Try to avoid an increased heart rate when not supported by compression. (Doctor Jose Maria Pereira de Godoy and his wife Doctor Maria de Fátima Guerreiro de Godoy make a machines that aid in passive movement for limbs. They also did one of the studies in the United States to show how far medicine is behind. Both were proven more effective in under 2 weeks with several cases ranging from mild to severe swelling.)
    -Avoid dehydration. Things will slow and harden. Lymph fluids, and furthermore humans, are basically water with extra stuff. So yes it is important to maintain a healthy BALANCE. Too much is way less of an issue than too little, but you can swell and die from too much water.
    -You must become very aware of your diet, this should not include more than the minimum required sodium, and do not ingest things that contain too much that your body doesn't need (you have enough of that as it is). Welcome to your new life as the city "Health Nut". Find fresh produce, find fresh meat, filter your water, filter your air, disinfect things.
    -For the record never allow someone to refer to your swelling by the name elephantiasis. Do not allow it AT ALL EVER. This term is centuries old and still in use. elephant (root, greek) and iasis (latin suffix-asis-disease). Walking up to someone with swelling from anything and saying that they have elephants disease is not just inconsiderate... it is sociopathic. Do not allow it.
    !!!DO NOT LOSE HOPE!!! - 
    -Most I have met that are involved in treatment haven't looked into it enough to even pronounce the slur elephantiasis correctly. Few doctors even know about it, but helpful medical professionals exist i promise(My current primary care physician told me it was impossible to be born with underdeveloped lymphatics... really). The ones involved in progressing research and finding new treatments are all geniuses when you find them, and it will be a relief.
    -You can find love. Ugly is an opinion that often has to do more with the person labeling you, than your appearance. Good luck, and stay strong.