Managing Lymphedema

I remember waking up and my left foot hurt and was throbbing. I thought I'd twisted it while running the day before in gym. It felt like it was stretching. I could feel the skin getting tighter and my toes felt like something was stuck between them and I couldn't move them very much. I went to get up and I grab hold my leg and had to sit back down on the bed. I looked down at the foot and it looked like one of those feet in the cartoons that blow up when it gets hit with a hammer. I soaked with Epsom salt, it did feel Great, but the foot got bigger. Went to school by my third period (I was in the 7th grade)class I was limping. Saw the school nurse she thought I'd sprung it so she sent me home had to get a doctors note to come back.

I went to see family doctor and he didn't know what it was said it was because I have flat feet. gave me a referral to a foot doctor. He told me true I did have flat feet, but this was nothing to do with that. He told me it was lymphedema and there was nothing that could be done for it. That I'd have to learn to live with it. The swelling would come and go, I'd notice the changes what would happened to the foot when the weather or the temperature changed. In hot temperatures it would swell more, I couldn't take the cold had to double and sometimes triple my socks. I'd sleep in socks that seemed to help keep the swelling down. I learned to live with it, my own way, found ways that would work and others that didn't.

As time went on and I started to have children, the swelling started to travel up the left leg. While I was pregnant with my first child both legs swelled, which is natural being pregnant and the body holds water. Just after I had her, the right leg went down to normal, but the left leg stayed swollen mid way the calf down. Then after each child it got higher, after the last child 18 year ago the swelling was to mid-way the left knee. This is the way it started for me. Through research I learn watch and how to care for this disease. I learned that with just even a little gain of knowledge comes peace of Mind in the understanding.

I told the doctor of the research I'd done, and I ask him the elephant mans disease? He said no, a lot of people get it mixed up with it. But, it a little lot different, what Joseph Merrick (his real name and not John Merrick) had was a:

congenital disorder involves defects in or damage to a developing fetus. It may be the result of genetic abnormalities, the intrauterine (uterus) environment, errors of morphogenesis, or a chromosomal abnormality. The outcome of the disorder will further depend on complex interactions between the pre-natal deficit and the post-natal environment.^[1] Congenital disorders vary widely in causation and abnormalities. Any substance that causes birth defects is known as a teratogen. The older term congenital [1] disorder does not necessarily refer to a genetic disorder despite the similarity of the words.

I have lymphedema. He explained it to me like this; beaver that builds a damm, thus making the water stop flowing freely. In my case, that beaver hid that damm and all the searching and modern technological testing can not find where it is stopped up at. I've have had test to determined where the blockage is but the test showed everything was flowing find. Had the heart checked out also, at that time it was fine.

Lymphatic System

The lymph-vessels are superficial, laying just under the skin, but the lymph-nodes are located in your neck, underarms, and groin area. Lymph systems has a mighty big roll in your bodies immune functions and the circulation. What it does is clean your system out of all the impurities. Its like a ship, no better yet a tug boat. It moves the fluid out, in doing so it takes the waste products, bacteria, dead cells, the big protein molecules and it cleans it..the waste products are carried to the lymph nodes and broken down and eliminated, and the rich protein fluid goes back to the heart to re-circulate. This is when it flows alright doing what is suppose to do.

But, when it (Tug boat lymph vessels) can't move that fluid back into circulation it starts to build up, thus resulting in swelling, thickening and discoloration of the skin. This build up of the protein-rich fluid is called Lymphedema, if not treated in time and effectively the swelling will increase. Weight gain, heat, stress, and the other factors mentioned below will cause it to swell even more. I've had to have both knees replaced. That has aggravated the lymphedema greatly, I've had a staff infection, End Stage Renal Disease (ESRD) also contribued to the aggravation.

Lymphedema-Development

Lymphedema swelling will develop usually in limbs; either one arm or both same with the legs sometimes all at the same time. It can also happened in the hands, feet (like mine), even the neck, face abdomen, back chest and genitals.

There are two types of Lymphedema:

• Primary Lymphedema, which is cause when the lymphatic system has some malformations. This type is most common in women. This is the type I have. You could be born with this malformation or develop it later, often during puberty or pregnancy much like myself. It is more usual to become present in the legs, but it can occur in the arms or torso.

• Secondary Lymphedema, happens because of damage to the lymphatic system. Like Mastectomies, lumpectomies with radiation, removal of lymph nodes. These are the most common causes. Now this type comes or settles most commonly in the arms, and/or may develop in the legs. There are other triggers traumatis injury, infection or severe chronic venous insufficiency

The Secondary Lymphedema, can develop right away, months, or even years or Not...at all. I started to notice my feet and legs hurt and my shoes were fitting tight.

What are the symptoms?

The most obvious is the swelling, but there will be pitting and also you can recognize it when you push on the skin and your finger print is embedded in you skin. The swollen area will feel like a heavy weight..for myself is like lifting a 5-9 hundred pound lead weight...the left leg will weigh very close to a 100lbs under normal times. But, when the weather is hot it can be so heavy I can't lift it and my body has too work twice as hard when its out of the norm for me.

Lymphedema Treatment

In treating Lymphedema the goal is to maintain and reduce the swelling, using the Complete Decongestive Therapy (CDT). Its safe, very reliable (When Used as Instructed..) and non-invasive. And it can does give long-term and positive results for both Primary & Secondary Lymphedema. When first starting out, CDT should be preform by specially trained therapists. They will teach you as to how to preform your own treatments. If you have spouse, friend, family member bring them with to so they also can be taught which would be a great help for you and your care. The massaging and some wrapping, you  will need another person to help. This holds very true if the lymphedema is on the arm/s.

CDT, consists of four components;

1. Manual Lymph Drainage (MLD)- Its a ( see demo of Left Lower Extremity Self-Lymphatic Drainage Technique) hands-on technique (gentle) that stimulates the flow of the lymph vessels and manually moves the lymph fluid out. When you keep up with treatments and applied correctly it will generally decrease the size of the affected limb to a near normal or normal size. The bandages are applied just after the massage to help achieve the reduction.

2. Graduated Compression Garments- These are a must have, if you are active outside your home. They also help to maintain the reduced limb/s swelling. You use the compression garment in place of the wraps when you go about your daily errands. A person certified in lymphedema Treatments will have to measure you for your garments and instruct you in the care of them and how to put them on. The first few times will take you about 20 minuets, but don't worry you will get better at it, trust me. If you use those surgical gloves they help a great deal you can get a good grip on the garment and will lessen the risk in tearing them. It is very important that if you should gain or lose (and you will) weight contact your Therapist and let them know so they can inform the doctor to get you in to get fitted for a new compression garment/s.

3. Therapeutic Exercises- your doctor or therapist may recommend an exercise program. They may compile one that's suited for you, with your limitations in mind as well. The program will help to tone up the muscular system and in doing this it will aid to move the lymph fluid out of the affected limb/s. You will be sore the first 1-2 weeks. Try not to over do, exercises that causes pain and soreness should be thought and discussed with your therapist.

4. Meticulous Skin Care- and this is the most important. Using a good moisturizer that is low-pH lotion, and alcohol and fragrance free, on your arms and legs will help aide in not getting dry cracking skin. The swelling, will at times get so bad that the underside of the toes will split open. Causing you to be so very susceptible to get infection in the open areas.

5. Pneumatic Compression Pump- This is a Fantastic piece of medical technology. I love this treatment, it take 30 minuets each limb. Your treatment may at times include the compression pump. It works as a sleeve with chambers that alternate inflating with air. Gently pushing the fluid back into your circulatory system to void it out. It is sometimes used with the CDT.

CDT- has two phases

1. To move the lymph fluid out of the affected area, thus reducing the swelling when you use the MLD techniques and the Wrapping. This is a daily regiment five days a week for like 2-4 weeks. And it depends on how swollen the limb/s are. (Myself, I wrap them at night before bed and if I don't have to leave out of the house the next day. I just leave them wrapped, and keep them elevated. When I wrap them I can't get shoes on and the shoe I have are already 3 sizes my normal wear. Because, my feet are so swollen and both are different sizes I have to purchase two of the same shoe in different sizes so that they would fit on my feet.)
2. Is the largest role of your treatment; your own on going self-care. Performing self-manual lymph drainage and therapeutic exercises, wearing the compression garments and most importantly being meticulous about your skin care. Remember You Are you Own worst enemy and only you can preform the continuous care needed to Manage your Lymphedema.

Medications-though I am Not a medical doctor and I am not saying the following to lead you away from the medical care that your doctors gives you. But, I've found that diuretics are not good for lymphedema. Because, after you stop taking them you blow up twice as big. Again, I'm Not saying this to have you go against your doctors care for you. Keep a note book and write down things you noticed while on the medication (you should do this with any medication you take) and what happens when you (doctors takes you off of meds) stop taking it. Make an appointment to go and sit and talk with your doctor of the things you noticed, become an active part of Your own health care.

I can tell you, that having the limbs wrapped and elevated you will find that you will be voiding a lot more. Because what is happening is that the fluid is being pushed out and into the bladder for you to get rid of. This is what the Manual Lymph Drainage does.

Please keep in mind that there is no cure for lymphedema..so I've been told. My legs have gone down to normal size and stayed for two months and then became swollen again. I can tell you when they did go down a visiting pastor prayed over me...I can not tell you as to why they became swollen again..it was not long after that I develop the End Stage Renal Disease. I do still believe in the power of prayer, and He (creator God) did it once and He'll do it again. This is my belief in this.

If needing a place to exercise I would highly recommend the 'YMCA'. They have scholarship programs of various types and the information they require is not a lot. There you would have access to a pool, and to exercise in water would be the best. They have other fitness programs that are free to members. If you have little one most offer babysitting as well. The 'YMCA' is a great place for family together time. Just remember to bring your swim suite, towel, a lock and a bottle of water, your own music helps a lot too.

It will be hard at first, but just keep with it develop a system that works best for you. Anything new can become second Nature over time. Don't let the Lymphedema to control you, You control it.