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Information on Lymphedema

Lymphedema is a chronic disease that comes from the failure of the lymphatic system. Like many diseases that mostly affect women there is still much to learn about the disease. Because of this there may be many who live their life with lymphedema without knowing they have it.

The fact that our vascular system contains veins is common fact known to most.
Parallel to these, we also have a vascular system of lymph vessels, these are intended to drain out the tissue fluid that the vein system can not handle.
Our bodily organs have a protective ‘membrane’ around them which contains tissue fluid, connective tissue and fat.
The lymphatic system causes excess fluid and waste substances that accumulate in these ‘membranes’ to the blood stream.
This happens through a net with fine mesh veins, which accumulate in larger collecting veins (mostly abdominal) and passes through the lymph nodes then emptied into the blood stream.
The “Dumping Station” is located on the large veins at the bottom of the throat. If the lymphatic system fails to perform its job the protein rich tissue fluid will accumulate and create edema in the body. Whereas legs and arms are especially vulnerable.

Lymphedema is divided into two categories: primary lymphedema can be hereditary and comes of congenital defects of the lymphatic system. This type can affect the entire body and usually generates the most edema. Secondary Lymphedema can develop as a result of injury associated with surgery, trauma, or via mosquito bites (parasites). It is often a byproduct of the removal of lymph nodes from cancer. This usually only affects an arm or a leg.

Stadier av lymfødem
Stadier av lymfødem

Unfortunately most doctors have limited knowledge about this disease and patients can therefore go years without a proper diagnosis. Many doctors wrongly prescribe diuretics for edema, which might work on normal edema’s. However it  can regrettably cause lymphedema to get even worse. The diuretic medications removed some of the water, but the proteins and impurities are left behind and causes a block in the lymph vessels. Therefore please not that the edema does not purely consist of water, but also of proteins and ‘impurities’. Many mistakenly believes they have simply put on weight. It doesn’t matter how hard you try to loose weight, nothing happens, which leaves many puzzled and confused. This is because you can not exercise away an edema. Lymphedema can be very hard to treat, and many who are inflicted with lymphedema also suffers with lipedema. You can read more about lipedema HERE.

Symptoms: The most persistent symptom is unrelenting swelling.
This swelling is greater than the usual swollen legs and arms that many can experience. You can experience a painful heat, heaviness, pressure, tingling and jolts on pain; especially in the feet when you walk or even stand for too long. The consistency in both subcutaneous tissue and the epidermis can change. The swelling itself can also change over the course of one day. Although it might be -ok- in the morning, it might have become painfully swollen by nighttime. There might also be days where you feel rather fine, and other days where the pain is almost unbearable. Areas with heavy swelling might also become inelastic and thick and even cracks might appear.
Complications : “Fibrosing” of skin and subcutaneous tissue. The skin becomes stiff, inelastic and prone to injury. Inflammations may also occur and the  Immune system deteriorates. In some cases, especially at a secondary lymphedema, an inflammation called Erysipelas might occur as well.

Erysipelas
Erysipelas leg

Advice:  Watch your skin carefully. Avoid excessive heat/cold (avoid saunas). Avoid insect bites in the areas affected. Do not use acupuncture or injections where edema occurs. Try your best to avoid injuries. Wear gloves in the cold and always use comfortable footwear, do not walks barefoot as much as possible. Always clean wounds and cuts to prevent further infections. If you experience a bacterial infection then consult a physician as quickly as possible. Try to avoid salt, sugar, lactose and wheat flour in your diet. Instead eat plenty of vegetables and other plant based food, try to keep your diet as clean as possible. Keep the leg or arm most heavily inflected with edema as high up as possible. Stay away from hard massages on the edema. Avoid measuring blood pressure on the arm with the most edema. Try to wear your compression stockings/trousers at all times, especially during long walks and exercise. The compression will stop the edema from growing, which it will when blood circulation and heat rises in your body. Training with compression is an absolute must as it will keep the tissue fluids out of the tissue and further on through the lymphatic system. Your compression garments should be replaced every 2-3 months.

Patients with lymphedema in Norway are eligible for physiotherapy by a physiotherapist with special training in lymphedema. Unfortunately these physicians are often hard to come by, and you might have to travel far for treatment. The physiotherapist will send in a request for coverage when it comes to treatment equipment such as compression garments, bandages and pulsators (This will vary between different dountries, consult with your local physician and find out what they can offer you).Jobst elcarex_lyph1211

The most important part of the treatment is consistent use of the compression garments. This means the special tailored compression garments for legs and arms, regular tights will not suffice. You should wear the garments as much as possible throughout the day. Lymphatic massages done by a physiotherapist is also important. The massage consists of light strokes that will open the flow in the neck and throat region and by the collar bones. The left side is the most important as this is where the lymphatic fluid is emptied into the bloodstream. Thereafter the stomach will be massaged, which is where the bigger lymph vessels are located. Although it might be slightly unconformable, as the physiotherapist have to push quite deep for best effect, it is worth doing in the long run. The physiotherapist will also guide you through some breathing exercises to further aid with the flow.

 

 

 

 

Kvinne ligger i pulsatorbehandling for lymfødem
Pulsator for legs

The pulsator is a piece of equipment used to for lymphatic treatment. The pulsator will be places on an arm, leg or the entire lower body. Air will flow through the apparatus and a vacuum will be created. This will give your body a natural massage which squeezes fluid out of the tissue and speeds up the lymphs. Ask your physician if you are eligible to get one for free.
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Bandaging: You have to put on several layers compression bandages to a a decent amount of liquid out of the tissue. The usual layers are: firstly, an inner stocking, secondly, padding and thirdly several layers of bandages. An intensive treatment consists of bandaging three times a week, then wearing these bandages constantly til’ the next shift. It can be rather hot and uncomfortable, but is one of the best ways to quickly reduce edema. Also remember to do your circulatory, breathing and drainage exercises are important. To get the best result you have to take time to perform these exercises every day, also don’t forget to use the pulsator and to stay away from salty food.

Although it is demanding and time consuming, this treatment is the best method to reduce the size of the edema’s. You have to be vigorous with your treatment, because if you skip it one day, then the edema might blossom back to its full size again. This treatment is the same for primary and secondary lymphedema. It is also important to massage the lymph vessels and ‘clearing points’ on the next and throat and to help open and stimulate the lymphatic system. This video has been a great help to me:

If you do you have lymphedema I advise you to find and contact your local lymphedema support group. They could give you valuable advice and tips on how to deal with the disease as well as being a moral support system.

Thanks to joining my support group in Norway I was able to learn about and go to an intensive treatment at Meråker Kurbad. For the next couple of posts on this topic I will divulge into what I experience and learn from the treatment provided here. So if you are interested in learning more about the disease and my progress, I urge you to read on.

Lastly: Here is the first video in a great series of videos on the topics:

 

the other videos are easy to find HERE  ( klick the link)  

 

 

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