Primary Lymphedema is a horribly debilitating condition. It causes swelling in the extremities, most commonly the arms and/or legs. The swelling is variable. It could be a couple of days a month or every day. It could be seasonally dependent i.e. some people experience more swelling in the summer than in the winter or vice versa. The extent of the limb that is affected is also variable. For example, it could be swelling in the entire left leg or just swelling of the foot. People have mentioned itching in the affected limb (especially the legs) during any type of exercise or even simple walking. Apparently the itching is so severe that they have to immediately scratch it. People have said that if they are driving a car, they actually have to pull over and scratch because the itching is so bad. After the area is scratched it forms whelps and is hot to the touch. People have mentioned that the swelling is worse in the afternoon than it is in the morning. People have also mentioned that sitting or standing for long periods of time makes the swelling worse. Apparently raising the affected limb above the heart, propping the limb up, or lying down have been mentioned to not help with the swelling. Primary Lymphedema is extremely uncomfortable condition. It is difficult to find shoes and clothing to accommodate the fluctuations in swelling. It is difficult to find therapeutic options that really help to bring down and keep down the swelling. If you are a Primary Lymphedema sufferer, are you experiencing any of the symptoms above, and do you have other symptoms?
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