Q: I have secondary lymphedema in both legs. As long as I am active I don't experience much discomfort, but sitting for more than 20 minutes or standing in place for that long is extremely uncomfortable. Elevating my legs (with compression stockings on) when sitting doesn't help. Is this an expected part of living with my condition, or are there some remedies I don't know about?
A: Interestingly enough, each patient with lymphedema responds differently. We don't have any standardization of treatment at this point. Of course, in your case it depends on the severity and duration of the lymphedema.
In compression therapy we distinguish between resting pressure and working pressure. Resting pressure is applied externally when the muscle is inactive and relaxed. Working pressure occurs internally by active muscle "pumping" against resistance that is created either through walking or by short stretch non-elastic bandages.
In other words, when you rest, it is important to remove your elastic stocking since this will create greater resting pressure. During movement of the limb the muscle works against the resistance of the short stretch bandages and produces a working pressure. The more in-elastic the bandages, the greater the potential working pressure and greater reduction. So, in your case, I would remove your stockings while elevating. Also, your garment may not fit properly or perhaps is bunching behind the knee. If this is the case, a Circaid legging and boot may be beneficial since it is non-elastic.
Q: I have primary lymphedema of the right leg, I treat it with Moduret and the use of a compression pump called Lymphapress. I started using the pump in 1990. By 1993, I had reduced the swelling enough that I was able to use the middle setting on the appliance. In August of 1993, I had the most severe infection I had ever had. After the infection was over and I was able to use the pump again I found that I was unable to use the middle setting on the appliance. This has remained the case. Could the infection have caused irreversible tissue change that has added to the thickness of the leg? I ski and have had more trouble with the fit of my boot since that time.
A: There is ongoing concern about recurrent infections. Each infection damages remaining lymphatics, causing more swelling and decreasing the lymphatic flow. When using the pump, it is very important to use the appropriate, safe pressures prescribed by your clinician; do not spend more than two hours on the pump at a time. Unfortunately, we have seen many patients with increased congestion in the groin/armpit, as well as complications much like your infection as a result of misuse of the equipment. Indeed, this could have caused irreversible lymphedema. My suggestion would be to discontinue the pump and find a lymphedema practitioner who not only can treat you but will guide you in self-care with manual lymphatic drainage, bandaging, and special exercises which, hopefully, will improve your leg.
Q: At my son's 6-month check-up, lymphedema was mentioned as a cause of his swollen feet which were this way at birth. How is this diagnosed and what are the treatments for this?
A: I was both pleased and saddened to hear that your son was diagnosed with lymphedema; saddened because it is not an easy condition to live with, and pleased because he was actually diagnosed. At this point there is still little knowledge within the medical community about lymphedema. Too often, this leaves parents with no place to go.
We now have some sophisticated diagnostic studies which we can perform to visualize the lymphatics a nd locate the obstruction. A variety of institutions in the country are providing these and are able to give us some excellent views which can guide your son's treatment program. We now are actively following the European techniques with manual lymphatic drainage, bandaging, and exercise.
In your case, I would encourage you to participate in your child's treatment program and begin this as soon as possible to prevent the condition from worsening, since if left untreated or undertreated, the lymphedema can worsen. We have received an increase of calls from parents like yourself and I highly recommend that you look into finding a PenPal through the NLN. Many parents find a great deal of support from communicating with other parents of children with lymphedema. Please call or e-mail the NLN office for more information.
Q: I am a 58 year old over-the-road tractor driver (3000 miles per week) with 25 years of driving under my belt. I am in a sitting position at all times. My doctor says I have "pedal edema" and has given me a diuretic to take 3 times a week plus elastic stockings to wear. My question is: (1) what exercises can I do, (2) what kind of diet should I go on, and (3) are there any type of shoes I could wear for proper cushioning? It seems the bottom of my feet hurt and my instep has pain. I also have an arthritic knee that needs to be replaced (I take medication as needed for this condition). Will there be any side effects from these two drugs or will one counteract with the other?
A: Regarding exercises: there are exercises for the management of lymphedema. The Casley-Smiths, from Australia, have a very good exercise program (write to: Casley-Smith, Lymphoedema Association of Australia, University of Adelaide, S.A. 5005, Australia), and Guenter Klose from Lymphedema Services has an excellent exercise video available for purchase (call 1-800-882-9498). Be sure not to do any exercises for the lymphedema that exacerbate your knee pain. Either discontinue the exercise or do it within pain-free range. Also, a diet low in salt to decrease water retention and well-balanced for nutritional support is recommended for lymphedema patients.
It could be that your foot pain is a result of your shoes being too tight due to the swelling. You may have to purchase wider shoes, or a half-size larger, or try lacing your shoelaces every other hole. If the pain persists, you may need to consult with a podiatrist who is familiar with lymphema.
As for your questions regarding drug interaction: I would recommend you contact your pharmacist or medical doctor since this is their area of expertise.
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