Can lymphedema spread from your legs to your abdomen? Can it spread to your arms? This question has been asked on every online support group I am in, and it has been asked many times. From the life experience of those of us who have experienced this, we would have to answer with a resounding yes!
I am putting a disclaimer on this article only because I am not a doctor and neither are the lymphedema patients who have asked this question on the various list to which I am a member. We are only people attempting to understand what in the world is going on with our bodies and attempting to answer a question that the medical world is either silent about or oblivious to.
What I will share is based on my own experiencem study and information passed on to me by a doctor I went to who specializes in treating lymphedema.
Primary lymphedema patients are always at risk for lymphedema to present in unaffected limbs. This is because there is already a damaged lymphatic system in place at birth. Whether this occurs from an in-utero problem or is genetically based the possibility is there.
A clear example of this are my own arms. I was born with bi-lateral lymphedema of the legs. As a teenager, I began to have lymphedema in my right hand. Last year as a result of months of IV and piclines antibiotics in my left arm, it now swells. This year after the insertion of a port a cath in my chest, it seems I am now having “bloating” of the abdomen that I have never had. Other causes for primary and secondary lymphedma patients to experience new swelling in unaffected areas include infections, IV therapy in the arms, fluid overload of the lymphatics in existing lymphedema areas causing the fluid to “backup” (i.e. from legs to abdomen), further damage to existing lymphatics due to fibrosis and even an injury in an unaffected area.
I have found that many of the warning signs of lymphedema will also apply to lymphedema that is starting to spread to an uneffected limb. For example, if you arm is unaffected and it suddenly starts transient swelling, has unexplained achiness and/or pain, this could be a warning sign for you.
For the abdomen, the answer is not so simple. If you have sudden swelling of the abdomen with no change in your dietary routine and the swelling is firm, you should suspect lymphedema. Abdominal fat (overweight from dietary) is much much softer than fluid accumulation due to edema.
If you suspect this has occurred with you, you should immediately discuss the problem with your therapis and doctor and begin the appropriate treatment.
The specific treatment will sole depend on you and your personal situation.
You may just need additional sessions of MLD/CDT, or you may need to change the strength of the compression garment you are wearing, or adjust how you are bandaging the limb. Your therapist will be able to help on this.
In this situation, I would urge you to have your doctor do testing to see if there is an underlying problem that could be causing the additional swelling. This is critical as other medical conditions such as congestive heart failure or even a blood clot will cause acute swelling or edema
Many lymphedema patients express frustration when their doctor suggests such testing, but I can not say strongly enough that you can not just assume that any new and/or sudden swelling is due to your lymphedema. You simply must work with your doctor to help rule out other possible medical conditions.