Lymphodema

Hi I had a Lymphosintigram and it is confirmed that I have primary lymphodema in my right leg. I knew it was definitely Lymphodema but didnt know the cause/source. It is confirmed that I was born with it, but in 2004 I jumped off a stage at a gig and the mild trauma triggered it off. This incident just upset it. At that point I had no idea I had it. My lymphatic system is normal with all the nodes present and all the pathways working properly. It works well but just slower and not as efficient. The consultant said it is like a 2 Lane motorway but coping. She said it is just a little thing which is not perfect, just mild. My pattern of the way it is working has worked well over the years too. Also I am active and slim. It hasn't got worse in 13 years. There is only about 1cm difference in my right leg to my left leg. I don't have to wear compression stockings or do anything. The consultant has discharged me. I have never had cellulitus. My leg has never been red, inflamed, in pain... I have had 2 children, insect bites and my leg hasn't got worse. I just worry what are the chances of getting cellulitus?? This is one thing which really scares me. Any advise would be great. Thanks.

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  • If you contact the Lymphoedema Support Network lymphoedema.org, they have information on cellulitis (on website plus a leaflet). I am primary, below knee & both legs. Mine is more or less no lymph vessels below knees. I have had cellulitis once, many years ago. It was horrid, had me out of action for 2 weeks, but no lasting effects. I remain somewhat obsessed. At that time my GP reckoned it was caused by wearing old, smelly trainers, all day on a very hot day, on a farm, with athletes foot (oh the naivety of youth & actually ignorance). Since then I go to a chiropodist every couple of months. At any sign of broken skin I apply surgical spirit. Also I wipe surgical spirit between toes (still get athletes foot) and around all my toe nails after my shower every morning.Best wishes

  • Hi Bellebert - no-one can give you a definitive answer on the chances of getting cellulitis, but I'd say you rank in the low-chance group. Thankfully, you have your lymph nodes and are a healthy weight and are active. Cellulitis is more prevalent in people with absent/removed lymph nodes, and/or overweight, and/or immunocompromised (my husband got it - he doesn't have lymphoedema, but he had poorly managed diabetes). For people with lymphoedema, when the swelling is moderate to severe, cellulitis is more common as the stagnant lymph fluid is a great place for bacteria to settle and overwhelm the system. If you see that your swelling is increasing, please see a lymphoedema therapist to stop that. Also, if you haven't learned how to do lymph drainage massage (self), it would be a good idea to learn how. The 4 pillars of 'good' lymphoedema management are: skin care (use a moisturiser daily to maintain/improve great skin quality), exercises (you're active), lymph massage (you can learn this - this is to help the lymph move that is struggling to move), and compression (this is important if your fluid levels fluctuate. Even though your fluid is constant now, this may change in the future - a lymphoedema therapist can advise you on what to use and when to use it, now or in the future). I hope that you never get cellulitis. If you ever suspect it (feeling ill, high fever, redness/heat/pain in the area), see a doctor ASAP for antibiotics - best if you catch it early to avoid the damage that it can inflict. For self-massage, there are heaps of video's on youtube. I'd recommend you see a therapist to help you tailor the massage to your specific needs.

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