Lymphedema and now Cellulitis
I'm new to this disease, the calf on my right leg has been swollen for about 3 months but my doctor wasn't concerned until I broke out with cellulitis on my ankle which she then treated with an antibiotic. I also have Idiopathic peripheral neuropathy for the past 20 years in my feet and legs. She said the swelling was probably due to the neuropathy but it wasn't. I'm trying to find out any information on it through support from others. I belong to a support group on neuropathy where I have been helped by others with neuropathy, so much more than any doctor. I am grateful for the computer because without it I would probably be on all kinds of prescriptions which the doctors hand out so freely or maybe dead by now. I'm seeing a Certified Lymphedema Therapist (CLT) within the next couple of weeks, and hope it will help me to take care of this issue. I know we're supposed to keep the skin moisturized and wonder if anyone knows of lotion that will help. Thanks
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I am a 21 year survivor of triple negative breast cancer...so I am blessed. I have always had lymphedema in the affected arm. Over the past three years I have had recurring cellulitis in that arm, causing flu like symptoms, chills, fever, redness, heat and swelling in the arm. My doctor has prescribed antibiotics, which have always solved the problem. However, he doesn't want to continue with this, which I understand, due to the overuse of antibiotics. Has anyone else experienced anything like this, and, if so, any suggestions?
@fisch
So great to hear your a 21 year cancer survivor.
Can I ask a couple follow up questions that might help others give you some advice.
Is your primary provider treating the cellulitis or are you seeing a dermatologist or an infectious disease specialist?
What do you do to treat lymphedema? Do you do lymphatic massage or see a physical therapist to help with the lymphedema?
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1 ReactionI have lymphedema from my tongue and lymph node cancer. I use lymphatic pump made by a company called Tactile Medical. see them at Tactilemedical.com . The machine was prescribed by my doctor. It works great. I see reviews by breast cancer patients who have the same lymphedema issues you describe. My insurance paid for the machine. It uses light air pressure to massage the affected area.
@fisch, I added your post to the Breast Cancer support group as well. I'm tagging @jane88c @rosy33 @cindylb who have discussed cellulitis in relation to breast cancer and/or lymphedema.
See these related discussions: https://connect.mayoclinic.org/search/discussions/
What is your doctor suggesting instead of antibiotics?
I have primary lymphedema in both legs (knees down) and have been fighting recurrent cellulitis infections in my left leg since December 2024. Hospitalized 6 times since December for IV antibiotics, with one stay ending with a PICC line for antibiotics at home for another 10 days after being discharged. I am currently fighting another infection (antibiotic shots and oral antibiotics). I wear compression garments each day, keep my leg elevated as much as possible through the day while at work, and use a compression pump each night from waist down. All I’ve been told is that I need to lose weight, use compression, elevate, exercise, and the infections wouldn’t be as frequent. I am overweight and through changing my diet and walking more, I have lost 20 lbs since February but that can’t be the only reason this keep coming back. Anyone else been through anything similar?
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3 ReactionsI have met several people with primary lymphedema through a zoom group sponsored by Cancer Lifeline. I do not know if Mayo has a similar support group. You may learn how others deal with their cellulitis episodes
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1 ReactionThis is exactly what I'm going through. I'm too far gone for lymphedema treatment. I need surgery. Cellulitis keeps coming back, antibiotics do not work even with mild case. I'm currently in Urgent care & told there is nothing they can do for me. I'm on several prescription medications . I'm seeing a vascular surgeon. I refuse to just go home and live with the pain because there's nothing can be done for me.
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1 ReactionI’m so sorry you’re going through this as well. I pray you find relief from the pain and infections.
I have been diagnosed with Chronic Venous Insufficiency by a vascular surgeon in 2018 after two horrendous bouts of cellulitis and huge venous ulcers that took over 8 weeks to heal. I had five separate procedures on both legs to seal damaged and collapsed veins and I wear medical grade compression stockings every day. Thankfully I have not had a recurrence but I have stepped up my walking routine and that has helped also. Exercise is really critical to keep good circulation in your lower extremities. Physical therapy can also help you develop a good exercise plan that fits your current abilities. Good luck and best wishes for healing. I know how miserable it can be.
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3 ReactionsWelcome, @ellemc2252. I moved your post to this existing discussion:
- Lymphedema and now Cellulitis https://connect.mayoclinic.org/discussion/lymphedemacellulitis/
I did this so you can read previous posts and connect with members like @rosy33 @cindylb @johnbishop and others.
You might also be interested in this related discussion:
- Lymphedema in legs https://connect.mayoclinic.org/discussion/lymphedema-in-legs/
Have they managed to get the infection under control? Sepsis is tough.
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