Lymphedema - new support group: Let's connect

Thanks for sharing, John.
I have been struggling with (& cursing to!) my new compression stocking (foot to thigh) for the past few days. “Donning” and “doffing” have become Olympic activities for me and it is very frustrating. I asked my therapist about OTC products for a break but she sticks to the plan.
A pump is in this plan as well; she tells me it’s to be used every day and I laughed. Do you use one? Do you do the lymphatic massages? I will soon be getting my full leg nighttime compression stocking. How lucky can a girl get?!

To shirls-
Good luck on Wednesday. It sounds like you are just a few weeks behind me on this lymphedema journey. I really wish that our doctors had asked about symptoms or checked us because my therapist told me that it is not curable and it never gets better. The best case scenario is to manage it and to try to prevent the swelling from worsening. (It could involve the abdomen in addition to my calf and thigh. And there’s also a chance that my other leg could join the club.) I was classified as late stage 1, so I guess I should be grateful that it’s not worse.

I have one of the plug compression massager devices for the legs but I don't use it very often. The compression socks keep the swelling down some and then when I take them off at night my right leg is the only one that is swollen some and is noticeably bigger than my left leg/foot. By the next morning it's only slightly larger than my left foot. I've thought about buying one of the cordless/wireless leg massager compression sleeves because it would be less hassle to strap it on and use it.

blister on leg

Cordless & wireless!?
Good to know. I’ll look it up.
My therapist has recommended a pump and I will likely get it because it will be covered by Medicare and I might use it sometimes, though not as frequently as she recommends.

After 6 surgeries between both legs, I was diagnosed with lymphedema in both legs. It has turned out it is a severe case and I deal with managing it daily. I use a pneumatic machine 1-2X daily for 60 minutes. I tried to get away without using it for a period of time and it flared up in both legs. I had to go back for treatment with my lymphedema therapist to help me get it under control or to make it more manageable. I'm not going to sugar coat it: it is a pain in the ____ and never goes away for me. I'm still trying to make peace with it as I battle other serious medical conditions. But following instructions from my lymphedema therapist has been a positive thing to do. She works with me to find the right compression garnmets to wear. I wish everyone well who is dealing with lymphedema. A support group here is a great idea, thank you.

My advice…. Go to a certified Lymphatic Drainage Massage PROFESSIONAL. These therapists are either OT or PT’s with special training. Insurance will cover this with a diagnoses. Therapy, special garments, bandaging etc are all part of the process. You can’t just hit and miss your treatment…. It’s very specific. I’ve been in therapy over a year and just now can move to the next step which is liposuction. Another year of therapy and hopefully I will be ready for the next step… Lymphatic Bypass and Transplant. As of Jan 2024 Lymphedema supplies are covered by insurance. So go through the process and hopefully, with a lot of hard work you’ll have success.

Thank you!
I am currently getting therapy from a licensed OT under a prescription from my oncologist, based on MY determination. (Another story re lack of follow up for after effects of treatment.) I will be under her care until she thinks I’m ready to be set loose - day & night garments, self massage, pump. She makes it sound like maybe another month. Your year long therapy was a surprise based on my experience. I also don’t think I would be a candidate for surgery, but she has concern that the abdomen could become involved and maybe my other leg. I’m at a late level 1, bordering on 2; maybe you are above that?
Cancer is the gift that keeps on giving.

Yes, my lymphedema was close to a Stage IV. I also go to a Lymphedema MD who directs this journey. If yours is still in the early stages, stick with the treatment plan as uncomfortable as it is, so that it doesn’t progress. My radiation for Stage IV cancer was very intense and damaged the lymph system.

Gosh that sounds encouraging if a bit scary. Don't know if they do it in the UK but I'll take whatever is offered because it's pretty crippling. Add that to COPD and cracked T12 and it's kind of hard to get any exercise.