• Lymphedema

    Asked by Ps8285 on Monday, March 25, 2019

    Lymphedema

    I’ve developed what I believe lymphedema in my legs. I’ve had 5 surgeries and radiation twice over 6 years. What treatments are available other than wrapping? I’m starting physical therapy but this is very painful and distressing and I’d like to know all of my options. I’ve heard about laser, etc. but don’t know anything about other options for treatment.

    8 Answers from the Community

    8 answers
    • GregP_WN's Avatar
      GregP_WN

      I'm sorry for your terrible side effects, I haven't had issues with lymphedema, but several on the site have, as soon as some of them see this, they will pass along what they have done about it. We all wish you quick relief.

      28 days ago
    • BoiseB's Avatar
      BoiseB

      What has your Dr. suggested. My Dr. prescribed Lasix as well as well as wrapping. No physical therapy because I was doing physical therapy for injuries I had from an accident. This has worked well for me for six years. I also sleep with my feet elevated. I also elevate my feet when sitting at my computer desk.

      27 days ago
    • Ivy's Avatar
      Ivy (Best Answer!)

      Not being a medical professional but dealing with this now for 6 years, I recommend getting a prescription from your doctor for lymphedema therapy. (That way insurance and/or medicare will pay for a large portion of the cost.) I had 6 therapy sessions. Do be sure to go to a certified lymphedema therapist, not just a general therapist, if one is near enough. The hospitals with good cancer treatment programs usually have such staff. I was told that one has a choice: you can wear compression stockings (mine are knee highs) every day and do special lymph massage to manage it, or you can choose the wrapping option. (There are also customized sleeves that you might be able to sleep in. Expensive but said to work well.) Those options may not be available for everyone, depending on severity of your lymphedema.

      The therapist that I saw said under no circumstance should I consider any other treatment for venous problems or lymphedema, so please be wary of laser or any other type of "surgical" treatment. This problem is caused for people like us by lymph nodes that are damaged or missing. Cutting off the ability of any other part of the body to function, which is generally what a laser treatment would accomplish, seems really counter-productive.

      I too found that massage is a big headache and don't want to do it every day. I've been able to mostly avoid it successfully by doing all of these things religiously:

      1) Put on compression stockings every morning (I use 20-30 strong compression level as recommended by the therapist). The therapist recommended particular brands that work better and are comfortable enough that you're unlikely to quit using them.) Buy new stockings regularly; as they age they don't work as well. You can wash in a lingerie bag using cold water in the washing machine, but NEVER dry in the dryer even it the directions say you can do so safely.

      2) Sit with lower legs elevated using a recliner whenever you sit down at home--note that many recliners aren't very "high leg," so they don't help as much;

      3) Sleep with lower legs elevated. You can buy special "leg lifter" pillows for this. When you start to get uncomfortable in the middle of the night you can just kick them out of the way and change positions. If you have extra money, some of the adjustable bed frames will lift the legs more comfortably.

      4) If you have access to a pool, you will find that standing or swimming in water about 4 feet deep is helpful. The pressure of the water pushes the lymph fluid up higher, which is what the massage is for as well.

      None of the options are cheap, in time or in money.

      Even with all of this, sometimes I need to fall back on massage, especially if I've been traveling or on my feet for many hours.

      I hope this is helpful and would welcome additional suggestions from others. Good luck to you!

      27 days ago
    • Ps8285's Avatar
      Ps8285

      Thanks for the comprehensive answer. I’m going to start pt tomorrow. I’ll report back on how it goes. They are certified in lymphedema pt so hopefully this will help. My primary gave me lasix first and it didn’t help at all. I have yet to get compression stockings. Once I find out what to get I guess I’ll go that route. I hear that the ones they prescribe for you after treatment are very expensive. We’ll see. It’s been extremely frustrating and painful

      27 days ago
    • MissWiz's Avatar
      MissWiz

      Unfortunately there is no easy answer. Make sure you see a certified lymphedema PT, they do a special form of massage, and teach breathing exercises and self massage to help lymphatic fluid move and drain from your system. Elevating your legs, wrappings, compression garments, and even pneumatic compression suits that are specially measured just for you( the LE therapist should be able to hook you up, they usually have connections). They can be expensive and not all insurances cover the cost. Lasix does not work for LE, you need to stay hydrated(unless there's another medical issue not to) to help thin the lymphatic fluid.

      24 days ago
    • Ps8285's Avatar
      Ps8285

      Thanks MissWiz. I’ve noticed that docs know very little about this. I just read that staying hydrated helps. You are correct. Lasix would be counterproductive. And when I think about it...while I was taking it the condition worsened. I found an excellent video on you tube that describes the breathing exercises and self massage so I’m trying to get it all figured out. Now I’m trying to decide on compression socks that I want to actually wear. It’s quite confusing. The wrapping is going good so far. It’s annoying but I’m seeing results. I’m contemplating that compression suit. My partner had breast cancer and slight lymphedema so we could both use it. Thanks so much for all the great info

      24 days ago
    • Ps8285's Avatar
      Ps8285

      I went for a total of 12 treatments (wrapping and massage) and it has greatly improved. The pool has helped a lot also. Doe anyone know if Medicare covers the expensive compression stockings? Finding comfortable ones that don’t leave a ridge has been a challenge for me. Be sure to use a therapist who is trained and certified in lymphedema. I finally had to demand one particular person. It made all the difference. So I’m hoping to be able to manage it without any additional treatment or big flare ups. Once again a shout out to Ivy and MissWiz. You guys helped so much. One more thing..I’m still getting a nerve pain intermittently in the same ankle where the flare up began. Has anyone had luck with anything to treat that?

      3 days ago
    • MissWiz's Avatar
      MissWiz

      Ps8285 The nerve pain for me has been in my toes, which just started a few months ago, and is especially bad in my right foot. I'm on my feet all night during my 12 hr shifts. I have just started taking Gabapentin (Neurontin). I am only taking 100mgs and will increase if needed. I hate taking medications but couldn't take the pain anymore. It seems to be helping. Only problem is it makes me sleepy so can only take it at bedtime. Yoga has also helped with my joint pain and swelling.

      2 days ago

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