On 10/8/2014 okiebug said: Hi, Jillie, I'm so sorry to hear you are suffering from lymphedema. I have had it in my lower legs since 2007. It is an awful condition, but with the right therapy can be controlled. At my worst, my ankles were 25" around and my skin was stretched so tight it was splitting. I needed double knee replacement and the surgeon wouldn't do the surgery until the fluid was gone. My Primary Care dr didn't know how to treat it, but my ortho surgeon sent me to a lymphedema physical therapist. I had got to the point like you I was in a wheelchair, but the proper therapy and lymphedema massage got my legs down to normal. I had to go to therapy daily for them to massage and wrap my legs. I now wear strong compression hose every day.
You need to find another doc - I've been "fired" as a patient by doctors as well. It's devastating at first, but in the long run if they do that to you, they're not going to help you anyway.
Did you go to a lymphedema therapist to learn to wrap your legs? There's a very specific way of wrapping to force the fluid up and into your lymph glands so it can be taken out of our body. If you or your husband are wrapping wrong that could actually make it worse. The massage for lymphedema is also very different than regular massage - again, the wrong massage will make it worse.
A great resource I've found is the Academy of Lymphatic Studies, acols.com. There is a tremendous amount of information on that site. They also have a list of certified lymphedema therapists in the country so if you don't have one, hopefully there's one within your area. There's also a blog about treating lymphedema written by Joachim Zuther at www.lymphedemablog.com/ that I have found tremendously helpful.
I understand how much you're suffering and how hopeless you feel, but please know there's help for you. It's not easy, but it is possible. My heart goes out to you.
Edited to correct spelling
I also had lymphedema in my legs and ankles and feet, this is years after lots of radiation treatment and chemo for cancer -- after effects. Anyhow, I did what several others here have mentioned, got a referral to a physical therapist who specializes in lymphedema. I went in every other day and she wrapped my legs with special elastic bandages and my husband watched. He re-wrapped on days we didn't see the therapist. It worked like a charm and I then started using strong compression hose. Now my legs are looking slim again and normal. It's a miracle as far as I'm concerned.
Here's what I'd recommend you do:
Do an online search for hospitals in your area who also have PT places near them. Look online at the PT places and you may have to call some of them and ask if they have someone who specializes in lymphedema. If they do, get a referral from your doctor, schedule yourself at the PT place and you're all set. They'll do the rest. You may have buy the elastic wrapping stuff, but they'll tell you exactly what to get and a nearby place you can get it at. They'll probably also recommend you get some bicycle shorts to wear to put compression on your upper legs/torso.
This is totally a fixable thing. To think where I came from with my ballooned out legs to where I am now totally slim and normal looking, I'm almost in disbelief. It is doable! Do you have any questions for me? I'm happy to answer anything and help guide you to find the right place to address this. You could have "normal" legs again by the holidays.
Good Luck!!
Oh, and there's a special contraption I found that makes putting on the compression hose as easy as pie. Due to mobility issues I can't put the hose on myself, but this contraption rolls them on with my husband's help.
The best part is I'm totally mobile now. I can walk (with a cane) and get in the car easily.
Keep me posted!!
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