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Occasional Contributor
Posts: 16
Registered: ‎10-24-2011

Yes I have both in my legs and feet. If you can get to facebook there are many support groups with tons of info . They are the sweetest girls over there so helpful and caring, I know how you suffer and I will pray for you. There is Dr. Herbst in Arizona that specializes in this disorder. I am also on facebook if you want to chat more!!

Trusted Contributor
Posts: 2,620
Registered: ‎05-28-2013
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!!

Occasional Contributor
Posts: 16
Registered: ‎06-10-2010

I want to thank you all for all your kind words and suggestions for me. I do have another question. Were you able to get this problem under control at home or did you have to go to a hospital, nursing home or rehab facility? I was in a rehab facility last year for 10 days. I was told they could get the swelling under control faster than we could at home since there would be round the clock people there to wrap and rewrap my legs a couple of times a day. WELL.... that was a joke. I was there 10 days wrapped once a day and only wrapped 8 times out of the 10 days. Very disappointed in that. We did that well at home on our own.

I am extremely overweight and try to lose weight but with the swelling I get no where. When you gals had this in your legs and had your legs wrapped what did you wear on your feet with my feet wrapped I cannot get shoes or slippers on so I am just in sock feet and my feet hurt.

Well I am off to do some searching on the internet to see what help I can find. With no Dr. now I don't know where to turn but you all have given me a little hope.....THANK YOU so much!!

Honored Contributor
Posts: 8,968
Registered: ‎03-10-2010
jillie, I have just lost almost 90 pounds. If you had asked me when I started if I could do it, I would have become insulted, said "NO", and written you off. Now, having actually done it, I will offer you a suggestion. Don't "try"- just DO IT. JUST FOCUS ON LOSING ONE POUND. you can do that. Anyone can. Aim to eat meals of veggies, low fat protein, and berries, for example, for JUST ONE DAY. You CAN do that. And if you have 110 pounds to lose, as I did, after one perfect day you won't have that 110 pounds to lose. Every time that scale goes down, you will have achieved another milestone. While you're online, take a look at My Fitness Pal. The success stories there will warm your heart. Remember, you can take charge, and you'll be so much farther ahead when you do!
Honored Contributor
Posts: 8,968
Registered: ‎03-10-2010
Want to add, I just did a search for "lymphedema" at the My Fitness Pal website. If you do the same search I hope you find some inspiration. I sure did!
Honored Contributor
Posts: 20,603
Registered: ‎10-04-2010

Dad's case, he did not have to go into a hospital to get over it. Work at it, and you can do it at home. (He did). Be consistent, keep at it and you can do it!!

Super Contributor
Posts: 2,007
Registered: ‎04-05-2010
On 10/9/2014 jillie said:

I want to thank you all for all your kind words and suggestions for me. I do have another question. Were you able to get this problem under control at home or did you have to go to a hospital, nursing home or rehab facility? I was in a rehab facility last year for 10 days. I was told they could get the swelling under control faster than we could at home since there would be round the clock people there to wrap and rewrap my legs a couple of times a day. WELL.... that was a joke. I was there 10 days wrapped once a day and only wrapped 8 times out of the 10 days. Very disappointed in that. We did that well at home on our own.

I am extremely overweight and try to lose weight but with the swelling I get no where. When you gals had this in your legs and had your legs wrapped what did you wear on your feet with my feet wrapped I cannot get shoes or slippers on so I am just in sock feet and my feet hurt.

Well I am off to do some searching on the internet to see what help I can find. With no Dr. now I don't know where to turn but you all have given me a little hope.....THANK YOU so much!!

jillie, your feet are so swollen right now the soles are rounded and the bones in your feet are pushed out of place. The wraps add a couple of inches also. The therapists gave me some sandals with rubber soles and Velcro straps that I used during the wrapping. You might be able to find something similar on one of the lymphedema websites.