Wellness

[jillie]

Does anyone here suffer with lymphedema and/or lipodema? I was diagnosed last year with it. I seem to be getting nowhere with getting it under control. I have it in my legs and they have swelled soooooo much it is hard for me to get around let alone get out of the house. To top it off my family Doctor is dropping me as a patient since I am immobile and cannot get into his office. I am at my wits end. This is so depressing. It would be nice to know someone that also suffers with this condition for ideas and moral support. My poor husband has his hands full with me. He wraps my legs and feet (cannot even get shoes on my feet) everyday for me but there is too much swelling in the upper thigh and hip area. I feel defeated and cry every day what a baby I am. Thanks for letting me vent here.

[FannishMarcia]

Hi Jillie,

Although I do not have lymphedema, I am a massage therapist who has some beginning training in this aliment. You are not alone! Here are a couple of oline support groups.

Daily Strength

http://community.qvc.com/default.aspx?tabid=73&TypeID=1&catId=25&ThreadId=473501#createreply

http://lymphedema.supportgroups.com/

There are professionals who specialize in the treatment of lymphedema, and perhaps you can find one close to where you live. The support groups have information on those, too.

There is hope!

[goodstuff]

I'm sorry you're having so much trouble. When I worked in a surgeon's office, we sometimes saw patients dealing with lymphedema. It's a challenging problem.

First, it would help you to get in touch with an information/support group. You might check on The Lymphedema Network: http://www.lymphnet.org/

If you Google "lymphedema foundation" or "lymphedema support groups", etc. you will find more information and resources. If you are unable to get out of the house or visit your doctor, do you have a wheelchair? If you have a hospital or medical center in your community, you might check with their patient services or community service office to see if they can direct you to resources in your community. Lymphedema is a common aftereffect of some types of cancer surgery as well as other medical issues, so I am sure there are others in your community who are struggling with this. Many cancer centers offer services and resources for lymphedema patients.

Most of all, don't just sit and be isolated. You need to seek out the right medical professionals and good supportive help to get you pointed in a more positive direction. Please check back with us and let us know how you're doing.

[BOYINTX]

Bless you. I have never heard of this. I wonder if you could afford a massage therapist to come in a few days a week. It would bring a nice visit, and give your husband a break.

Sounds like you have a great husband. Keep us updated.

God Bless

[gazelle77]

Have not experienced it other than slight swelling in my ankles which I use compression knee highs for which helps. Also the Lessman circulation formula sold on HSN I take everyday. Can you walk and move some? I would think just simple walking would help the circulation and blood flow....

Do not let that doctor that dropped you make you feel alone. Reach out and get the help and companionship from those that understand what you are feeling and going through. Blessings to you.

[okiebug]

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

[okiebug]

Jillie, I wanted to add that lymphedema is different than vascular deficiency or poor circulation where you get swelling in your ankles. It involves the lymph system not the blood vessels. The lymph system can be compromised where there's trauma to the lymph glands so they no longer function to pump the fluid in the system up so it can be eliminated by your body.

[qualitygal]

Just to add my dad had this. There has been discussions on the boards before on this, maybe you can research that. The above info is good too. Bless your husband's heart on this, I know it's a lot of work, and bless you too. I know it's no fun to go through. Do elevate legs it helps, and the compression pumps, and stockings. You may be able to get a (visiting nurse) to come into your home and wrap your legs. Dad's legs would break out in some sores, but they did use a cream to soften them after some time, to help. In time his did get better, much more manageable. I'm hoping for the best for you two. Dad's did get better, more tolerable and easier to work with.

[wagirl]

jillie--I really like and agree with what okie has posted. I had lympho in my left arm due to over exertion after a mastectomy that took lymph nodes out due to cancer. My insurance covered a lymphodema physical therapist that did wonders for me. It is very gentle massage and home exercises and also I wear a compression glove and sleeve when needed. Please call the local resources for this and see what is available to you. It's not just getting up and moving around that you need. but you have to take that first step and reach out for help. And that step can be huge, I know, but getting you back on track is the most important thing. Please give hubby a squeeze for me--he sounds like a great guy!!!

[violann]

PLEASE don't give up!!!!! You are a bright, funny, valuable woman! Don't let yourself be immobilized- if you are able to take one step, make that one step into two steps. If you are not eating well, eat EXTRA well. Don't let yourself become a victim- be a vanquisher! We're all on YOUR SIDE!