topic Re: Lymphedema in Wellness

Lymphedema

jillie — Wed, 08 Oct 2014 15:59:21 GMT

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.

Re: Lymphedema

FannishMarcia — Wed, 08 Oct 2014 16:27:46 GMT

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!

Re: Lymphedema

goodstuff — Wed, 08 Oct 2014 16:31:31 GMT

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.

Re: Lymphedema

BOYINTX — Wed, 08 Oct 2014 16:37:22 GMT

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

Re: Lymphedema

gazelle77 — Wed, 08 Oct 2014 16:49:43 GMT

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.

Re: Lymphedema

okiebug — Wed, 08 Oct 2014 16:51:04 GMT

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

Re: Lymphedema

okiebug — Wed, 08 Oct 2014 17:00:43 GMT

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.

Re: Lymphedema

qualitygal — Wed, 08 Oct 2014 20:14:37 GMT

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.

Re: Lymphedema

wagirl — Wed, 08 Oct 2014 23:52:23 GMT

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!!!

Re: Lymphedema

violann — Thu, 09 Oct 2014 13:10:21 GMT

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!

Re: Lymphedema

cgfan1 — Thu, 09 Oct 2014 13:36:41 GMT

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!!

Re: Lymphedema

Deb1010again — Thu, 09 Oct 2014 13:51:30 GMT

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!!

Re: Lymphedema

jillie — Thu, 09 Oct 2014 16:23:27 GMT

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!!

Re: Lymphedema

violann — Thu, 09 Oct 2014 18:27:08 GMT

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!

Re: Lymphedema

violann — Thu, 09 Oct 2014 18:35:08 GMT

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!

Re: Lymphedema

qualitygal — Thu, 09 Oct 2014 18:45:21 GMT

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!!

Re: Lymphedema

okiebug — Thu, 09 Oct 2014 19:14:46 GMT

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.