Lymphedema in all areas?

[pinkbear]

I have lymphedema in most areas of my body: both legs, both arms & hands, trunk or torso, back and chest. I've been told my my lymphedema therapists that I am a severe case.

Does anyone else have lymphedema in more than just extemities?

If so, did the therapy help you get back to your "normal" size?

I just want to get back into my clothes and stop having such a hard time breathing with every little thing I do.

Still learning...
:confused:

[delidiva]

i'm also still learning i have lymphadema in my legs groin and abdomen i did the intensives twice for 4 weeks wrapping 23 hours a day it wasn't helping that well so now i got a lympha press pump it has helped my abdomen and groin better than the legs but slowly but surely i think i will have success i can actually wear a pair of jeans now not my smaller size but at least its jeans:)perseverance is the key for us good luck to you

[pinkbear]

Can you tell me more about the pump you are using? I'm having good success with my legs but not my abdomen yet. I've been in the intense therapy for 5 weeks now. I will continue for many more.

[delidiva]

my pump is the lymphapress, go on the web site its veryinteresting and informative you can actually take a virtual. you have to follow certain protocol to be eliglible ,i think you need to have gone to therapy and learn self massage first then you need 2 intensives then if you don't have alot of results but some ,the insurance companies will ok the pump for you my therapist is the greatest it took 2 years to get the pump but she made sure she documented everthing i did to help myself and when i had not much success but some and then it moved to my abdomen and groin she said i definitely needed this to progress and not get worse .its all about the $$$ with the ins companies the more cancer survivors ther are the more people are going to have this nasty condition but we r alive and well otherwise so we r survivors and rule!!! keep your chin up and persevere i'm not saying it will get easier but it could for you and maybe all ,of us research is being done every day!! do you belong to a support group? it helps to see and talk to others with this condition and learn from their experiences what works for some may not help all but every little tidbit can be tried and maybe work, keep the faith!!!:) delidiva

[pinkbear]

thanks for the info. I'm having good results with the intensive in my legs but not my abdomen yet. I have primary lyphedema that has gone untreated for many years. ( due to misdiagnosis) having all of this fluid in my torso makes it hard to breathe. I'll check out the website.

[renita]

OH YES! I have lymphedema in both arms, both legs, lower stomach(mostly on right side), feet, back (a little), some times my hands. Some days are better than others. I was diagnosed back in 2005. I only wear compression stockings up to my knees. My arms are the worst for pain, but I live with it all. I massage every day and that seems to help, especially my lower stomach. I notice that when I eat sugar, it seems to make my stomach worse.? Don't know what that's about. Anyway, massage really does leave a good result. I do it myself, what I can reach. I can feel things drain when I massage. I know it's working.

[pinkbear]

Renita,

Thanks for the info. Finally someone who is like me! I'm still in the intensive therapy. I'm beginning to do more massage at home over the weekends. I really need this stuff to move out of my torso. Sounds like you understand that one!

My arms are very painful much of the timel. I get pain in my shoulders and collar bone the day after therapy. Seems I feel just a bit achey and tired the day after.

I can't wait to graduate into compression garments. Mine will likely be one piece like hose.

I'll pay attention to my sugar intake vs. stomache issues. You might be right about that!

If you come up with more tips, please share.

[annod40]

I have lymphedema as a result of Cancer Surgery. I have a very good lymphedema doctor but he is hard to contact. there are limited amounts of Lymphedema doctors in my hmo. I have lymphedema in my leg. i believe it is on my left side but i don't seem to be able to get in to prove this fact. I am so disappointed that i dont know if there is any point in having it diagnosed there still is no cure, some days it feels pretty hopeless and some days it feel not so hopeless.

My Lyphedema doctor says it is a spine issue in my upper left side my spine doctor says no it is a Lymphedema issue. so no results just arguments.

I am very sorry that you have this all over i know the pain you are in and the frustration you must be feeling. i will be saying prayers for you and i think that venting your feeling will at least help you to realize that you do matter and it is not your imagination.

[pinkbear]

Annod40,

Thanks for the kind words. Since the therapy IS working very well on my legs, I'm not totally discouraged. I got extremely tired of docs telling me I just needed to loose weight! No one gains 6 lbs in 5 days. or 7 lbs in 7 days. I gained about 30 lbs in 2 months!

One doc even told me that I had to wait to get through menapause then I'd loose the weight. NOT ONE of them considered lyphedema. I had to research myself. I too have 2 wonderful Lymphedema therapists. They have been very helpful.

Hope things get better for you.

:)

[annod40]

Lymphedema can put up to 50 pounds on you depending on how large it has gone. it is not water weight it is fluid that needs to be circulating in your body that is stuck or clogged. so you could loose 35 pounds if the lymphedema would drain? i dont no.

My doctor said the same thing you have to loose weight and i have began to loose weight but i have to continue to state to all my doctors : i weighed 10 pounds less then i did when I got cancer and i was able to walk long distance, shop, work and lead a normal life. since the cancer i can no longer do any of those things.

not that this statement helps any one but me because they doctors dont understand it they tend to just try to push me off. when i talk to my doctors now i take the advice from another support group i am in she said remind you self before you call or talk to the doctor that " YOU MATTER" often when the doctor is as frustrated that they cant treat or cure you they tend to treat you like they want you to go away. i know my primary doc would love it if i just stoped using her. but i cant we have to be in this for the long hall. and the long hall is L O N G.

lymphedema simply..SUCKS. but you dont suck and neither do i you deserve treatment and a cure needs to be found some how we need to help the medical industry realize that because of the cancer there is another disease been created and it is debilitating.

I will step down from my soap box now lol. i am glad i joined this group and i am glad you are trying to keep on keeping on.

[delidiva]

yes lymphadema certainly does suck but we r alive and survivors we will survive this awful disease too you talk about losing weight i am having a problem with that i lose inches but my weight will not budge i am very active on the go at work for 9 hrs a day i don't eat alot of junk food either i weigh more now than ever i used to be a size 6-8 now i'm 14 and not really lovin it any suggestions from anyone??? deli diva

[pinkbear]

Lymphedema sucks? Really? YOU BET IT DOES! I have Fibromyalgia and it doesn't suck as bad as Lymphedema.

I don't have low self esteem thank goodness. I have a very loving understanding husband and many wonderful friends.

the weight thing and shortness of breath are my biggest complaints. I too am usually a size 8 and a 4-6 in dresses. For the first time in my life, I'm shopping in the PLUS sizes. The last pair of pants I bought were 16! All my tops used to be small- medium. Now they are large-XL. Now THAT SUCKS!

I too have lost inches but no weight yet. Please don't tell me I'm not going to be able to wear my clothes again....

:(

[delidiva]

I am so glad to hear you have good self esteem its hard some days i have my own private pity parties every so often it helps and i too have a wonderful husband thanks to God for that i don't know if we will ever be able to wear regular size clothes again but i am still positive about it and still trying everything possible don't give up the hope you have it will happen!!! i'm having a bad right leg day today and i don't know why maybe i'll have a cocktail !!! :) i think maybe the change in weather might be the culprit but i will massage longer and take a cooler shower the things we have to think of its just crazy i really do miss my hot, turn your skin red showers and the long calgon take me away baths but no can do anymore keep the spirits high blessings to you deli diva

[pinkbear]

Delideva,

Oh do I miss those long bubble baths. I didn't take one all winter. If fact, for the first time in my life, I was hot most of the winter. I'm usually very cold all the time. I think the increase in blood pressure made me one hot chickie! ;)

I hear you about the hot showers too! At least the weather is getting warmer and hot showers won't be missed for a while.

Went shopping last night and bought some spandex exercise shorts. ( the kind bike riders wear) They're helping keep the wraps on my thighs. If it works well, it will give me a bit more freedom to go places and do things without my thigh wraps falling down constantly.

I had a pity party day yesterday. I realized I'm in my 6th week of treatment and not ONE POUND LIGHTER! I've lost inches, my skin is more pliable and I'm usuing the bathroon constantly! I know it's working but I'd really like to see some downward movement on the scale and be able to wear all of my favorite clothes.

Today is a better day. :cool:

thanks for being in touch,

[annod40]

is it Secondary lymphedema or primary?

I am sorry that you have all of this. it is not easy to loose weight when you have lymphedema a lot of the weight is the lymph fluid even if you are also heavy like me.

it is okay to have a pity party once in while life can get pretty frustrating. thank god for support groups like this one and you can know you are not alone.

[delidiva]

i forgot to mention i do have bike shorts but they say compression on the tag i got them at a sporting goods store i had to wear them for a while while sleeping until my nite time garment came in they were a little uncomfortable to say the least ,now they fit me better i have to figure a way to lose weight i am trying a few different things so maybe one of them will work i'll keep you posted do you take any supplements? i am bound and determined to lose so when i set my mind i usually have results so pray we find a way!!! so now i will go have my cocktail for the evening and enjoy a moment of bliss :) have a happty weekend and a happy Mothers day to all !!! deli diva

[pinkbear]

I have primary LE. It's gone untreated my entire life until 7 weeks ago. It seems to have gotten worse quickly. Has that happened to you? I feel like aliens have taken over my body!

:eek:

I did get some bike shorts last week. They do help keep my wraps in place longer. Having to wrap thighs every 2 hours is a drag. AT least I can go much longer now.

I do take supplements. None for LE. All for over all good health and a Probiotic for my Fibromyalgia. I try very hard to take good care of myself inside & out.

have a hard day sort of...

[Ann]

For all of us who have been missing those lovely baths, there may be good news. The NLN has just issued updated position papers on Lymphedema Risk Reduction Practices. http://www.lymphnet.org/pdfDocs/nlnriskreduction.pdf

This includes a section titled "Extremes of Temperature." If you keep your soaking to under 15 minutes, it may be OK. Please read the article and decide for yourself.
You probably will want to keep track of how your body reacts, and you might want to ask your therapist.

Ah, there is hope!


Ann

[delidiva]

OMG thank you i will definately research this thank you for the tip i do miss those calgon moments:)

[Ann]

It is always great to be able to share good news!

Ann

[delidiva]

thanx again i just got out of a nice luke warm soak:)

[renita]

I had over 150 lbs. of fluid on my body and still have some. They were treating me for many things. The reason I know it was fluid, was because it came off in the hospital after being there for 1 month. Who loses 150 lbs. in 1 month? I wasn't starving. 2000 Cal./day-American Diabetes Consistent Carbohydrate Diet is what they put me on and wouldn't allow me to drink anything other than water. Once I asked for a Diet Sprite, they really didn't want to give it to me, so I didn't ask again. I figured they knew what they were doing and it paid off -obeying anyway.

[pinkbear]

It's been a while since I've written. I've had my compression garment about a month. We are doing massage therapy at home now as my insurance cut me off for the rest of the year.

I swear I'm getting bigger & bigger except for my lower legs. The fluid has moved from there but it seems to just be moving up. I urinate all the time so one would THINK I would loose weight but not so.

I'm feeling really down. I hate this new body. I want my old body back!!!

[delidiva]

glad to have you back what garment do you have? i am still plodding along with the pump and hose and nighttime gatments today i am very swollen i think because of the heat everuthing from the waist down is very large today not a good day but you take care blessings

[pinkbear]

my garment is a Jobst Elvarex that goes from my toes up to my bra. It's better than wraps but not much. It's hot and make it really hard to breathe when my toro gets full. I have open toes as I HATE to have my toes covered. I'm not even a fan of socks unless my feet are really cold. The CCl level is 3 for most of it and 2 for the upper part I think.

I've been denied a pump by my ins. I'm not giving up on the fight but just tired of fighting for a while. In fact, I'm tired of LE in everyway right now.

I do hope you find relief from swelling. I just got back from traveling. I gained 4 lbs in 7 days from swelling. I did wear my garment + wraps on the plane. I believe that saved me.

Hang in there!

[delidiva]

did you ask about the lymphapress pump? that is probably the one most recognized by the ins co. it has helped me somewhat its been best for the groin and abdomen ican actually wear jeans i could'n 4 months ago its a slow process but i keep on truckin') i don't even want to think about flying any time soon its not worth it peace be yours deli diva

[pinkbear]

I did infact try to get the lymphapress. My ins company said it was not medically necessary. They want me to have skin breaks, sores, cellulitus or worse before approving such an expensive item.

I had to fight them to cover my wraps and garment!

Oh how I would love to wear my jeans again!

do you have a garment? do you wrap at night?

As for flying, all of my family live in other states. It's the only way I can see my parents. Much to far to drive. So, I'll learn to grin & bear it. :)

Have you lost weight as well as inches? Do you have green or other strange colored urine? Odd question I know but my urine is often a light shade of yellow/green. Not just yellow. Again, my dr. not that interested.

It's nice to share with someone who understands.

Thanks so much!
:D

[delidiva]

i wear solaris garments at night they look like big oven mitts and of course its a prescription item and of course expensive about $1200 a leg they will refit i time only and then you have to pay they r very comfortable foor the first 5 or 6 hours after that i just tear them off so i can feel the cool sheets for a bit b4 i start my day :) i am very surprised that your ins won't cover the lymphapress most of them do its the flexitouch that is hard only because it is a newer pump it is so hot this week i can't wear my compression hose so i use the pump longer and make sure i use night time garments i know what you mean about jeans for some reason i can get black ones to fit the blue jeans just don't i think i lost a few pound able to fit into pants i couldn't 3-4 months ago so thats something but i am not s big fan of scales anyway:) keep the faith and keep trying to get that pump authorized go to first page of lymphnotes and you can get e-mail for an activist i forgot his name right now but he got back to me right away and was very helpful have a good evening :)

[pinkbear]

my ins company is just playing hard ball. they want me to show just how bad I think I need something. it's game they play. not a very nice game.

I assume you don't have air conditioning? I live in NE and it's often hot & humid over the summer. I'd die without my air. I've kept the house colder than ever before this year. Sweating in a hot garment is miserable!

Oh how I wish I could get a pump! I know it would help me get into my clothes. I'm encouraged by your progress. It gives me hope to hear someone has come so far.

So no discoulored urine huh? My test results came back all normal. I'm waiting for my so called dr. to call back so we can talk about a plan B. I must get to the bottom of this itching. I'm convinced I need a 2nd opinon.

I will look up the activits info. Thanks!

Have a good day!:cool:

[delidiva]

keep trying to get that pump!!!! robert weiss is available for help e-mail him at LymphActivist@aol.com he got back to me within 24 hours what does ne stand for new england or nebraska? don't mean to sound ignorant but just want to know yes i have central air but at wprk it gets sooo hot and the humidity sucks between my legs and all the bad hair days i'm a super mess in the summer:)happy day to u

[pinkbear]

NE stands for Nebraska. We've just turned unseasonably cool. Nice for me anyway.

thanks for the email for robert weiss. I'll be sure to contact him soon.

Take care!