I dream of a day that I can wear a pretty dress with sandals

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I dream of a day that I can wear a pretty dress with sandals

Postby Maria » Thu Mar 08, 2007 10:07 pm

Hello,
I am 41 yrs old and have had LE in my left left for almost 3 years. I had fleeting LE that started with my pregnancy in 1996. At the time I didn't know what was happening to me. From 1996 - 2003 I would go thru periods where my lower leg would swell. I used to get depressed not knowing what was causing the swelling. I didn't know how good I had it at the time. I continued to exercise and was in great shape during that time which probably helped hold off LE from coming on full blown. On a business trip to the UK I developed an infection in my lower leg which caused me to get LE in my entire leg.

During the past 3 years I had tried different therapies. First, MLD and compression. This I hate, because it is restrictive and takes way too much time. I used a pump which was ineffective and didn't have enough instructions. When I got the pump I also got a Tribute sleeve which I wear every night. I had tried Kinesio tape but didn't get the results that I thought I should. I got tired of the taping. (I'm a little lazy at times). For the past two years I have been going to a chiropractor for adjustments and massage therapy. This has been helpful but is not a cure-all. My next quest is to try Light Beam Generator therapy. I am seeing a therapist on Sunday. His belief is that to manage LE you must apply many therapies and maintain good nutritional habits. I am in full agreement about the nutritional habits. I have found that food definitely determines how much I swell. The more fruits and vegetables I eat the better I feel and my leg is softer. The best meal I eat which makes my body feel good is a wild green salad with wild salmon topped with Caesar dressing and ground flax seed. I have eliminated all trans-fat foods from my diet. My goal is to be as healthy as possible though I still love pie.

I will keep trying to beat LE for I still have half my life to live. I have not reached my fullest potential yet and there is much to learn......
Maria
 
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Joined: Mon Feb 26, 2007 11:35 am

Postby patoco » Thu Mar 08, 2007 11:41 pm

Hi Maria

Unfortunately, clinical study after clinical study has demonstrated that MLD with compression badnages/garments is the protocol and very best treatment available for lymphedema.

One thing I look for with any proposed treatment is whether or not independent (preferably double blind) clinical studies wll back up any claims of the treatment.

Treatments from a chiropractor are going to do nothing for lymphedema and there are no studies validating its effectiveness and the same holds true for this Light Beam Generator therapy.

Here is my note on our page regarding this:

My Opinion

As an individual who has had to cope with lymphedema for over fifty years, I wanted to establish a website that would bring any and all possible information on lymphedema, the lymphatics, research, treatments etc. into one place on the internet.

As such, I have presented information on a broad range of treatment options, even though I personally may disagree with them and the scientific.medical validity of the treatments. This subject however, stretches my patience and tolerance.

Supposedly these devices flood the body with ions, making claim to break up lymph blockages, reverse fibrosis of the tissues, cleanse the body and restore vibrant health.

The problem is the I can find absolutely not one independant medical or scientific shred of evidence to back up these claims. There are no double blind clinical studies (that I can find), no autonomous studies that verify its effectiveness.

What we do have is a very expensive treatment modality that someone created, put out self-proclaimed stories of effectiveness and success - and even started a foundation that you can give money too (if you have any left after treatment) to further their "new-age" medical studies.

Those of us who must endure and cope with lymphedema crave successful treatment, even long for a cure. But we can not accept someone's claims just on their face value. We must demand evidence - apart from their claims. We must demand indepedent studies, clinical evaluations that come from legitimate sources, who especially do not profit from the products or treatment devices.

All I simply request is that a credible source, apart from the inventor and sellor verify its claims. Also, we expect independent verification of its safety, long term affects and reports on any placebo effect.


There are also studies out that indicate regular body massage may actually worsen lymphedema. It is a totaly different type of massage then MLD.

In an article published by the National Lymphedema Network, Joachim Zuther writes, "The application of traditional massage -- that also includes other massage techniques which cause active hyperemia -- is therefore contraindicated in extremities affected by lymphedema, as well as in the ipsilateral trunk quadrants." He goes on to say this is also true for areas in which lymphedema is not present, but for which there is a risk. Zuther, the director of the Academy of Lymphatic Studies, also believes massage to the contralateral quadrant may have negative effects. I believe the term "active hyperemia" is the pivotal point upon which Zuther's position rests.

Finally, I am a firm believer in a good healthy diet, but again, there is no one specific diet that is going to "help" lymphedema. Generally, it is weight that is the issue, more then simply a diet. If you have lymphedema it is best to control your weight as obesity does make it more difficult for the lymph system to function and morbid obesity can actually cause lymphedema itself, by the crushing of the lymphatics.

Exercise is important because one way the lymph system works is thru muscle action. Aqua therapy and/or swimming is absolutely great for LE.

I wish there was an easy quick answer for lymphedema, but there isn't.

MLD, compression bandages/garments, exercises all may take more time, but they will also produce the best results.

Best to you

Pat O
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby patoco » Thu Mar 08, 2007 11:42 pm

Hi Maria

Unfortunately, clinical study after clinical study has demonstrated that MLD with compression badnages/garments is the protocol and very best treatment available for lymphedema.

One thing I look for with any proposed treatment is whether or not independent (preferably double blind) clinical studies wll back up any claims of the treatment.

Treatments from a chiropractor are going to do nothing for lymphedema and there are no studies validating its effectiveness and the same holds true for this Light Beam Generator therapy.

Here is my note on our page regarding this:

My Opinion

As an individual who has had to cope with lymphedema for over fifty years, I wanted to establish a website that would bring any and all possible information on lymphedema, the lymphatics, research, treatments etc. into one place on the internet.

As such, I have presented information on a broad range of treatment options, even though I personally may disagree with them and the scientific.medical validity of the treatments. This subject however, stretches my patience and tolerance.

Supposedly these devices flood the body with ions, making claim to break up lymph blockages, reverse fibrosis of the tissues, cleanse the body and restore vibrant health.

The problem is the I can find absolutely not one independant medical or scientific shred of evidence to back up these claims. There are no double blind clinical studies (that I can find), no autonomous studies that verify its effectiveness.

What we do have is a very expensive treatment modality that someone created, put out self-proclaimed stories of effectiveness and success - and even started a foundation that you can give money too (if you have any left after treatment) to further their "new-age" medical studies.

Those of us who must endure and cope with lymphedema crave successful treatment, even long for a cure. But we can not accept someone's claims just on their face value. We must demand evidence - apart from their claims. We must demand indepedent studies, clinical evaluations that come from legitimate sources, who especially do not profit from the products or treatment devices.

All I simply request is that a credible source, apart from the inventor and sellor verify its claims. Also, we expect independent verification of its safety, long term affects and reports on any placebo effect.


There are also studies out that indicate regular body massage may actually worsen lymphedema. It is a totaly different type of massage then MLD.

In an article published by the National Lymphedema Network, Joachim Zuther writes, "The application of traditional massage -- that also includes other massage techniques which cause active hyperemia -- is therefore contraindicated in extremities affected by lymphedema, as well as in the ipsilateral trunk quadrants." He goes on to say this is also true for areas in which lymphedema is not present, but for which there is a risk. Zuther, the director of the Academy of Lymphatic Studies, also believes massage to the contralateral quadrant may have negative effects. I believe the term "active hyperemia" is the pivotal point upon which Zuther's position rests.

Finally, I am a firm believer in a good healthy diet, but again, there is no one specific diet that is going to "help" lymphedema. Generally, it is weight that is the issue, more then simply a diet. If you have lymphedema it is best to control your weight as obesity does make it more difficult for the lymph system to function and morbid obesity can actually cause lymphedema itself, by the crushing of the lymphatics.

Exercise is important because one way the lymph system works is thru muscle action. Aqua therapy and/or swimming is absolutely great for LE.

I wish there was an easy quick answer for lymphedema, but there isn't.

MLD, compression bandages/garments, exercises all may take more time, but they will also produce the best results.

Best to you

Pat O
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby Daisy » Mon Mar 12, 2007 10:06 am

Maria,
I had typed a long, obviously brilliant reply :lol: ...but the MSE crashed so let me try to recreate it. We're the same age, and we've been actively trying to manage our LE for about the same time, although I've had it since college.

To make an analogy - you are trying to find the next "quick weight loss plan" for LE. You tried the "eat better, move more" plan (MLD) but it wasn't comfortable so you moved on to anything that promises to work. The danger with doing that, like dieting, is that you can make your problem worse, or like phen-fen, create a new serious problem that you didn't have before.

I didn't find a solution until I changed my mindset. I had to move away from the anger of "I have to dry between my toes because I have LE and it (stinks)" to "this is pampering time". While I still don't like spending the time I now make it a decompression time for myself (pun intended) - a time when I get the bathroom to myself (I have 2 kids) and refocus on letting the day's stress fall off.

I've also found that taking the time to wear my stockinds and Tribute means that I don't have to wrap. I only need to wrap now when I've ignored my legs and they start to flare.

This post isnt' as witty as my first one (darn MSE), but I hope you can see the message I'm trying to get through.
Daisy
 
Posts: 19
Joined: Thu Feb 08, 2007 8:07 pm

Postby silkie » Tue Mar 13, 2007 3:24 am

Hi Daisy

I have to agree with you The most importany part of the day is THE I'M WORTH IT TIME.

It is a pain in the butt when you make MLD wrapping ,akin care bottom of your list of priorities but When you finally see that this time spent on the care of your limbs makes the quality of life for tomorrow a little better
it is so worth it.

MLD and self care is the most important job of the day
if i look on it as a chore then i neglect it The househo;d chores day to day living all come after me I wouldnt dream of going out without a shower Well i wouldnt dream of ending my day without my mld and wrapping

if i look upon it as keeping my limbs as fit as possible it means a better day tomorrow

WHAT WE DO TODAY FOR OUR LYMPH FOR ME MEANS WERE GIVING OUR BODIES A BETTER CHANCE OF AQUALITY OF LIFE IN OUR TOMORROWS

hUGGGGGG

Silkssssssssssssssssssssxxxxxxxxxxxxxxxx
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Pretty Dress and shoes

Postby Cindy » Tue Mar 13, 2007 2:27 pm

Hey Maria I have le in both my legs and feet. I still wear pretty dress's and skirts. They are long. But I feel very pretty in them. I would not wear a short dress. But I didn't before le. You don't have to give up being pretty just because of le. No one needs to know what is under your skirt :lol: Everyone else said all about the treatment of yourself for le. It is in your hands. God Bless.
Cindy
 
Posts: 41
Joined: Mon Aug 21, 2006 12:16 pm
Location: Wa. State


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