Comments on: Living Life with Lipedema http://fatdisorders.org/1019/living-life-with-lipedema/ It's Not Only Food That Can Make You Fat Wed, 04 Jan 2012 11:10:33 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Lisa http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-20456 Lisa Sun, 25 Dec 2011 17:27:06 +0000 http://fatdisorders.org/?p=1019#comment-20456 Dear Ladies, I'd like to thank you all for your valuable description of our suffering from Lipedema. I don't want to say much, as you've said most of my suffering with this condition. I only wanted to add that I found two things of good results and I hope that they would be equally helpful to you. The first is the Budwick diet. it make my legs looks as close to normal as possible, nothing else helped this way even ultra sound lipo dissolve that I tried two years before that. The only drawback is that after I increase the dose of protein/ flax oil mix I get some strange feeling of tightness in my mussels. This might be due to other health issue though. Nevertheless , I'd rate this as number one in terms of its superiority to all other treatments I sought. I don't find it very nutritious though. You don't need to buy the book for the diet or anything, just google it and you'll find a lot for free. If you ever try it then I'd love to hear your feedback. In two weeks, my legs looked completely different. The other thing is iodine, I was using it for breast fibrosis but I found out that it makes the fibrotic tissues in my legs feel tender. I only take organic form of iodine ,( not Logol or anything else). I take either Kelp or Chlorella. Adding Watercress to your salad should do the same trick. I have to warn you from bromidism and you need to go gradual. Iodine will not shrink your legs like the budwick but it will make the fibrotic tissue softer! Then ,two herbs are also useful , Burdockroot and Milk Thistle both as tea would give some shape to your legs. I have to warn you that I've seen excessive body hair growth with burdock root tea. It returned to normal afterI stopped it though. I hope could be helpful to all of you and please sharing with us if you see any results from these recommendations. Lisa Dear Ladies, I’d like to thank you all for your valuable description of our suffering from Lipedema. I don’t want to say much, as you’ve said most of my suffering with this condition. I only wanted to add that I found two things of good results and I hope that they would be equally helpful to you. The first is the Budwick diet. it make my legs looks as close to normal as possible, nothing else helped this way even ultra sound lipo dissolve that I tried two years before that. The only drawback is that after I increase the dose of protein/ flax oil mix I get some strange feeling of tightness in my mussels. This might be due to other health issue though. Nevertheless , I’d rate this as number one in terms of its superiority to all other treatments I sought. I don’t find it very nutritious though. You don’t need to buy the book for the diet or anything, just google it and you’ll find a lot for free. If you ever try it then I’d love to hear your feedback. In two weeks, my legs looked completely different.

The other thing is iodine, I was using it for breast fibrosis but I found out that it makes the fibrotic tissues in my legs feel tender. I only take organic form of iodine ,( not Logol or anything else). I take either Kelp or Chlorella. Adding Watercress to your salad should do the same trick. I have to warn you from bromidism and you need to go gradual. Iodine will not shrink your legs like the budwick but it will make the fibrotic tissue softer!

Then ,two herbs are also useful , Burdockroot and Milk Thistle both as tea would give some shape to your legs. I have to warn you that I’ve seen excessive body hair growth with burdock root tea. It returned to normal afterI stopped it though. I hope could be helpful to all of you and please sharing with us if you see any results from these recommendations.

Lisa

]]> By: Angela McCarroll http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-9401 Angela McCarroll Fri, 08 Jul 2011 23:33:45 +0000 http://fatdisorders.org/?p=1019#comment-9401 I would like to leave this message for liz Hughes-Toner. I just want to say that I am from Northern Ireland and suffer from lipoedema and would love to hear further from you if possible! I would like to leave this message for liz Hughes-Toner. I just want to say that I am from Northern Ireland and suffer from lipoedema and would love to hear further from you if possible!

]]> By: liz Hughes-Toner http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-183 liz Hughes-Toner Sat, 21 Aug 2010 07:49:55 +0000 http://fatdisorders.org/?p=1019#comment-183 I'd love to find another sufferer in Northern Ireland so that we could compare notes on our DD's. My dr says "sorry its not listed on my computer" !!! so I got one and a half weeks of treatment out of the NHS and it was without the foam bandages and the correct stockings. Finally I found a wonderful therapist privately who was qualified in Lymphodema and knew also the treatment for LIPEDEMA. Although it costs a lot (for me on a pension) for each session, its worth it. I reduce about a centimeter with each completed session of bandaging. The letters above have given me heart. I always have the sneaking feeing that if I just could only starve it would all go away but when I try to cut down, I get so hungry and eat again. I think I'm dissolving into comfort eating which is disastrous. I cant walk far now most days and suspect that I will have to get a mechanical wheel chair eventually . I used to love walking but now my feet get too sore. I think I have inherited DD from my great grandmothers on my father's side. I was told as a child that they were so fat that they couldn't get on a bus and it was held up to me as a lesson in greediness. BUT I suspect that they were carrying the defective NSD1 gene too. Can I ask has anyone experienced a painful cocxix bone when getting up from being seated? I also have two metal (titanium) knee replacements and although the knees are cold on the outside they burn inside like i could fry an egg in them!! I wonder if I have an allergy to titanium as I seem to have allergies to a lot of metallic things. I’d love to find another sufferer in Northern Ireland so that we could compare notes on our DD’s. My dr says “sorry its not listed on my computer” !!! so I got one and a half weeks of treatment out of the NHS and it was without the foam bandages and the correct stockings. Finally I found a wonderful therapist privately who was qualified in Lymphodema and knew also the treatment for LIPEDEMA. Although it costs a lot (for me on a pension) for each session, its worth it. I reduce about a centimeter with each completed session of bandaging. The letters above have given me heart. I always have the sneaking feeing that if I just could only starve it would all go away but when I try to cut down, I get so hungry and eat again. I think I’m dissolving into comfort eating which is disastrous. I cant walk far now most days and suspect that I will have to get a mechanical wheel chair eventually . I used to love walking but now my feet get too sore. I think I have inherited DD from my great grandmothers on my father’s side. I was told as a child that they were so fat that they couldn’t get on a bus and it was held up to me as a lesson in greediness. BUT I suspect that they were carrying the defective NSD1 gene too.
Can I ask has anyone experienced a painful cocxix bone when getting up from being seated? I also have two metal (titanium) knee replacements and although the knees are cold on the outside they burn inside like i could fry an egg in them!! I wonder if I have an allergy to titanium as I seem to have allergies to a lot of metallic things.

]]> By: Bev Sohn http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-159 Bev Sohn Mon, 09 Aug 2010 00:07:05 +0000 http://fatdisorders.org/?p=1019#comment-159 Thanks for sharing everyone. Diane, I think you summed it up very well. Like most of you, I've been living & coping with DD and all it's surprises. I've been searching for treatment in assisting my lymph system & lipolymphedema. This is what I have tried that has been successful: CVAC System uses altitude to compress & decompress with minimal intrusion (ears popping). After 5 days of treatment about 4 hours/day, I had absolutely no pain for 3 days! www.cvacsystems.com The FlexiTouch is garment-worn intermittent compressed air alternating to various areas on the body replicating Manual Lymphatic Drainage (MLD). Through the help from my physical therapists, the reps from Flexitouch and my docs, my insurance may likely pay for this device and I may qualify for assistance with the 20% my insurance won't cover. This is exciting news for me. I will be able to do MLD properly everyday. www.flexitouch.com I receive MLD twice a week from PT and we work mainly in the pool. Aquatherapy has helped greatly, even if you just hang out in the deep end and let the water compress you. We usually do Tai Chi before massage in the pool...heavenly! I try to do MLD on myself but it's virtually impossible on the legs when you have to bend at the hips to reach, even with a brush. I tend to tire easily after doing self MLD. I believe it's really meant for someone or something to do it for me. I get better results! It's so very important for us to keep the lymphatic fluid flowing. Those of us with DD have a defective lymphatic system and we need to do everything to help it. I'm hoping through the use of all the above treatments, I'll have control over my lipolymphedema! I hope this has helped you. Keep the fluid flowing! <3 Thanks for sharing everyone. Diane, I think you summed it up very well. Like most of you, I’ve been living & coping with DD and all it’s surprises. I’ve been searching for treatment in assisting my lymph system & lipolymphedema. This is what I have tried that has been successful:

CVAC System uses altitude to compress & decompress with minimal intrusion (ears popping). After 5 days of treatment about 4 hours/day, I had absolutely no pain for 3 days!
http://www.cvacsystems.com

The FlexiTouch is garment-worn intermittent compressed air alternating to various areas on the body replicating Manual Lymphatic Drainage (MLD). Through the help from my physical therapists, the reps from Flexitouch and my docs, my insurance may likely pay for this device and I may qualify for assistance with the 20% my insurance won’t cover. This is exciting news for me. I will be able to do MLD properly everyday.
http://www.flexitouch.com

I receive MLD twice a week from PT and we work mainly in the pool. Aquatherapy has helped greatly, even if you just hang out in the deep end and let the water compress you. We usually do Tai Chi before massage in the pool…heavenly!

I try to do MLD on myself but it’s virtually impossible on the legs when you have to bend at the hips to reach, even with a brush. I tend to tire easily after doing self MLD. I believe it’s really meant for someone or something to do it for me. I get better results!

It’s so very important for us to keep the lymphatic fluid flowing. Those of us with DD have a defective lymphatic system and we need to do everything to help it. I’m hoping through the use of all the above treatments, I’ll have control over my lipolymphedema!

I hope this has helped you. Keep the fluid flowing! <3

]]> By: DONNA GONZALEZ http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-120 DONNA GONZALEZ Sat, 24 Jul 2010 19:31:42 +0000 http://fatdisorders.org/?p=1019#comment-120 THIS IS AN EXCELLENT ARTICLE, I WOULD LIKE TO THANK CAROLE FOR ALL SHE HAS DONE FOR ME. I HAVE BEEN CALLED ELEPHANT LEGS SINCE I WAS 12 YEARS OLD. I AM A VERY ATHLETIC PERSON. I LOVE TO SWIM, WALK, DO MY BOFLEX WORK OUT, AND I USED TO CLIMB. THIS DISEASE HAS BEGUN TO SLOW ME DOWN SOME, BUT MY ATTITUDE PLAYS A BIG PART WITH ME. DON'T GET ME WRONG THIS DISEASE IS VERY PAINFUL NOT ONLY TO MY BODY BUT ALSO TO MY SPIRIT; IF I LET IT. EVERYDAY I WONDER IF MY CLOTHES ARE GOING TO FIT WHEN I GET UP. I AM SO THANKFUL THAT I HAVE A FRIEND NAMED CAROLE WHO HAS EDUCATED ME ON THIS DISEASE. THIS IS AN EXCELLENT ARTICLE, I WOULD LIKE TO THANK CAROLE FOR ALL SHE HAS DONE FOR ME. I HAVE BEEN CALLED ELEPHANT LEGS SINCE I WAS 12 YEARS OLD. I AM A VERY ATHLETIC PERSON. I LOVE TO SWIM, WALK, DO MY BOFLEX WORK OUT, AND I USED TO CLIMB. THIS DISEASE HAS BEGUN TO SLOW ME DOWN SOME, BUT MY ATTITUDE PLAYS A BIG PART WITH ME. DON’T GET ME WRONG THIS DISEASE IS VERY PAINFUL NOT ONLY TO MY BODY BUT ALSO TO MY SPIRIT; IF I LET IT. EVERYDAY I WONDER IF MY CLOTHES ARE GOING TO FIT WHEN I GET UP. I AM SO THANKFUL THAT I HAVE A FRIEND NAMED CAROLE WHO HAS EDUCATED ME ON THIS DISEASE.

]]> By: President http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-116 President Fri, 23 Jul 2010 22:27:34 +0000 http://fatdisorders.org/?p=1019#comment-116 There are some people who have had gastric bypass who have FML, Dercum's disease and lipedema. In FML, the more fibrotic lumps remain in the sagging skin tissue and are removed during plastic surgery. In Dercum's disease, the symptoms improve but the syndrome does not completely resolve. In lipedema, the lipedema fat remains but "normal fat" decreases. The rapid weight loss can also make the lipedema bloom and progress rapidly to lipo-lymphedema. (Karen Herbst, PhD, MD) There are some people who have had gastric bypass who have FML, Dercum’s disease and lipedema. In FML, the more fibrotic lumps remain in the sagging skin tissue and are removed during plastic surgery. In Dercum’s disease, the symptoms improve but the syndrome does not completely resolve. In lipedema, the lipedema fat remains but “normal fat” decreases. The rapid weight loss can also make the lipedema bloom and progress rapidly to lipo-lymphedema. (Karen Herbst, PhD, MD)

]]> By: Diane http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-115 Diane Fri, 23 Jul 2010 17:52:13 +0000 http://fatdisorders.org/?p=1019#comment-115 Here's my addition that didn't make it in time.... What's it like living with Dercum's/Lipedema? It's a roller coaster ride of ups and downs. It's thinking you're feeling pretty good and ready to tackle anything; then standing up and discovering you barely have the energy to take out the trash. It's knowing that every time you see a new doctor you're going to have to explain about Dercum's and possibly be met with skepticism or worse. It's having a friend who tells you that when she's in pain she thinks of a younger person who just died and that lessens her pain. And she doesn't understand why that doesn't work for you. It's giving up the things you could always do like shop, work out, do housework, work full time, etc. because you no longer have the strength or the ability to focus or the activity will result in a painful flare. It's realizing you've gone from "I can do anything" to saying at least once a day "I can't do it." On the other hand... it's discovering that you are now part of an amazing new family in Dercum's world. Through online support groups, facebook and email you begin to know each person and think of each as a family member and friend. It's the relief that comes with finally getting a diagnosis and then finding a doctor who will work with you to treat it. It's the excitement that comes with knowing that you are part of a group of people who WILL make a difference in how Dercum's is viewed and treated. I hang on with the firm belief that I have this for a reason and I'm going to do my best to serve that purpose each day. Here’s my addition that didn’t make it in time….

What’s it like living with Dercum’s/Lipedema? It’s a roller coaster ride of ups and downs. It’s thinking you’re feeling pretty good and ready to tackle anything; then standing up and discovering you barely have the energy to take out the trash. It’s knowing that every time you see a new doctor you’re going to have to explain about Dercum’s and possibly be met with skepticism or worse. It’s having a friend who tells you that when she’s in pain she thinks of a younger person who just died and that lessens her pain. And she doesn’t understand why that doesn’t work for you. It’s giving up the things you could always do like shop, work out, do housework, work full time, etc. because you no longer have the strength or the ability to focus or the activity will result in a painful flare. It’s realizing you’ve gone from “I can do anything” to saying at least once a day “I can’t do it.”

On the other hand… it’s discovering that you are now part of an amazing new family in Dercum’s world. Through online support groups, facebook and email you begin to know each person and think of each as a family member and friend. It’s the relief that comes with finally getting a diagnosis and then finding a doctor who will work with you to treat it. It’s the excitement that comes with knowing that you are part of a group of people who WILL make a difference in how Dercum’s is viewed and treated.

I hang on with the firm belief that I have this for a reason and I’m going to do my best to serve that purpose each day.

]]> By: Kathy http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-114 Kathy Fri, 23 Jul 2010 16:25:40 +0000 http://fatdisorders.org/?p=1019#comment-114 Ladies you are wonderful!! Thanks for sharing your story.I know the pain, and have lived with lipedema for many years. Are you aware of any particular type of liposuction that would remove some of the painful fat areas,and what results have been? Anyone you know that has had it done, and where? We are not alone,we have each other. Ladies you are wonderful!! Thanks for sharing your story.I know the pain, and have lived with lipedema for many years.
Are you aware of any particular type of liposuction that would remove some of the painful fat areas,and what results have been? Anyone you know that has had it done, and where? We are not alone,we have each other.

]]> By: angela naf http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-113 angela naf Fri, 23 Jul 2010 16:14:45 +0000 http://fatdisorders.org/?p=1019#comment-113 thank you for writing this. i started to "change" right around the time i got my first period. i was shy to begin with, but why was everyone so mean to me? at that time, i still didn't get that i was different. my legs were so big, and jiggly, and painful. and, man, were they brutal to me. all my life i wondered why my fat was jiggly, why i couldn't ever get any color in the sun (erxcept my face, which always burned). and this insecurity followed me at every step. i was reading a textbook for school which described lymphedema. there was one paragraph that changed my life. it described my legs, how they bruise (it seems even if you just look at them), how they hurt when you touch them. it described the way my feet and hands were just perfect, but my hanging, wiggly arms and calves were diseased. and i read there was no cure. i cant tell you how long i cried. i had read every fitness magazine, and dreamt that my legs would tan if i was just a little smaller. they wouldn't jiggle when i walk if i just did more aerobics. it was devastating. i can't remember if my legs changed when i had my son 6 years ago, but i have learned that this is tied in with hormonal shifts. i am 36 years old, i want more children.. but i'm afraid. its devastating. my son and husband are so good to me, my son rewraps my leg wraps with me at night. after they are wrapped, he "massages" them for me. he knows that my legs and arms are "sick", and he loves me by rubbing them, and telling me i am beautiful. but what is going to happen when he gets older, when i go to school functions and his friends see me? i'm not going to lie, this is hell for me. it sucks, and its not fair. but with the help of my friends and my family.. i will just keep on.. and find joy. thanks again. thank you for writing this. i started to “change” right around the time i got my first period. i was shy to begin with, but why was everyone so mean to me? at that time, i still didn’t get that i was different. my legs were so big, and jiggly, and painful. and, man, were they brutal to me. all my life i wondered why my fat was jiggly, why i couldn’t ever get any color in the sun (erxcept my face, which always burned). and this insecurity followed me at every step. i was reading a textbook for school which described lymphedema. there was one paragraph that changed my life. it described my legs, how they bruise (it seems even if you just look at them), how they hurt when you touch them. it described the way my feet and hands were just perfect, but my hanging, wiggly arms and calves were diseased. and i read there was no cure. i cant tell you how long i cried. i had read every fitness magazine, and dreamt that my legs would tan if i was just a little smaller. they wouldn’t jiggle when i walk if i just did more aerobics. it was devastating. i can’t remember if my legs changed when i had my son 6 years ago, but i have learned that this is tied in with hormonal shifts. i am 36 years old, i want more children.. but i’m afraid. its devastating. my son and husband are so good to me, my son rewraps my leg wraps with me at night. after they are wrapped, he “massages” them for me. he knows that my legs and arms are “sick”, and he loves me by rubbing them, and telling me i am beautiful. but what is going to happen when he gets older, when i go to school functions and his friends see me? i’m not going to lie, this is hell for me. it sucks, and its not fair. but with the help of my friends and my family.. i will just keep on.. and find joy. thanks again.

]]> By: Diane http://fatdisorders.org/1019/living-life-with-lipedema/comment-page-1/#comment-112 Diane Fri, 23 Jul 2010 14:47:26 +0000 http://fatdisorders.org/?p=1019#comment-112 Thank you, Carole for the outstanding job you did!!! Thank you, Carole for the outstanding job you did!!!

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