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If you have an experience or a tip you would like to share with others - please email us. It may help someone. If you have an enquiry about treatment, please email us. There may be help for you.

I have a male friend that has been diagnosed with lymphoedema. He has had flare up of the groin area three times in the last three years. The scrotum swells up to elephantitis size with a high fever. He has experienced this after an airplane flight and also twice after driving through a change in high altitude. The swelling is accompanied by a fever of 103 degrees and chills. Has anyone else experienced the swelling of only the groin area?
Carnes
Rapid City, SD United States
-Friday, December 20, 2002 at 06:15:54 (EST)

a tip for anyone who has lymphodema [ I have hereditary lympheodema or milroys disease] and suffers from recurring infections. ALWAYS carry two antibiotics. two panadol and a small bottle of water with you. The quicker you get those tablets into your system the better. Don't let the doc tell you the panadol wont make any difference-- after a life time with infections I know all about the soet that attacks lympheodema.
Patty Jagodic
Barham, NSW Australia
-Sunday, December 15, 2002 at 23:08:31 (EST)

My mum Pat has severe lymphoedema in both legs, both arms, torso most of her body. she has a book out about her experiences at webpage www.globalpresence.com.au/milroys feel free to also contact her by email on [email protected] anyone wishing to email her would be answered as soon as possible.
BRONWYN HEHIR
Wakool, NSW Australia
-Friday, December 13, 2002 at 20:51:29 (EST)

Hello everyone, I just found your site while using the yahoo search engine. I hope I don't talk you to death :)

Well, I was trying to see if such a thing existed as snow boots that I could wear even though I have swelling in my ankles. I've had it really bad for about a year now and no doctors seems to able to tell me whats wrong. I recently found out it was Lymphodema about 2 months ago from someone I finally met at a get together that had the same thing I did. The doctor I saw prescribed water pills but in a newgroup someone told me I should use them becuase in the long run it will do more harm than good.

Other than me being about 410 (i'm about 5'10") I don't have any health problems (I had a phsyical a few months ago), No high blood pressure, diabetes , etc.. I'm just having a REALLY hard time finding socks and comfortable shoes, and I've been on the look out trying to find snow boots with no luck. Does anyone out there know of any place I could get some from? I wear about a size 11 1/2 womens sneaker. Knee high stockings are driving me nuts since now my left leg has an almost permenent ring where the stocking likes to stop :/ My right leg isn't as bad. I think it really got bad last year, not sure why I haven't gained any weight. Everyone says I look like I've lost weight.

I've been through ALOT of family tragedies in the last year and wonder if it could have been stress? I used to get swelling but it would go away before. but now it would start and it didn't go away. I'm 32 years old. Maybe I can get more into everything later. :) I really need to find boots since usuallly we get really bad weather here.. I can only hope it will be like last year I think we had just 1 day where anything stayed on the ground and made it icy. :( I need to move to florida :P I'm open to email if anyone wants (I need to empty that silly Yahoo box if it says its full PLEASE try again.. I try to keep it empty but I've been getting anlot of junk mail lately). Or if anyone else lives out there way and wants to chat. I''m glad I found a place where I can go to talk and share.
Tessa
Philadelphia, PA United States
-Wednesday, November 27, 2002 at 11:46:35 (EST)

hi there, i had a radical mastectomy plus lymph gland removal in july,i was plagued by infections and odeama.after 5 months have got the infections under control,but i have been left with a very raised and lumpy scar and lymphodeama inthe right arm cheat and abdomen
does the fluid in the abdomen ever go , i have a super physotherapist and will be having a compression sleeve soon .any tips on general management.thank you all lindaxxx
linda topham
perth, wa Australia
-Monday, November 25, 2002 at 02:05:58 (EST)

I have had radiation treatments to the face 7//19/02) and they tell me I have cellulitus. However, this is the 3rd bout since 7/19/02. Face swells, red, burns, itches. Hospitalized with iv's will take care of it but it comes back. Any suggestions?
Marjorie Read
Chattanooga, TN United States
-Thursday, November 21, 2002 at 04:58:54 (EST)

I have been weight training for 58 yrs and have been coaching the elderly for a while. I have been approached to work with some lymphoedema patients. Would like to know if anyone especially in Melbourne can get together and compare notes
Eric Rosario
Melbourne, Vic Australia
-Saturday, November 16, 2002 at 13:34:09 (EST)

I am 58 years old and have Milroy's disease. I have swelling from the waist down, worse in lower legs, ankles, and feet. I am a twin (she does not have Milroy's) and we were 2 months premature and from what I have read, my lymph nodes/glands just did not develop. I have had 50+ episodes of cellulitis since 1970, some doctors say cellulitis; others called it surface phlebitis. Some gave me antibiotics and others gave anti-inflammatory meds. I've been on diuretics/potassium since the age of 13 and some years was discontinued because I was losing too much potassium. I have never been able to tolerate the heat and now am having thyroid problems and a low body temp of 95.4-96.8 and still am hot. When traveling to the Texas coast years ago I swelled up just from the salt in the air. I have learned that spicy foods, Caesar salad dressing, worchestire sauce, iodized salt, all pork and all fish (even fresh-water) aggravate my condition. I used a leg pump for many months but it made one of my legs worse (broken veins, varicose veins).
I work a full-time job, have had to get a handicap parking permit to park close to the building. Extended walking, standing, or sitting just pools the fluid to my legs and feet (probably some is gravity, too). I have placed an ottoman under my desk and prop both legs up during times of sitting for extended periods of time at the computer; it helps!
My three pregnancies were difficult, especially the last few months and even more when I was pregnant during the summer months. Smaller meals seem to help.
I now work for a medical center; walking anywhere in a crowd is humiliating and embarrassing, but I thought at a medical center people would be more understanding (duh!). The stares, as you well know, hurt and I wear long skirts, but my feet are still obvious!
I am a part-time Methodist pastor and my husband (retired Meth. pastor) is very loving and understanding. I'm sure my legs have been an embarrassment to him and our children.
I have cried over my legs again and again, some for the pain and some for being embarrassed. My family of origin does not understand and thinks if I will just lose a lot of weight, the swelling will go away; but that didn't work.
Just about every pair of shoes I've ever worn have cut into my feet. It's hard to find any shoes that fit.
I didn't know there were so many of us! Don't lose heart! We are valuable and loved; we are not our legs! God bless you all!
Ouidga ("Wee-juh" Meyers
Dallas, TX United States
-Thursday, November 07, 2002 at 00:23:44 (EST)

Hello there I am fifty three years young and have had lots of challenges in my life but the biggest is LO But this is my story, when I first discovered why my legs were so swollen I was devastated but then I decided get on with life and live and too all you people out there thanl you for your courage and your willingness to share all about where you at. At 53 I still want to enjoy life as well as endure this chronic challenge. I have put off wearing the stockings for years but now that I have them I realise the loss off permanent pain means that I can endure the stockings. I do aquajogging at the pool four times a week, this helps to keep the pain less and the fluid more in my body and less in my legs. In Wellington there is no support group so I have put notices in all of the papers and the responses are starting too come in There are support groups in Auckland and Christchurch. Thank you for your honesty and willingness to share with others
Joan O'dEA
wellington, -Friday, November 01, 2002 at 12:14:15 (EST)

I was wondering about exercise after having lymph nodes removed due to breast cancer... if you excercise .. does it cause inflammation?
JB
na, na -Wednesday, October 30, 2002 at 13:07:08 (EST)

Please some one tell me about cancer of the lympth gland as my daughter in law has just been diognosed with this and has it removed and now must have a cat scan to see if mor glands hve it. Elizabeth U.K.
Mrs Elizabeth Hinks
Maidstone, Kent United Kingdom
-Thursday, October 24, 2002 at 01:48:12 (EST)

Hello all! My name is Lisa, I too suffer from lymphoedema. Mine is in my left leg.In December of 1999 I had already been to my physician 3 times for swelling of the left foot. He had sent me home saying it wasnt bad but to return if it continued, then 2nd time said it wouldnt hurt to lose weight, I was not heavy! then the 3rd time said if it kept up I should take water pills?! What he should have done was order and MRI and he would have known I was suffering from stage 3b cervical cancer! Now I look like one of those horrible movies I remember seeing in science class. I do try... and do manual lymph drainage therapy. I have been to 3 different therapists. I also have used the pump, DONT USE THEM THEY ARE BAD NEWS! I used it every nite thinking it was the magic cure, and only succeeded in causing a lot of fibrotic tissue which is sooooo painful to massage. I also have a wonderful husband who helps me do my therapy, not every day like we hope( we do still have lives to live don't we) and also I want to say this, don't feel guilty when you don't do your therapy. It's just like a diet, just get right back to it! I have a great video which I do along with my therapy its by Axon Software, narrated by Loraine Lovejoy-Evans and is on Lower extremity Bandaging and self massage. I have other decongestive videos yet I prefer this as its taught me to do the therapy by myself. It's hard to reach your lower leg, yet it makes me feel good not to have to bother my husband. I feel more independant.If you want to order the video( i know they have them for upper body lymphaedema also)ph# 1-800-300-5512 I will talk later, write to me if you like, I will answer all letters. It is so great that we all have each other to share with. Have a nice evening, Bye
Lisa Grossi
Lompoc, Ca United States
-Saturday, October 12, 2002 at 13:09:16 (EST)

Hello All,
I am a lymphodema sufferer due to cancer surgeries. The swelling started about 18 months after my last cancer treatment. My major side effect from this was also having bouts of cellulitus that would come on very suddenly and very viciously. Several trips to the emergency room and many hospital stays finally got me a visit to a specialist in order to figure out how to deal with the cellulitus and lymphodema. The infectious disease specialist recommended preventive injections of penecillin every 4 weeks in order to keep the infections from rendering me useless. It has worked wonders. I haven't had a cellulitus attack in several years now. I can now go 6 weeks between shots. My concern is that I will build up an immunity and that the penicillin won't do the job for me. Is anyone using this preventive technique to control their cullulitus? Now to the swelling issue. This bothered me for years. My right leg would swell so bad I couldnt wear pants because the one leg wouldn't fit in them. Tried the stocking routine, helped, but caused more problems due to them cutting into my knees and I would develop infections. Then I tried the pump. Again helped, but wasn't enough to really do much good for me. Then on a whim I tried a trick my mom mentioned one day that they use to use for swollen ankles in pregnant women, bricks. Two bricks placed under the mattress at the end of the bed. It worked. It's not so much height that you sense it, but it's enough to help the leg drain at night. I also started working out in the pool and got back into SCUBA diving. The water aerobics was the best thing ever for my leg. The pressure from the water helped to work the fluid out. When I go SCUBA diving my leg looks just about normal. The increased pressure at depth apparently helps my body move the fluid out of my leg. In addition I walk a lot for fitness and watch my salt intake. I hope this helps someone and I hope that someone can tell me their experince with the preventive treatment for cellulitus.
Thanks
Dawn
Atlanta, GA United States
-Saturday, October 12, 2002 at 12:10:01 (EST)

Could you please supply me with possible treatments for the recurring lymphoedema I'am experiencing. I have searched extensively for cures but nothing seems to reduce the amount of times I experience this condition.

Thanks
David
David Esau
Cape Town, South Africa
-Friday, October 11, 2002 at 23:03:06 (EST)

please send any information about lymphoedema treatment and how long will it take.
rahmah mohd.noh
johor bahru, johor Malaysia
-Thursday, September 26, 2002 at 01:12:18 (EST)

There is humor in every situation, no matter how grave it seems.
I had Breast cancer surgery on 12/02/98. Less than two weeks later, i developed cellulitis from contamination in the wound site. It happened in the hospital during surgery. The cellulitis was horrific. Had dimpling of breast, it turned bright orange, (peau orange). The swelling and infection spread to my left chest,back and entire arm. The breast was so very painful. We named it "The great pumpkin". It resembled said vegetable because of the ropey, stringy veins of lymphadema and cellulitis.

I went on the inter-net looking for some help. One response i got was from a "lunatic" somewhere in Pennsylvania. (or so i thought at the time) This gal suggested i heat huge cabbage leaves in very hot water, cool a bit, and while still warm, wrap the breast in cabbage leaves. We laughed at that one. Well here it is 2002, and recently i read how folks are using heated cabbage leaves to take down the swelling of cellulitis and lymphadema, after cancer surgery.

I'm allergic to latex, and get very ill wearing the pressure bandage by JOBST. COMPANY. I'm trying to find another device, a latex free pressure bandage. If anyone knows of such a company, please e-mail me quickly.....

I know of Circ-air company of San Diego, California. But there is another company with a Germanic name, i just can't remember it. Something like Scheinfeld, Schlifen, .......is a two part company name. If any of you guys can help me, i would greatly appreciate it.

My left arm is practically useless. I can type by resting my wrists on one of those gel filled wrist rest thingies. I cannot raise the arm over my shoulder. I also have arthritis and need a pressure bandage that has velcro closures.

Thanks again,
R. C. Craig
West Islip, ny United States
-Monday, September 16, 2002 at 10:12:54 (EST)

Wow, how wonderful to find people in the same boat as me! I have always had a problem while in public seeing out of my peripheral vision, there will be a woman from the local pentecostal holiness church looking at my face and then looking down at my leg. She will always ask, "honey, what happened to your leg to make it swell up that way"? I always felt I had to explain to this total stranger, that I was born this way. That the water pumped in but wouldn't pump out. I was made to feel self conscious and would not dare ware a dress after the kids in the 7th grade thought it was the funniest thing they had ever seen and laughed at me all the way to gym class (didn't dress out that day). One day the same scenario happened. God, where do these people get off and where do they come from? This lady actually bent down to view my leg and popped me on the arm and asked what was wrong. Well, maturity and finally realizing there was a whole lot more to my personality than this strange desease I have, empowered me. I told her it was none of her business. She was shocked at my response and replied that she was just concerned and I said, "no, you were noisy". I never felt better since the day my class mates laughed at me!

Any way, I always thought it would be great to find someone with the same problem, only on the left leg, that wore the same size shoe as me(71/2) and we could buy shoes together! That has always been disapointing to me to not be able to buy the shoes I wanted. I am a very well dressed woman except for my shoes. Any way, the older I get (43 now) the worse my problem gets. I have been encouraged by this site to get the massage machine and use it at night. I usually soak my foot in ice water when the swelling and pain gets to me in those hot summer days. My friends find it comical when we are at the beach and I make them bring me more ice or water to go in the pan I am soaking my foot in. I have gained the nick name "queenie". And I love it.

But seriously, this is an uncomfortable, painful desease that I have lived with all my life. As I have said the older I get the worse it seems to be. I have to limit my activities due to pain and discomfort and I hate to tell anyone I can't do something because of my leg and foot. I am begining to have problems at work by sitting all day and at the end of the day the swelling is so bad and the pain is getting so I can't stand it any more. The pain is hard to explain to others because it's not like a broken limb or cut or something of this nature. It is swelling pain. To touch my skin drives me crazy. Maybe we should invent a word to describe the pain. Swain? (smile)

Thanks for this site and allowing me to air my feelings and see the treatments you guys have tried. I have been so alone with this desease and have never talked to anyone that has the same problem. I look forward to using the massage machine and for those of you that are insecure and self conscious about your desease, get over it guys. We are special because we are different. My husband (who is deceased now in 2000)used to tell me I had Fred Flinstone feet. We would laugh about it and it enabled me to see who I really was, not what my leg and foot made me out to be.
Tammy
pelham, ga United States
-Saturday, September 14, 2002 at 07:18:08 (EST)

My husband has MILROY DISEASE. He Was born with it. I am looking for a doctor that specializes in the LYMPHATICS SYSTEM OR IN THIS DIESEASE. Please email me with any information of this kind. Thank You
kim
tx -Thursday, September 12, 2002 at 02:23:23 (EST)

hi my mom also has just recently found out she suffers from lymphodeama she has had a hard time with finding anyone to help her with dealing with it yes not even family or friends have been able to give her the support that she needs.it has gotten to the point that shes in a constent depression and is angry alot too we all love her so much but dont know what to say or do to ease it for her can someone PLEASE help me in trying to help her and maybe give her the support she needs her email is [email protected] please again if anyone can do this for not only her but for us as well id love it thank you
tanya
mesa, az United States
-Sunday, September 08, 2002 at 05:15:25 (EST)

Hi, I have lymphoedema in both legs and abdomen. My left leg is bad and looks like an elephant trunk and my abdomen has a very defined heart shaped growth considered to be lipoedema. I have seen doctor after doctor, who write me off because off my obesity. I was 300lbs and now due to the fluid in my system, I am 401 lbs.

Thanks to the internet I have found some help finally at a clinic in Olympic, Washington but because I am Canadian, I am waiting for our OHIP, (I Pray) to help cover the costs.

My tip to you is no matter what "NEVER GIVE UP!"

Your life is important and you need to fight for it. It is tiring but worth it. I am on welfare and fighting each and every day. Doctors say I am going to die from this and I refuse to believe this because I now know even though it is incurable, it is controlable.

Take care and stay strong!
Clara
[email protected]
Clara Robinson
Sault Ste. Marie, ON Canada
-Saturday, September 07, 2002 at 08:14:46 (EST)

Hi, I have lymphoedema in both legs and abdomen. My left leg is bad and looks like an elephant trunk and my abdomen has a very defined heart shaped growth considered to be lipoedema. I have seen doctor after doctor, who write me off because off my obesity. I was 300lbs and now due to the fluid in my system, I am 401 lbs.

Thanks to the internet I have found some help finally at a clinic in Olympic, Washington but because I am Canadian, I am waiting for our OHIP, (I Pray) to help cover the costs.

My tip to you is no matter what "NEVER GIVE UP!"

Your life is important and you need to fight for it. It is tiring but worth it. I am on welfare and fighting each and every day. Doctors say I am going to die from this and I refuse to believe this because I now know even though it is incurable, it is controlable.

Take care and stay strong!

Clara
[email protected]
Clara Robinson
Sault Ste. Marie, ON Canada
-Saturday, September 07, 2002 at 08:14:31 (EST)

hi i found out my mother had milroys disease only after she died about 5yrs ago my sisters and i where told we where at risk of getting this getting this disease now i find at the age of 48yrs that my feet ,hands and legs are swlling all the time i am worried that i have this complaint the worry is not just for myself i also have two daughters and a son one of my daughters already has swollen limbs she is 26yrs i will say goodbye now lee
lee
bexley, xxxxxx United Kingdom
-Thursday, September 05, 2002 at 03:48:25 (EST)

My name is Pat Jagodic, this is to update on my ad I have a new contact name to email to find about my book. Please feel free to look in my book on [email protected]/milroys

This is a new email address please disregard all of the other ads on this message board.
take care from pat. i have had lymphoedema for a long time at least 40 years. And I am now 62.
Pat Jagodic
Barham, N.S.W. Australia
-Friday, August 23, 2002 at 13:41:50 (EST)

My wife has been dealing with lymphedema for a couple of years now, using compression bandages and lymphatic massage. A device we purchased that has been a great help is the Lymphstar Pro. It loosens the lymph fluid considerably, making the massage and bandaging much more effective. We highly recommend it. The website is www.arcturusstar.com (We have no financial or other interest in the business that sells this device.)
Bob Beiswenger
Huntingdon Valley, Pa United States
-Thursday, August 22, 2002 at 22:34:19 (EST)

I have had swollen legs for some time, and was only just recently told I had Lympoedema. My doctor looked at my legs and said it could be Lympoedema learn to massage your legs. With this I had no idea what to do, it was only by coincedence that my daugther's little school mate's mother was a Natural Therapist working with Lymphoedema patients, so I went to her. She has been absolutely fantastic. She has given me so much information, and helped me understand my condition. She has been my rock in this whole ordeal and supported me. When I was 14 years of age I had my varicous veins stripped, and now 13 years down the track I have Lympoedema. I have completed a complete course of Complex Physical Therapy and I am now in compression stockings. My legs feel good nearly no pain, they look better and they don't swell nearly as bad as they used to. Now I just have the struggle of trying to reduce my weight (unfortunately you can't massage the weight away, just the fluid). My Natural Therapist continues to treat me, and support me in all aspects of my condition, and I now know that I can get on top of this and take control of it, and not let it control my life. My advise to anyone who has Lympoedema, find yourself a good Therapist who specialises in Lympoedema, have the course of Complex Physical Therapy, and get into a compression garment, you will definately reap the benefits, even thought the cost is expensive, you'll benefit so much from treatment.
Tamara
SA Australia
-Tuesday, August 13, 2002 at 18:31:21 (EST)

I have had Lymphoedma for almost 12 years. It started in left foot and was undiagnosed for quite some time. I eventually saw a specialist who told me that if I had the veins stripped in both legs the problem would not worsen. He must have been a used car salesman in his spare time, as I now look like the incredible HULK! Massage therapy has helped, but like the rest of you, getting this done all the time is not always possible. I do have a video however, this is on exercise and when I stick to it and watch my diet, I do have radically good results.
The Therapist I see is in Sydney, Aust. and she used and sells to me a powder to be used in the massage. This powder is made from Buckwheat and contains Coumarin 10%. I have also been told not to have any punctures on affected limbs, and also not to have horizontal cuts (surgery), always, if necessary, to ask for vertical incisions.
I have also been told that the lungs are affected when the fluid level is high, so in order to keep fluid from troubling heart and lungs, to keep massage and compression as a daily ritual. I will ask the Therapist that I see if she will allow me to print her details and also if there is any other help that she can render.
I have asked others in a group that I attend, if they have trouble with HEAT in their limbs, and they appeared not to. However I do, and wonder if this is all part of it?
One last thing, i now remember being told not to sleep on the affected side, if it is an arm which is swollen. Thank God I have found some other normal people with this abnormal condition. I wouldn't be dead for all the tea in China, so I'll put up with it. Good luck to all.

JUNE HOSKIN
GLENWOOD, NSW Australia
-Saturday, August 10, 2002 at 00:51:26 (EST)

Hello I amstruggling to get my message onto the board. My name is Hazel . I have lymphoedema in both legs. I'd love to e mail someone who would also like to loose weight.
Hazel [email protected]
Hazel
Doncaster, Great Britain
-Friday, August 02, 2002 at 08:18:11 (EST)

Hello, my name is Hazel . I am 50 years of age but fortunately thanks to my parental genes am still young looking.I was married for 28 years,I have been divorced for two years ( partly as a result of the lymphoedema)and am now in the fortunate or unfortunate position of dating again with swollen limbs and support tights that make me feel like Norah Batty!! ... real passion killers .
I developed Lymphoedema in both legs seven years ago following a hysterectomy due to cancer. For quite a lot of years I was able to work fulltime as a headteacher and I controlled my lymphoedema with support garments and Manual Lymph drainage that I received from the hospice. In 2001 however I moved house following my divorce and my lymphoedema changed. One leg got much better whilst the other leg deteriorated. I have no idea why this should have happened. Has anyone else had a strange change in their limbs like this?
I would also like to mention our support group in Sheffield. We now have about twenty members and meet every month. If you are interested you can contact me by e mail.
Has anyone else in England used drug treatment or laser treatment? Please let me know if you have.
Best wishes to everyone out there with this condition. This is the first time I have seen this site and I found it very moving.If there is anyone who would like to share some support about losing weight to improve their lymphoedema I would welcome it. Finally can I say that I am positive , ready to fight for my right to remain a sexy attractive woman, I have my naughty days when the tights come off and I go barefoot. I refuse to follow helpful suggestions to wear sensible shoes that support my feet and still totter around in heels. I think I was born to be a rebel!!
Hazel ; BakeHPL@ AOl.com
Hazel
Doncaster, Great Britain
-Friday, August 02, 2002 at 08:11:51 (EST)

i was diagnosed with cellulitus in my left leg. my foot was swelled my leg was red and swollen. it was very painful, i was put in the hospital and put on cephalexin 500 mg. it was clearing up pretty good, but now it looks as if its coming back.what can i do?
kathy werts
renovo, pa United States
-Wednesday, July 31, 2002 at 11:17:14 (EST)

I had a partial hysterectomy, and 2 months later experienced swelling and pain. My doctor was incapable of diagnosing the problem, however I found a holistic nutritionist who placed me on a special dietary plan to cleanse the body along with digestive enzymes, and soft massage theraphy. After approximately 5 months, I felt well again and the swelling had disappeared.
DNJ
Morristown, NJ United States
-Saturday, July 27, 2002 at 14:01:19 (EST)

Hello. I am 40. Six years ago I was hospitalized with severe swelling and cellulitis in my left leg. Every since then I have had swelling the that leg. It is really a hard trying to find shoes,having people look at your foot. Has anyone heard of any herb or anything that can help reduced the swelling. I take diuretics. Thanks.
Carolyn
Houston, Texas United States
-Monday, July 22, 2002 at 14:26:19 (EST)

This is about my mother, Esther Thorpe from Madison, WI. She has been fighting this desease for many years now. She now is 81 and in a nursing home because her legs are so bad. She is getting extremely large thighs, making walking on those bad legs worse. She is experiencing more congestion in her lungs, is this part of Milroy's? She wants to know the advanced systems, she wants to be prepared.Could someone please answer this so I can relay it to my wonderful Mom. She wants a pin, I had found it once and told her about it, but now I do not know where I found the support pin. Thank you.To all of you, may God Bless and ease your pain and suffering from this horrible desease. Thankyou for listening. Sue Miller
Sue Miller
Madison, WI United States
-Sunday, July 21, 2002 at 13:22:02 (EST)

Sue Miller -Sunday, July 21, 2002 at 13:11:50 (EST)

My Lymphoedema is in my right LEG not arm. Is there anyone out there with tips on how to wrap, rub and begin fittness stretching and training for my leg??
Sky Anderson
Indianapolis, IN United States
-Monday, July 08, 2002 at 08:30:28 (EST)

At the end of May, my mammogram showed a microcalcium deposit in my left breast. My first surgery, something went wrong and they didn't find anything. She removed a handful of tissue with nothing found in it. The second surgery, the doctor took out a small mass that was cancer. Now I am at the state where they want to take out my lympth glands. What does that entail? I know I will have to go through radiation theraphy. What can I expect from the Radiation theraphy?? Thank's for any help you can give me. Nancy
Nancy Budish
Inverness, FL United States
-Thursday, July 04, 2002 at 10:16:22 (EST)

My wife has post mastectomy lympheodema which was a result fro a radical mastectomy on April 20th 1998. The lymphoedema did not appear untill she had a knee surgury in September of that same year. As part of her knee physical theropy she used a walker. About two weeks later she started experiencing swelling in the left arm which is the same side as the mastectomy. We have been trying to gather information on the relationship on if the pressure from using a walker could have excelerated or caused the lympheodema. She continues to feel pain swelling and the musel in her upper arm gets knots the size of a golf ball. We are looking for studies/research, doctors opions, medical association information.
We are also seeking help to help or reduce this condition to keep her out of swelling and pain..
If anyone can, please help...Please feel free to write me back or call me at 732 946 5242 (W) or 732 469 5669.. Thank you...
peter
bridgewater , NJ United States
-Wednesday, July 03, 2002 at 05:16:04 (EST)

6 months ago i had a mastectomy on my left side and of course lymph nodes removed i havent had much time to worry about loosing a breast because i developed lymphoedema in my left arm it's getting on my nerves so bad i feel sick iam grouchy most of the time loosing a breast is bad enough let alone we have to put up wiyh something like this.Ive read a lot about lymphoedema and nothing sounds good yet,why can't they test the lymph nodes while their still in you or put fake ones in or clone us some,ihope they come up with something soon[like in my life time] And i am told iam one of the lucky ones ionly have to take [email protected] a month for 5 yrs.Iam on other medecation for other things also[yes iam very upset]and i know their's so many people that's suffering more than myself.Iprayfor all of us that something better can be done
LU'mora Pendleton
mansfield , ohio United States
-Sunday, June 23, 2002 at 13:41:15 (EST)

Could any-one please let me know were to get super large socks or socks suitable for lymphodema. Thanking you in advance & all have a good day. Bernadette
Bernadette
Wynyard, Tas Australia
-Monday, June 10, 2002 at 07:10:18 (EST)

I have lymphodema in my breast following a biopsy with No glands removed does anyone else have this problem
di croft
Toowoomba, qld Australia
-Thursday, May 16, 2002 at 18:39:14 (EST)

My husband has had "milroys disease" since birth, (hereditary). It causes swelling in the leg and testicles, recently moved to chest. Does anyone out there have ANY info regarding this disease....it's almost unheard of, and we are getting pretty scared as to what may happen. Thank you, if you do.
carrie munz
fort st. james, b.c. Canada
-Friday, April 19, 2002 at 12:06:43 (EST)

Ah, silly me, I should have checked the dates at the top of the message list. Oh well, no one's perfect.
Perrin Mcleod
THAMES, New Zealand
-Wednesday, April 10, 2002 at 20:15:22 (EST)

I'm the one in a thousand feller who had a mastectomy and muscle resection from the rear to fill the gap. First off, why do the messages stop in the year 2000? Has everyone stopped reading this page? Anyway, I'm 58, had all my right arm nodes removed exactly one year ago along with the "breast" and have "the bloody big fat arm" as a reward. At least I'm still alive though. Trying though it can be, it helps to have the soul of Julie Andrewes, just give a little whistle and box on etc (sound of mass puking!)
I really hate my pressure sleeve and wear it as little as possible and find more relief in lying down with my arm raised for an hour or so, or as long as I can get away with. Luckily I am a sickness benficiary (also have diabetes, pig stick for glucose tests three times a day, yuk, whistle, heart problems, slack kidneys, obesity, the list seems endless but I'm cuddly and try not to bite strangers. Love a good barney with door to door missionaries though! The rest of the family know they are MINE and call me, hee hee!
It helps, in my opinion, to maintain a sense of humour, and I do realise that many people out there are far worse off than me and for any kids game enough to read this far, "Keep your chins up, and when the tidal wave comes, we'll float better than all the rest!"
Perrin Mcleod
THAMES, New Zealand
-Wednesday, April 10, 2002 at 20:10:19 (EST)

hi my name is bonnie . my son is 3 has had le since birth still not diagnosed . just went to third genetic doctor. she said his le affects every part of his body. but its like how does it end. it doesnt. his swelling went down considerably so no wrapping

bonnie
pt pl bch, nj -Thursday, March 28, 2002 at 15:14:54 (EST)

I have mild lymphedema in right arm (i'm right handed)had mastectomy and node removal...have any of you see www.lymphaticresearch.org...this site seems like they may be interested in finding new ways to help.....
syl
elgin, ill United States
-Wednesday, March 27, 2002 at 05:00:16 (EST)

Following lymph node removal in 1998 I now get
swelling in the right arm .This together with the fibrosis in the area graetly reduces mobility.I have had massage and compression sleeves with some success but the swelling always returns with hot weather and physical activity.I am looking into the laser treatment being trialled in Adelaide S.A.
lindsay townsend
sydney, nsw Australia
-Wednesday, March 20, 2002 at 12:39:42 (EST)

My name is david and i am only currently 12 and have developed primary lymphedema in my right foot/ankle i have been misdiagnosed 2 times could anyone e-mail me and tell me what a life of this is like thanks you in advance
david
baltimore, United States
-Monday, March 18, 2002 at 11:45:38 (EST)

As I read these messages my heart goes out to fellow sufferers. I am 65 years old, quite heavy
and have lymphedema in both legs. I was diagnosed only a couple of years ago but I must have had the problem for years. About 18 months ago I started massage and bandaging therapy with a young woman that had very good training in this area, and best of all, she was able to treat me in my home. After a few months she had my legs in pretty good shape, and I was to continue to treat myself. I aquired Reid Sleeves and compression stockings (some job getting the insurance co. to pay for that stuff), and with my wife helping me massage, things were OK for a while. Then, being human, and faced with the grim job of wrestling with the Reid Sleeves, seeing my wife burning out on the massage, keeping the stockings up (there's a product called IT STAYS that helps) and all the depressing rest of it, I soon was only using the stockings. Lately, the swelling has started to come back much stronger than the first time, and I can't walk a city block without stopping twice and being in pain. I am about to start therapy sessions at New York University Med. Center, which is about 30 miles away but takes 1 1/2 hrs. or more to get there, given rush hour traffic and construction sites. I'll report back on how that goes. Meanwhile, I'd like to read something from other MEN with the condition, and how they are coping.
Martin Quint
Long Beach, NY United States
-Sunday, March 17, 2002 at 09:54:40 (EST)

I have severe lymphedema in legs, very severe in one thigh. I wasn't accepted for a therapy program as I am not "ambulatory". I am to see surgeon in 2 days for removal of 50-75 lbs of one thigh. Has anyone had an surgical removal and if so, how did it go? If you have something to share, I'll check back here. You can also e-mail me. It developed after cellulitis. 2 1/2 years ago I was paralyzed from Guillian Barre` (GBS) so I've had my share. Wish me luck.....
Roberta
Long Island, NY United States
-Wednesday, February 27, 2002 at 10:28:58 (EST)

Hello all- I was wondering if anyone has the experience of "abdominal lymphadema" after having a bilateral TRAM Flap?? I have been suffering from this swelling/pain since my surgery in Jan of 2001. Any help sure would be appreciated, as of May 2001- the last time I saw my plastic surgeon, she said this swelling wasn't due to the TRAM.. I'm sure thinking she's wrong, but have an appt with her in a couple of weeks. I'd like to go "armed for Bear!!" Thanks again, Linda
Linda Gonser
Newport, Wa United States
-Wednesday, February 27, 2002 at 06:31:37 (EST)

I am 12 years post modified radical mastectomy with reconstruction. Have not experienced any lymphpedema and would like to know if anyone in similar circumstances has any info about the muscle stimulators being widley sold on tv. I would like to use one to assist in firming the flab on my over sixty arms. Do I run any risk?
Lea
Santa Cruz, CA United States
-Monday, February 25, 2002 at 15:32:12 (EST)

I've made two email friends through this site and knowing they are out there when I feel tired of my left leg is really good. Oddly, I find that if I'm upset about something to do with work or the funny community I live in, I start limping slightly, then inevitably somebody says'how are you?' and I say something like,'Terrible, how are you?'Then they notice my psychological limp and say 'You're limping,'as if I hadn't noticed, and they decide I'm humping about the place all moody and dark because something has happened to my foot. I've never found the right answer to the 'you're limping statement, it could be something like, 'well spotted!'or 'no kidding, I hadn't noticed.'
I noticed how many the messages mentioned that the the person with lymphoedema was working, maybe standing up for long periods of time. I live in the UK where we get long, and to me now, cherished months of coldness, but then summer comes and out come the men in funny shorts and all that. Well last year I got the lympho nurse to write me a letter explaining about cellulitis and lympho and I gave this to my boss.I did this because the place I work in has the English 'going on a sicky'culture,this means no-one is likely to believe me when I say, 'Sorry, too hot to come into work, today.'I mean, are we officially disabled or not? I should ask at the clinic, I suppose. But with equal opportunities policies being the latest thing over here, it would be quite hard for a boss to object, if you'd already informed him/her in a letter. Well, that's if you can bear people knowing about it. Anyway I hope that tip is useful to some of you. All depends on the boss I suppose, but I know mine will not be able to object.
Jilly Lloyd
London, United Kingdom
-Sunday, February 03, 2002 at 00:01:47 (EST)

hi my mum has been a diabetic for 2 years she had a funny turn of feeling unwell and went to bed 1 day later she developed a red and hot feeling in her lower leg and was generally unwell my dad is 74 so he got the doctor out with her being a diabetic the doctor gave her a very strong antibiotic and left
i went to see her and felt it had got worse and told my dad to get the doctor back when he phoned the doc said give the antibiotics time to work by this time the swelling had trippled and she was not well the next day her own doc came out and said the hospital trip was up to my mum which i think he should have done there and then
i have 4 kids so when i went down and saw how it had spread i was gobsmacked and told my dad to get an ambulance she has just spent the worst 11 days of her life in hospital and has been diagnosed with cellulitus and it will be 3 months before we will see a difference she is not allowed up stairs she has a commode and bed frame the nurses are coming each day as she has several open wounds where the tissue nurse has had to pop her blisters and is in a lot of pain
i just think with her being a diabetic and with the state of her leg shouldnt the doctors have had her in at the beggining and this could have been avoided anyone who can give me information please e-mail me
jeanette almond
leyland, lan United Kingdom
-Friday, January 25, 2002 at 09:39:00 (EST)

I have lymphoedema in the right arm following a lumpectomy, wear a compression sleeve and follow an exercise program. Am planning a trip to Europe in the near future involving a very long flight and coach travel and wondered if anyone has any travel tips that might be useful in the circumstances.
Cath
Werrington, NSW Australia
-Tuesday, January 22, 2002 at 11:22:52 (EST)

Hello my name is Lisa,i'm 32 and have had lymphoedema since i was eight, i would really like to hear from anyone my age or anyone really, to exchange our stories with living with lymphoedma through the best part of our lives.... i feel it was and still is hard to live with it, on a social level, some people just cant help but be rude....thank you Lisa
Lisa
Melbourne, Vic Australia
-Tuesday, January 15, 2002 at 23:07:42 (EST)

Hi, My son developed lymphedemia after his 2nd vaccination, we were told even a bee sting or similar would have brought it on. now nearly a year old now our problem is where to get shoes to fit his left foot which is swollen from toes to his hip. has been hospitalised with this condition, but the only thing we find that helps is rubbing emulsifing ointment into the affected area or any dry area as my son seems to have an itchy area on his leg he scratches when under stress. If allowed this area would bleed from scratching like eczema, but by moisturing it seems to ease the problem. does any one know do shops cater for footwear with this problem,looking forward to hearing from anyone with same problem....
gen
KILDARE, Ireland
-Saturday, January 12, 2002 at 09:27:33 (EST)

Hello Fellow Sufferers,
I'm a newcomer to this unfortunate condition. A year ago (almost to the day) I was outside, barefoot, hanging out the washing and felt a sharp sting under my right foot, I thought I'd trod on a thorn or been stung by something, but couldn't see anything. As there was no residual pain I forgot about it until sometime later when small blisters began to appear and this was followed sometime later by excruciating pain, swelling and redness which started in my foot and continued to creep up my leg. I had treatment by a doctor and eventually after a number of weeks it disappeared and went back to normal. Six months later I went with a group of ladies(breast cancer) for lymphoedema therapy, although I was not suffering from it, it seemed like fun - gentle exercise, meditation and aquarobics in a heated pool. Ironically, this was what actually set it off - I only wish we had the wisdom of hindsight before the event! I've realised now that one of the worst things one can do is go into a heated pool and exercise because the vascular system swells and causes constriction for the lymphatic system and puts it under pressure. Obviously it was a number of contributing factors - primary, radiotherapy, spider bite and then the hot swimming pool was the final straw.
I intend to go swimming in the cold ocean pool at my little seaside village shortly, as soon as I get some time to myself - the weather has certainly been co-operative in that respect - trouble is my right leg looks hideous and I'm quite embarrassed to be seen in public. I never did have nice legs anyway, but now it's even worse.
Anyway,as Abraham Lincoln said "Most folks are as happy as they make up their minds to be", so I always keep that in mind and try to stay happy!
Take care of yourself and those you love.

Moira
Gerringong. , N.S.W. Australia
-Thursday, January 10, 2002 at 09:50:40 (EST)

I was diagnosed with having lymphoedema precox (right leg) at the age of 11. I am now 24 years, the lymphoedema left my right leg, but returned to my left leg. I have lived with this for 13 years now. I know the frustrations of having lymphoedema. Now though thanks to research and my general health physician I will begin manual lymph drainage. I am now praying that eventually I can wear a short dress and not have people ask "What is wrong your leg?"
To any young person who has this disease, you must be willing to accept the fact that you may live with this for the rest of your life. However know that treatment is available to help you through this.
Izola
Cairo, IL United States
-Saturday, January 05, 2002 at 06:41:10 (EST)

Hi Marci - I have had lymphoedema in my right leg for over 30 years. Last year I went to a meeting held at our local health care unit regarding lymphoedema. I was very encourage and made an appointment right away. I saw the physcial therapist and started the program using the the lymphastic massage treatment, wrapping my leg (at all times) and eventually being fit for a Electrolux stocking. My leg went down in size considerably considering I have had it for so long. Because my therapist was local, I was able to go everyday for about two hours, of which she did the massage, pumped my leg and then wrapped it. No pain involved and my leg feels 100% better. My leg is not down to the size of the left leg, but is much smaller than before I started. I never used to wear a dress and had a hard time finding pants that would fit the leg. Now I am wearing long skirts and can actually find jeans that will go on my leg. If you would like to know more, please let me know. I highly recommend it to anyone with lymphoedema, no matter how bad they are swelled. Thanks
Dawn
Oshkosh, WI United States
-Friday, January 04, 2002 at 09:26:14 (EST)

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Lymphoedema Support Group of NSW
Articles, news contributions - Liane O'Brien, Physiotherapy Dept. St. George Hospital,
Gray St. Kogarah NSW 2217, Fax: (02) 9350 3075 Support - Barbara Smith, 9402 5625
Membership - $10 to Box 58, Wahroonga NSW 2076

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