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Advice:
Primary Lymphedema help
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Does anyone here have primary lymphedema? I do, and have had it for over thirty years. Im 52 years now, and it is really started to affect the quality of life, and has been a major factor in myself needing a complete knee replacement in three months.
It annoys me, because when I first heard I had lymphedema, there was no internet. I went to the local library and it sounded like I was to become the "elephant man". Over the years, it came and went, came and went. And then five years ago we were on flight to Cancun, and my lefts and feet blew up like balloons. Couldn't wear shoes,couldn't wear pants, as they were too night around the very swollen knee and leg, and just the self-esteem loss is enough to make you cry. But what really bothered me is that my movements were very restricted, and I simply couldn't walk much or enjoy things.

It's never gone away since then. And still no help from doctors. I now wear Support Stockings, which I found out are a MUST for air travel. I didn't know that before. But I still feel lost. I've heard on the internet that there is wrapping? a lymph pump?

My doctor knows very little and mostly shrugs it off.
Any advice would be very welcome. And anyone else with Primary Lymphedema that would like to share their story with me would be great! I've never met anyone else with lymphedema.
Posted on 02/13/09, 12:48 am
22 Replies | Most Recent Add Your Advice
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Advice:
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Reply #1 - 02/14/09  12:45am
" My lymphedema is secondary, though the symptoms and treatment are the same for both. I've heard that it's easier to treat primary lymphedema because secondary may have scar tissue from surgery which causes more obstruction to the lymph flow. Primary lymphedema, I understand, involves lymph channels that may not be adequate to carry off the lymph fluid properly so that it can eventually be eliminated through the kidneys. I would strongly suggest that you put yourself in touch with a certified MLD (manual lymph drainage) therapist who will perform lymphatic massage on the limbs affected and then wrap the limbs in short stretch bandages. This is done three to five times a week until the legs approach a more normal size. The therapist will then measure you for compression garments to maintain the reduction. There are also special garments used to sleep in to maintain the reduction when the stockings are removed at nighttime. In addition, there's a wonderful machine called the Flexitouch which mimics lymphatic massage which may also be ordered. There is light at the end of the tunnel. You just need to align yourself with good care. Many physicians are not familiar with lymphedema and patients wait far longer than necessary to get started on the only treatment that really works for this condition. There is an organization called the National Lymphedema Network. Their website is www.lymphnet.org. They publish a quarterly newsletter & have all the latest on lymphedema treatment. I assume that you live in the USA. I'd be happy to check my NLN newsletter to give you names & addresses of professionals in your state who are certified to do this treatment if you tell me your state. All the best to you. I'd be happy to help with any information I can provide. You'll be pleasantly surprised with the improvement that can be made. "
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Reply #2 - 03/25/09  7:08pm
" I have it to. Also for 30 years. I live in the country and the doctor said there is no cure. I am surfing the internet my self to see what I can find out. Past 3 to 4 months I have seen a marked change in my legs and pain. I am walking and refuse to use a electric cart. I feel in my heart if I listen to the doc and stay in the bed at all times with my feet up I will die from a blood clot. I feel I need to keep my blood circulating. I was told I had Primary Lymphedemia. Every step I take hurts. Alieve helps me. I always get thrombosis and take IBprophen for it. Its embarrassing for me . People stare at my huge legs. One sweet sweet lady told her 5 year old. Honey her legs are sick. I loved that. Good luck in your reseach also. Sometimes what hurts is not when kids stare but when adults stare and if you are getting a bite to eat they look your way with a discusting look and shake thier heads and you kinds die inside. When its time to grocery shop I sit in my car for 5 or ten minutes before I go in the store. Its like taking medicine for me to get out in public. I am sure its my own thoughts more than what people are thinking. See I do not know how others like me are either. But right now mt ankles are so filled out and swelled I can not rotate my foot up and down. My ankle is resting on my foot. Since I am in Houston I thought maybe a doctor down here might know how to help me. I am on Social Security but I want to go to school Maybe at home on the computer. and get off of social security. I feel if people can work and have no arms and legs I know I could my brain works pretty good lol except for my spelling. No you are not alone. in this. "
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Reply #3 - 04/26/09  6:51pm
" I have primary lymphedema and i was given steriods. I blew up to over 500 lbs. I research lyphedema myself, found a lymphedema clinic in my area. There is hope. Go to www.nln.com and lymphnet.org and you can find a therapist in your area that can do the bandaging for you, but you will need someone to help you bandage when you are at home. Exercise is is a big part to, especially in the water. My legs have gone down, I'm walking better and so far I have lost 150 lbs. So there is hope. I hope this helps. "
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Reply #4 - 06/03/09  9:01pm
" For some good advice and help go to

http;//www.lymphadvice.com/lymphedema.html "
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Reply #5 - 06/03/09  9:04pm
" Sorry, the link I posted previously was incorrect. Here it is again;

http://www.lymphadvice.com/lymphede... "
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Reply #6 - 06/04/09  8:31am
" HI all

I also suffer from primary lympedema of both feet for the past 12 years. Is anyone experiencing hardening of the tissue? My right foot is not pitting anymore it is just hard, do you think it can be reversed?
Thank you "
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Reply #7 - 06/06/09  8:54am
" Annery, MLD therapy works wonders. Have you had this treatment? They have all kinds of tricks to soften tissue. "
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Reply #8 - 06/07/09  3:22pm
" I was just wondering what "MLD" stands for. What type of therapy is this? "
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Reply #9 - 06/10/09  3:40am
" I have primary lymphedema. I was born with no lymph nodes in one leg and very fee in the other. It definitely has affected my quality of life more as I am getting older. I had two serious bouts of cellulitis in the past year. They had me on IV antibiotics for three works when the last infection came. The swelling no longer goes down even with the compression stocking on and the doctor just recently told me he was having a very difficult time finding a pulse in the one leg. This mean more tests and more treatments I guess. Not sure really at this point. "
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Reply #10 - 06/14/09  3:25pm
" HI Dragonlady. That must be scary. I wish I had advice, but I'm just learning about lymphedema, because like you, it is gettng worse as I age.
I am going for an operation in 10 days for a total knee replacement on my left knee. I am only 51. I tore my meniscus cartlidge, and having lymphedema really restricted any type of healing. So now I have to have this done. Apparently blood clots are a "real" concern with knee replacement surgery, more so than most other operations. Plus the lymphedema just adds to the risk factor, and one more factor: I had a sister who died 20 years ago, when she was 51(same age as me) in the hospital after an operation. The reason - a blood clot. I'm trying not to dwell on that, but I'm scared.

Is your doctor really familiar with dema? Do you think you are receiving good care for it?
I wish you well, and please kep us posted on how things work out "

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