Lymphedema Support Group

Lymphedema is a condition of localized fluid retention caused by a compromised lymphatic system. The lymphatic system (often referred to as the body's "second" circulatory system) collects and filters the interstitial fluid of the body. Lymphedema has been barely recognized as being a serious health problem; however, this is slowly changing due to education and awareness.

0 Online
0 Online

Primary Lymphedema help

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.

Replies

deleted_user
deleted_user

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.
deleted_user
deleted_user

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.
deleted_user
deleted_user

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.
deleted_user
deleted_user

For some good advice and help go to

http;//www.lymphadvice.com/lymphedema.html
deleted_user
deleted_user

Sorry, the link I posted previously was incorrect. Here it is again;

http://www.lymphadvice.com/lymphedema.html
Annery
Annery

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
deleted_user
deleted_user

Annery, MLD therapy works wonders. Have you had this treatment? They have all kinds of tricks to soften tissue.
deleted_user
deleted_user

I was just wondering what "MLD" stands for. What type of therapy is this?
deleted_user
deleted_user

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.
deleted_user
deleted_user

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
deleted_user
deleted_user

I have had Primary LE in both legs for 29 of my 41 years. I believe that a hysterectomy in early 2010 impacted my LE further and have still had stomach swelling periodically. Am trying to find a specialist for such a thing as I am having symptomatology (restless legs, numbness, tingling) and doctors are trying to tell me it's Fibro.

I don't know if you were lucky enough to escape any other characteristics of the disease, but I have the narrowing of the cervical spine, the double row of eyelashes (distichiasis) and was born with one solitary left kidney. (All characteristics some LE patients have).

I am searching now for someone that may be able to help me discover if my LE is progressing. It is very frustrating and I feel your pain.

The wrapping being referred to can be done by any pratitioner of manual lymph drainage and basically involves compression after Manual Lymph drainage. While I might "blessed" with all the quirks, my swelling in the legs is very nominal.

Big Hugs,
Donna
dsf95
dsf95

I just wanted to say how much my three wheeled bike has helped me. I was not even able to fit in stockings last summer and got down with lymphedema therapy and wrapping. I think I got near 400 lbs. I have lost about 125 lbs! My three wheeled bike, back and foot massager have really, really helped. It's still a struggle, but I know I can make progress now.
deleted_user
deleted_user

I have just met a young woman with extreme lymphedema of one leg. Started at birth. She also has swelling in the opposite arm. I had never seen this before and wonder if anyone out there has primary affecting the arms. This seems so strange and as a therapist I am wondering what else may be wrong. After all most doctors know little about this condition and I figured best place for info might be here.
deleted_user
deleted_user

Hello mynameist,

I also have primary lymphedema, I've had it for 24 years now (since I was 14). I live in Canada, and have no idea where to go to get treatment, plus I'm unemployed right now, so I wouldn't be able to afford treatment anyways.

Like you, my doctor also shrugs it off, and just tells me to wear compression stockings, but in this summer heat they just make the swelling worse. Like you, I have struggled with my self-esteem and depression (on-and-off) since the day my lymphedema came on.

I'm fortunate that my lymphadema is mild and the swelling stops just above my ankles (so I have no troubling fitting into shoes and pants and excercising is easy for me), but, with the summer heat my feet blow up like balloons, which has got me depressed again.

I think the only advice I can give is to exercise (if possible): light walking, swimming, biking, and jumping on a rebounder really helps to pump the lymph fluids and eating healthy.
deleted_user
deleted_user

At the age of 12 my right foot swelled inexplicably. I was lucky enough to land a pediatrician who specialized in unique diseases (of all the things to specialize in) and knew within minutes what I had. At the age of 16 my left foot joined the party. I am now 41. I do have swelling from the knees down and since an emergency hysterectomy last year, I now have swelling at the middle that at least graciously goes down overnight. I never thought that, while I had to have the hysterectomy, it would have such an impact on my lymphedema. I'm guessing because there is a major portal of lymph nodes at the groin, cutting in that area did not help. My feet have become somewhat fibrotic as the swelling never truly goes away, it just goes down. I am blessed to not need stocking unless it is superhot or I am travelling by plane. Qutie frankly, I hate them but they are a necessarily evil.

And, as most LE patients know, blood poisoning and cellulitis can happen just by thinking about it. Blech! I have had numerous bouts of both in my 30 years of having this crapshoot of a disease. At least I can be thankful I have feet.