LE in both legs

[wyvernlady]

I have been diagnosed with this disease since 2005 and am having a very bad time of it. Despite my attempts at the MLD and wrapping, my legs are really swollen and red. The skin is getting hard too. I have just begun seeing a therapist in my area and have been to her twice. This is my 3rd round of Lymphedema therapy. I have been approved for 16 visits. Quite frankly, I feel like I'm walking on 2 balloons. My lower legs are so misshapen, I don't know how they'll ever get back to normal. I was doing quite well for some time but now that it's left up to me to do self care, it seems as if I'll never get the hang of it. I've read books, articles and searched online but when it comes to putting it into practice, I'm definitely doing something wrong or my legs wouldn't be so swollen and red. Usually I don't whine about my disease because it doesn't do any good anyway. It doesn't change the fact that it's always there. Guess I just needed an outlet for my frustrations. Any suggestions as to what I'm doing wrong or anything of that nature would be welcome.

[NikkiO]

Hello,
I am new to this forum but have had primary LE for over ten years. I have it only in my left leg, toes to thigh. I'm not a physician or a therapist but can offer a few suggestions as well as words of encouragement. It is quite alright to be frustrated. First, be sure to conduct the MLD ( manual lymph drainage) massage every morning and evening. It seems like a lot but will eventually become part of your daily routine. If you have been prescribed compression stockings, do wear them daily but be sure to take them off each night while you sleep. It is quite frustrating to put them on but the swelling is much worse without them. I try to keep my skin moisturized by using a non-scented lotion such as Eucerin. Also, I sleep with my leg elevated every night and now find it uncomfortable to sleep without at least two pillows under my leg. If you are a stomach sleeper, it may be an adjustment but is well worth it when you wake and find the swelling has decreased. Your diet is also very important. I find salty and spicy foods tend to aggravate my LE. Also, remember you are not alone in this. My consolation is that even if I have a bum leg, at least I have two legs. Best wishes

[thanks4help]

Dear LE in both legs,

Like the other respondent, I have had LE in my left leg for almost 11 years. LE is terrible affliction that receives very little attention from the medical community, and the general public has little, if any, knowledge about the condition. For all of us who suffer, it sucks.

Now that my pitty party is over, I will share a few items that have worked for me. First, wear compression whenever your legs are not elevated. I have found alternating compression stockings and wrapping reduces swelling. I layer compression. Until recently, this was my "dirty little secret", but it was the only way I could keep the swelling under control. I feel comfortable sharing my "secret" because I am now under the care of a great therapist and she approved. Just make sure you're not creating too much compression. If it hurts or you feel numbness, it's too tight; take it off immediaitely. Listen to your legs. I am using a combo of worn and new hose, knee highs when needed, Spanx and 3/4 length bike pants.

Secondly, I again agree with the other respondent. Sleep with your legs elevated as much as possible. The more angle the better. If I could sleep like a bat I would do it!

I have some other ideas that might help, but I don't want to come across as a know it all. I have made most, if not all, the mistakes a patient can make, so I guess I am an authority on what not to do.

If you reply, please let me know: Do you have a pump? What kind and are you using it? Do you have a therapist, doctor, etc?

I just keep reminding myself, "the only way we're guarenteed to loose is if we quit." So prop up those legs and get a good nights sleep!

FYI: Please don't be offended if I don't respond immediately. I only check e-mails and in-boxes once or twice a week.

Wishing you health and happiness!

[LymphedemaGirl]

Hi there, just a suggestion, perhaps it is worth looking into a nightgarment, it is like a soft, tight boot you put on and wear throughout the night. It massages and softens the tissue so the daytime compression can do its job even better. Personally I am waiting for approval on a Jovipak nightgarment, I have high hopes as I have heard about a few which has seen great improvements with this garment. There are other nightgarments too.