Lymphedema Support Group

hi, my name is Monica and I just joined today. I would like some information or advice about lymphadema. I just started with all this in April and the last few months have been hard. Any advice would be appreciated.

I have support stockings which dig into my skin around my ankles.....what else can I do for relief?

Are you doing the massages? They do help to relieve some of the pressure. I have been dealing with this a long time finally found a doctor who could tell me what I had in 2001.

I did them for a week and a half......would a regular massage therapy do that or does it have to be a licensed massage therapist who specializes in lymphadema?

Today wasn't so bad with the swelling but I seem to have more problems when I am at work and on my feet for 12 hrs.

Thanks for the support!

my therapist thought my husband how to give me the massages. If you are married or have a partner that is one option.

Hi Monica, welcome to the group Nanc is right about the massages, they do help. I've had le for almost 6 years now (from below the breast to the knees), and I find that massage is essential in keeping the swelling down. I also sleep with my bed on a little gentle tilt so that gravity can help drain it too. (I have a 2" block of wood, with the middle hollowed a little so that it doesn't slip, under both of the legs of the footboard) I find that does make a difference for me, yet it's not such a rise that it's noticable to me and disturb my sleep.

I find that when I sit for too long (like at the computer) that I will swell more. So what I do when I have to put in desk time is I have a padded footstool under my desk so that my legs are a little more elevated, it helps more than it does when I don't use it. Also, if you can, every 15 or 20 minutes get up and walk around just a little bit to keep the circulation moving good. I swell if I walk to much, or if I sit too much, so I try and keep it alternating.

I swell every day from the chest down. (I wear skinny jeans in the morning, and sometimes by evening it's sweat pants or mumu dress hahaha. I find that with the elevation of the bed, lymph massages (to fascilitate better lymph flow) and alternate my activities I can keep it in better control. I'm supposed to wear Juzo's too, but I can't afford them. I had to give up working with Visiting Nurse after my cancers, so I'm not able to be insured, so I can't get those precious stockings! Looking for an alternative, I buy strong support hose. Since you're a nurse and on your feet probably all day, maybe these might help? When I did wear those other stockings, like you, I found that they cut into the skin too much, and they were absolutely unbearable to wear. What I did was to take thin foam and cut it to a shape and inserted it inbetween my skin and the stocking, and it didn't seem to be as uncomfortable. (By thin I'm talking only 1/8 to 1/4 inch thick)

I'm glad you're off the diuretics. That atrial fib must have been scary for you! From what I've read and been told, diuretics do not help with reducing lymph fluid...regular edema, yes, but not lymph. Lymphedema is one of those things that it seems most Drs are not up to speed on (I know when I was in nursing school it was hardly mentioned.) It's one of those things where you really have to be your own advocate. Read, read, read...do searches on the internet for anything on it. The biggest help I ever got was from an online support group, having lived with the condition for many years and reading about their experiences, I got more knowledge and insight than any of the Dr's I've been sent to could give me. Bless you too! I hope this short novel helped a little lol.

I too have to change around my activities I do about 20 minutes at a time 20 on computer, 20 walking around and then set with my legs elevated for about 20 to 30 minutes. I also had to give up working due to the swelling and the pain for it. I am now on disability. Do either of you find steps almost impossible now.

I also agree the doctors are not much help the more you talk to people who have this the more you learn about it.

Yes, I have a great deal of trouble lots of times with steps. Now I just mainly avoid them unless I have to use them. (Big change for me since I used to jog 2 miles, and run up and down steps just for the exercise of it lol) To be honest though, I'm not sure if it's because of the le, venous insufficiency, or the rheum. arthritis. For the first couple of years, when I only had the le, there were times though that I felt like I was wading in deep water (you know how you try to walk and the weight of the water makes it harder and slower?) That's what it felt like anyways. I still get that, but now it's more like my legs are just exhausted. I'm glad you qualified for disability Nanc, I'm just now going through it all and am keeping my fingers crossed. I walk with a cane and have for the past few years.

I do not use a cane but we are thinking of a wheelchair so I can go shopping with my hubby. Some of the stores do not have the ridables that we go to and those that do some of them are so uncomfortalbe.

Nanc: It's nice that so many more stores are having those rideables anymore. I can see why some of them don't...the aisles are far too narrow or cluttered with merchandise lol. That'd be nice if you could get one and just keep it in the trunk. Too bad you don't live around here, I've one I'd lend you. I kept it after all my elderly relatives used it and now I lend it out when somebody in the neighborhood temporarily needs one. I know going to stores just totally exhausts me and my legs. The cane helps, but there have been times my daughter has tried to get me to use one of those rideable carts. Hope you're having a good day! Joy

Yeah it is nice and would be a lot nicer if they were not always out of order lol. I understand about the isles in the stores, that drives me crazy and did even when I did not have this, lol. I also hope you are fine.