New Here, Lots o' Questions

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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New Here, Lots o' Questions

Postby pinkelephant5 » Tue May 10, 2011 11:27 am

Hello everybody! It's been really useful reading through these forums. I'm a 20 year old student having a hard time getting used to my lymphedema. A few months ago, I was diagnosed with lymphedema in my entire right leg (doctors aren't sure if it's primary or secondary). I was lucky in that my lymphedema was diagnosed before it got really bad-- my legs are only 4-7 cm different in circumference (less near the ankle, more at the top of the thigh). I'm a very healthy weight for my height and I am pretty active.

I started seeing a really nice OT, and am currently supposed to wear my bandages 24 hours a day for about a month, until she decides it's time for me to move to stockings during the day and bandages at night. I have a gauzey sleeve on my upper and lower leg as a base layer and a layer of padding behind my knee, followed by a total of six bandages. I have a few questions for all of you lymphedema veterans:

- How do you sleep with your bandages on? I keep waking up in the middle of the night with a number of problems: intense itchiness, pain behind my knee, my toes asleep, pain in my knee, etc. Do you guys wrap loosely before bed? Are there some brands that are less itchy than others?

- I feel like the bandages are working well on my calf, but I can't get good compression on my upper leg and ankle. The bandages ride down my leg over the course of the day, even if I wear a tight layer over the top. Do you find that tighter or looser bandaging helps them stay up better?

- When my leg is having a bad day and is more swollen, I often wonder whether I should exercise. Do you find it helpful to exercise when your lymphedema is acting up, or more helpful to wrap it up and stay off your feet?

- What brands of stockings have you found to be most effective and comfortable? Right after I was diagnosed, I tried both Sigvaris and Jobst. The Jobst stockings really pinched my waist. I had two pairs of black Sigvaris stockings that were really comfortable, but two beige pairs that pinched a lot behind the knee, aggravating my leg and decreasing my circulation. I would prefer sheer stockings over opaque ones as I am relatively young and like to pretend that I can still wear bare legs with my shorts and dresses. What brands have enough compression (30-40 mg and up for me) in sheer stockings?


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Re: New Here, Lots o' Questions

Postby patoco » Wed May 11, 2011 7:55 am

Hi Kati

Super welcome to our family here :!: :)

Surprisingly, there are a lot of therapists and patients who do not wear the bandages at night because of the very things you talk about. They will wear some type of compression garment or compression sleeve, Have you heard of these?

I wear the bandages myself. Sometimes, the "way" you wrap can help make a difference on the way the bandages stay s night.

I have kind of a "criss/cross" pattern that does help.

The upper part is a nightmare for all of us. Some people have had good luck using something called "It stays" - But, I too have to rewrap several times a day. I've been told that what happens is that the bandages actually make the swelling go down and that is why they slip down. Frankly, I'm not to sure on that.

BTW, is that OT certified in lymphedema treatment?

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Re: New Here, Lots o' Questions

Postby LymphedemaGirl » Sat May 14, 2011 5:52 am

Hi there,
I sometimes have to get up during the night and take the whole thing off because I have wrapped it too tight and my toes go to sleep or I feel painful pressure on the bones/bunions on the sides of the forefoot. Some wrapping sessions are better than others, and I am much better at wrapping now than I was in the beginning. It is important that you bend your foot/ankle as much as you can when wrapping. I feel that when I take extra care to do that, the chances of success is bigger.
About the itchyness, do you wear tubegaze and cotton for padding under the bandages themselves? I do, and I use Rosidal shortstretch bandages. For washing the bandages I use mild shampoo or detergent without perfume, and I don't use softener. That might have something to say reg. the itchyness.

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