Lower body lymphedema
Debra,
You asked about lymphedema in your legs. I have it, and will tell you
what I’ve been doing to control it.
There are many reasons why people get it: from birth, from injury,
surgery, or even genetics. My mother had what she called "fat feet"
and over time I’ve developed them too.
One doctor I had looked at my legs and feet and told me his office had
been visited by a lymphedema specialist just the week before, and he
thought that’s what I had. He said that I should see a physical
therapist who specializes in lymphedema, and could find one by calling
the oncology department of a hospital. Since many women who have had
breast cancer surgery develop lymphedema, the oncologists have names of
people who can help.
I called around and asked for a PT who not only specialized in LE
treatment, but lower body LE. I chose a wonderful woman (in Portland
OR) who educated and treated me.
She started with an interview and measuring my feet and lower legs to
the knee, at various locations up my leg. She told me to get stockings
made (I had to go custom) for the measurements I had at the time, and
we would get more made as my legs/feet got smaller. I chose Jobst
stockings because I could get heavier fabric (my finger went through
the Juzo fabric) and I could get a custom wider band at the top,
contracture seam in the front of the ankle (so it doesn’t wrinkle).
For treatment, she said I should take exquisite care of my skin, using
Cetaphil lotion or Eucerin lotion every day. She showed me an exercise
to do while I had my stockings on that would increase circulation to
my legs and feet. And she did lymph drainage massage on me and wrapped
my lower leg and foot in a series of bandages. She said we would work
on one leg at a time so as not to overload my lymph system.
The massage is pleasant and light. It starts up at the collar bones
and moves down the side of the body to the leg. I won’t go into the
whole thing, but it makes sense to drain the upper body so the lymph
in the lower body has somewhere to go.
She also showed my husband how to do the massage and bandage my leg.
It’s not a fast process, and it really helps to have someone at home
to help with it.
Little by little, my leg and foot got smaller. I ordered smaller
stockings and was thrilled the day my PT said she could feel the bone
in the top of my foot. It took about three weeks from start to finish
on each leg. I saw her twice a week and my husband did the massage and
wrapping the other five days.
I have been wearing stockings every day (it helps to put them on first
thing in the morning when your legs are smallest) for the last five
years or so and that really helps keep the lymphedema in check.
I hope this helps.
February 25th, 2003 at 3:23 am
This helps a lot. One question though - the message - is it something like
regular massage or something more painful. Since it requires special
training it made me wonder what they do. Everyone who has mentioned it has
been a bit vague about what is done.
Debra
Debra,
You asked about lymphedema in your legs. I have it, and will tell you
what I’ve been doing to control it.
There are many reasons why people get it: from birth, from injury,
surgery, or even genetics. My mother had what she called "fat feet"
and over time I’ve developed them too.
One doctor I had looked at my legs and feet and told me his office had
been visited by a lymphedema specialist just the week before, and he
thought that’s what I had. He said that I should see a physical
therapist who specializes in lymphedema, and could find one by calling
the oncology department of a hospital. Since many women who have had
breast cancer surgery develop lymphedema, the oncologists have names of
people who can help.
I called around and asked for a PT who not only specialized in LE
treatment, but lower body LE. I chose a wonderful woman (in Portland
OR) who educated and treated me.
She started with an interview and measuring my feet and lower legs to
the knee, at various locations up my leg. She told me to get stockings
made (I had to go custom) for the measurements I had at the time, and
we would get more made as my legs/feet got smaller. I chose Jobst
stockings because I could get heavier fabric (my finger went through
the Juzo fabric) and I could get a custom wider band at the top,
contracture seam in the front of the ankle (so it doesn’t wrinkle).
For treatment, she said I should take exquisite care of my skin, using
Cetaphil lotion or Eucerin lotion every day. She showed me an exercise
to do while I had my stockings on that would increase circulation to
my legs and feet. And she did lymph drainage massage on me and wrapped
my lower leg and foot in a series of bandages. She said we would work
on one leg at a time so as not to overload my lymph system.
February 25th, 2003 at 7:26 am
No, the massage isn’t painful at all. It’s very light, since the lymph
drainage system is right underneath the skin. It’s very relaxing. BTW,
I’m a Licensed Massage Therapist - this type of massage is very
different than Swedish, and VERY different than deep tissue massage.
Here’s a link to one description of the pressure:
February 25th, 2003 at 11:59 am
Great - I’ll go check it out.
No, the massage isn’t painful at all. It’s very light, since the lymph
drainage system is right underneath the skin. It’s very relaxing. BTW,
I’m a Licensed Massage Therapist - this type of massage is very
different than Swedish, and VERY different than deep tissue massage.
Here’s a link to one description of the pressure:
Anything posted in this group is the opinion of the person who posted it.
February 25th, 2003 at 4:02 pm
I started getting swollen feet before I was diagnosed with diabetes. I
was on a four-month bicycle excursion from Michigan to Seattle. My
feet started swelling, and my health pretty well tanked in general.
Among other things, I started having trouble sleeping. My doctor put
me on diuretics for the swelling, which worked at the time.
This was the beginning of my sleep apnea phase, and due to unemployment
I spent about two years as a sleep-deprived zombie. I think that had a
lot to do with my becoming diabetic. Also, I had a an appendectomy in
1988 during which I was three hours on the table and became cyanotic.
My surgeon worried about what that would to to my mitochondria. And
mitochondria figure into insulin resistance, one of my main problems.
Since getting health coverage I spend my nights hooked up to a Bi-Pap
air blower that enables me to sleep. Right after I got it my sugars
came down so dramatically my doctor reduced one of my medications.
But my edema has cropped up a few times, for a period of several weeks
at a time. Once it was so bad my doctor switched me temporarily to
lasix, a much more powerful diuretic. I treat it with pressure
stockings and ace bandages, and eventually it goes away. I have not
been able to identify a reason why it comes back or a reason why it
goes away again.
February 25th, 2003 at 8:35 pm
You need to find out. Swelling can be a sign of lots of things. I learned a
lot as I was being tested. They can indicate heart problems, kidney
problems, medicine reactions (even after years they can develop), a blood
clot or blockage or Lymphedema (LE).
If its LE the absolute last thing you are supposed to do is take diuretics.
They now know that they worsen LE over time and it eventually becomes
irreversible and the leg will eventually get hard like a tree truck if not
treated properly.
I started getting swollen feet before I was diagnosed with diabetes. I
was on a four-month bicycle excursion from Michigan to Seattle. My
feet started swelling, and my health pretty well tanked in general.
Among other things, I started having trouble sleeping. My doctor put
me on diuretics for the swelling, which worked at the time.
This was the beginning of my sleep apnea phase, and due to unemployment
I spent about two years as a sleep-deprived zombie. I think that had a
lot to do with my becoming diabetic. Also, I had a an appendectomy in
1988 during which I was three hours on the table and became cyanotic.
My surgeon worried about what that would to to my mitochondria. And
mitochondria figure into insulin resistance, one of my main problems.
Since getting health coverage I spend my nights hooked up to a Bi-Pap
air blower that enables me to sleep. Right after I got it my sugars
came down so dramatically my doctor reduced one of my medications.
But my edema has cropped up a few times, for a period of several weeks
at a time. Once it was so bad my doctor switched me temporarily to
lasix, a much more powerful diuretic. I treat it with pressure
stockings and ace bandages, and eventually it goes away. I have not
been able to identify a reason why it comes back or a reason why it
goes away again.
Anything posted in this group is the opinion of the person who posted it.
February 26th, 2003 at 12:37 am
Ask for heart, kidney and liver checks, and for a diagnosis of your
swelling. Lymphedema is a condition that never goes away, but can be
controlled if caught early enough.
The worst case scenario with it is elephantiasis.