Lymphedema – Swollen feet?

First off go to here:
URLhttp://www.mayoclinic.com/health/lymphedema/DS00609URL and just read the definition!
Do you also have hyper or hypo thyroid problems? The hypo thyroid sort of ‘helped’ this problem for me. along to the point where edema is now chronic.
I’ve found that compression stockings etc, are very uncomfortable…as they don’t gradually ease up from either end of compression…thus leaving BIG dents in your edema. W/the neuropathy? This either hurts or drives me buggy for no apparent reason. Finding socks and footwear that don’t bind seems to be a great ‘quest’ for many, and for a heap of folks with just ‘PN’ as well.
What works best for me has been a regular massage that presses the stuck liquids upwards in long slow strokes. Should you be lucky to find a physical therapist who can actually DO this well? It FEELS SOO GOOD!…but, you’ll have to watch, learn, and ask questions so you can do it on your own. As PT doesn’t go on forever!
I’d gotten edema from thyroid issues when my feet and ankles had swollen to 3 times my shoe size. It’s understated to say that my toes got VERY ugly. It took about a month for the swelling to go down, but now I must wear shoes a size larger than normal to accomodate the swelling that can occur.
My lymph system is damaged as a result? Sort of like my nerves, since the two are supposed to act then interact with each other, and now don’t do it well at all!
IF you can do water aerobics or lite water exercises? The water pressure helps at times. I just can’t tolerate the outside of the pool world as I’m very cold intolerant…my toes and whole feet will turn a deliteful shade of almost true blue. So, I just do massage occasionally.
Hope this helps. Good luck too!!!

Chrissy – I am glad you are getting some help from the volunteer neuro AND getting accepted into the teaching hospital. Although it is the GYN, perhaps they will recognize that you need much more complex and complete attention from their top diagnostic Drs. Please keep us posted. I never heard of lymphedema before. The leg swelling so much is not a good thing, I am sure.
Does sleeping in heavy socks help the icy toes?
I know people who “sleep” all night in their recliner due to acid reflux. Or maybe one of those wedge pillows?
You are getting other help here, of course, from others who either have more experience with what you are dealing with or simply interested in helping you research these issues.
Good Luck.

Here is my experience on Lymphodema.

I have had lymphodema for a long time before GBS/CIDP but while I was in rehab for CIDP I was diagnosed with the Lymphodema officially. The OT wrapped my legs daily in a special foam over foam and ace bandage type of material and then 30/40 compression stockings and now my legs are normal, that is probably the only thing normal about me.

now my meds are also affecting the size of my legs but I am trying to keep them in control

Good luck, tomorrow with the new Dr’s. I hope & pray they give you some much needed help, and answers.

This is a Breast Cancer site that is good, and while it focusses on the arms/hands, it gets down to the whys and wherefores.
My own ‘edema’ is in my feet, and not due to diabetes, rather another autoimmune issue. That issue ‘presented’ itself 6 months after my CIDP onset and 12 months after the CIDP onset a BC lump was found. Fortuneately, I’d not had any lymph glands affected yet.
PLEASE PLEASE PLEASE Don’t fall asleep with the heating pad on your feet! That didn’t help w/my own swelling! In fact for a while I HAD to llive with blue toes just to keep the swelling down! I now have what I believe is permanent damage due to that ‘falling asleep’ issue. I’ve found ‘Bed Buddy’ things that you heat in the microwave work well [providing that you use a lite towell between you and the ‘heater’ at first] and just using your hair dryer on lo blowing on really cold feet. These are safer in the long run, as you are like a diabetic in that you likely won’t know if you’re burning yourself!
Hoping this helps…. Take special care please.

[QUOTE=homeagain]This is a Breast Cancer site that is good, and while it focusses on the arms/hands, it gets down to the whys and wherefores.
My own ‘edema’ is in my feet, and not due to diabetes, rather another autoimmune issue. That issue ‘presented’ itself 6 months after my CIDP onset and 12 months after the CIDP onset a BC lump was found. Fortuneately, I’d not had any lymph glands affected yet.
PLEASE PLEASE PLEASE Don’t fall asleep with the heating pad on your feet! That didn’t help w/my own swelling! In fact for a while I HAD to llive with blue toes just to keep the swelling down! I now have what I believe is permanent damage due to that ‘falling asleep’ issue. I’ve found ‘Bed Buddy’ things that you heat in the microwave work well [providing that you use a lite towell between you and the ‘heater’ at first] and just using your hair dryer on lo blowing on really cold feet. These are safer in the long run, as you are like a diabetic in that you likely won’t know if you’re burning yourself!
Hoping this helps…. Take special care please.[/QUOTE]

Homeagain, I am confused :confused: — this isn’t a breast CA site, it is a GBS/CIDP site. Perhaps you meant to put a link or website in your post and forgot?

FYI, the lymphedema from breast CA, typically occurs when a large number (sometimes just a few) of lymph nodes in the armpit area are removed due to the cancer surgery. A compression garment can be worn on the arm to help keep this down, but some people still have severe problems with the swelling anyway. I work with a lady in that condition. She has been in a compression garment for at least a year and one can tell that her arm is almost twice the size of the other arm.

Great reminder regarding the heating pad! It seems like no matter HOW many times people are reminded of this fact, it still happens 🙁 .
Always, always have a protectant between a heating pad and the skin and also a heating pad that has an automatic shut off (like after 1/2 hour) is an excellent idea and worth the extra minimal cost for safety 🙂 .

Chrissy – I have had the problem of icy feet cured once and for all, in my case. It’s called ~ menopause:o