Newby with a few questions

[CathyC]

Hi, I have a few questions. I had my lymphedema confirmed several years ago when I was at PT after a hip replacement. The lymphedema specialist came by and asked me what I was doing for my lymphedema. I basically told her nothing because it's never been officially diagnosed. Since then I did my best to ignore it and go on with my life the way it had been only better because of the hip replacement (the worst LE is on the opposite side). Anyway, the next time I saw my GP I asked him about it and he agreed that's why my feet/ankles/legs are so huge. OK, my next question was what do I do? The only thing he told me to do is to keep them from being dry. That was some two and a half years ago. I elevate my feet on occasion, but since I'm a Mom, Wife and Medical Transcriptionist (former nurse) it's hard to sit with my feet up much. Two days ago I gave in and got myself some knee-high compression stockings and, except for today as they are still drying, I've worn them almost constantly. OK, now, how much should I wear them? My hubby is upset that I'm not wearing them 24/7, but I told him that they are not for good wear and that I do need a break every so often.

Also, what about these lymphatic-draining exercises that I read about? How do I do them? Do you have to be able to reach your toes to do them? (You should see me put the compression stockings on, it's a laugh and a half! )

Because of a limited income and needing to use my feet/toes to work the foot pedal for my job, I have gone barefoot for years. Now, I'm starting to develop problems on what would be the side of my biggest foot but it's now swollen to the point that I actually walk on it. The side is calloused and sore but not broken down, yet. I've got some Dollar-general Crock copies that I can fit into and I pretty much wear those or another pair of clogs, if my feet are not too big, for my shoes. How much harm does going barefoot do? I try to walk but it's to the point where my foot hurts if I do even a quarter mile. I was up to 1+ miles after my hip replacement, and it's very discouraging to me. I guess I could really just use some encouragement and support. Thanks for approving me for here.

Oh,a few things about me, I'm a 53, almost 54-year-old mom of a 12-year-old daughter, a fir-baby (Ruby the Red-bone hound who is my enthusiastic walking companion), and wife to Tom. We live in Zephryhills, Florida which is why I've been able to go so long just being barefoot!

[patoco]

Hey Cathy

Super welcome to our family here

Zephryhills is in lovely country, I grew up not far from there.

The major risk you run from going barefoot is the potential of injury. Should you get any type of wound, it could rapidly become infected, and turn into cellulitis.

For a further rundown on these infections, see

INFECTIONS ASSOCIATED WITH LYMPHEDEMA

http://www.lymphedemapeople.com/wiki/do ... lymphedema

This page gives a complete run down on leg lymphedema and will include answers to you other questions:

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

This page will provide info on the gold standard of treamtent, manual lymphatic drainage and/or complete decongestive therapy:

MANUAL LYMPHATIC DRAINAGE (MLD) and COMPLEX DECONGESTIVE THERAPY

http://www.lymphedemapeople.com/wiki/do ... herapy_cdt

Hope this all helps. While you are reading through these pages, be sure to jot down any questions too.

Finally, another bad thing about going barefoot is that shoes actually help in holding down some of the swelling of the feet. Without this constraint, they are going to keep getting bigger and you will eventually be unable to walk or stand.

It is critical now for you to move onto the next step. Have your doctor give you a referral to a certified lymphedema therapist and get started on a treatment/management program.

My very best to you

Pat

[CathyC]

Thanks so much! As I read this I'm barefoot, again (grin) I guess it's a tough habit to break. The nurse in me knows better but the transplanted Floridian says "but it's so nice out, why not?"

I don't have time at the moment to read those pages over as I'm getting ready to start working, a bit late because of stomach complaints this morning, but better than never.

I'll be sure to write down any questions I have. In the mean time, I'm also trying hard to watch my sodium and other generalized edema treatments. Because of the strange start of the day I've not put on the compression stockings, but I do try to wear them most days.

Thanks so much for the welcome again and while typing this I was a "good girl" and slipped on the shoe on my worst foot.

Cathy C.

[blubrdfrend]

Hello Cathy, Welcome to our group. I wish that you were inelgible to be a member but such is life. I just recovered from cellitis a few months ago. I had worn velcro sandels outside and got an ant bite. What a train wreck! You do not want an injury on your feet or legs.
Shoes are sometimes hard to find and expensive too. I usually buy mine at Zappo's. They carry width's up to 4E which is the widest that I have been able to find in a 6 1/2. Your choice of styles will be very limited.
Betty

[CathyC]

Hello Cathy, Welcome to our group. I wish that you were inelgible to be a member but such is life. I just recovered from cellitis a few months ago. I had worn velcro sandels outside and got an ant bite. What a train wreck! You do not want an injury on your feet or legs.
Shoes are sometimes hard to find and expensive too. I usually buy mine at Zappo's. They carry width's up to 4E which is the widest that I have been able to find in a 6 1/2. Your choice of styles will be very limited.
Betty

Thanks, Betty. No, the last thing I need is an infection of any kind. I just finished transcribing a note from an infectious disease doc who was treating someone with chronic leg infections and he opened my eyes to one thing... I never thought of my chronic athlete's foot as a possible source for infection but I guess it could be. So, it's time to take a long hard look at how I treat my feet/legs. But, on the good side, I'm wearing shoes more often even in the house. Glad you were able to kick that cellulitis! Right now, we just don't have the money for expensive shoes. So, I will wear what I've got and deal with it. Maybe it's a new fashion statement or something.

Cathy C

[cleo]

Re getting stockings on. Best advice I ever received....rubber gloves!!!

[patoco]

Hey Everyone

Good discussion

Most of us have tended to ignore our feet, which is a potential disaster waiting to happen. I'll always remember back in 1970 when I got my one and only case of athlete's feet. Never did figure out where it came from, but I know with lymphedema it proved super difficult to get rid of.

I'm like you too Cathy, I don't even go barefoot inside my home.

Remember any break in the skin on our feet can open the door wide for possible cellulitis.

I wish wearing shoes were as simple for our women family members as it is for men. What I do is buy my shoes according to the size of my worse swollen foot. Strangely enough, it has worked well all my life.

The one thing there seems to be much disagreement on is the wearing of tennis shows. Though I love them, I don't wear them because (1) they don't provide the same amount of constriction on the swollen feet as regular hard shoes do and (2) they tend to get more bacterial count in them, not to mention the possibility of fungal infections.

Also, I did want to share a page we have on foot care.

Foot Care for Lymphedema
http://www.lymphedemapeople.com/wiki/do ... lymphedema

Pat

[CathyC]

Thanks, Pat,

I'll look over that site as well. I honestly think that there hasn't been a time since early teens (and remember, I'm mid 50s) that I've not had SOME degree of athlete's foot. My grandmother used to make me soak them in hot, strong bleach/water solution until they were red and sore to try and kill the fungus. Needless to say, it didn't work.

Oh, I do have one more quick question...about the care of the support stockings. I only have one pair, and they were $37.00, which is more than I've EVER paid for stockings in my life. What is the best way to keep them clean and dry without ruining them?

Thanks again for all the info....

Cathy C.

[patoco]

Hey Cathy

Got another page for you:

Compression Garments Stockings for Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

All you wanted to know about compression garments and stockings.

Pat

[CathyC]

Re getting stockings on. Best advice I ever received....rubber gloves!!!

My hubby helps me get the stockings off sometimes and he has no clue when he's not being careful how painful it can be to pull over the swollen areas. These are the Futuro open toe/open heel knee-highs in the 20-30 mmHg "strength."

Hope everyone has a great evening.

Cathy C

[joanne johnson]

I have had lymphedema in my legs and feet for about 30 years. I also had athletes foot since childhood. I had insane itching so bad, especially during hot weather I couldn't stand it. I have had numerous cellulitis infections and hospitalizations. I had a very bad cellulitis infection with hospitalization in April. I finally went to the second infectious doctor, he agreed that the broken skin was the entrance for bacteria. He said I can cure you. I had my doubts. He ordered a bottle of Potassium Permanganate . He found it, had it overnighted to his office and paid for it. It is very fine crystals that you add to water. It turns your skin and nails brown . I think I soaked my toes twice a day for 3 days. I was also instruced to use an antifuncal cream 2x per day. The terrible itching has stopped and I no longer need to take antibiotics on a daily basis. I no loner have infections nor do I dread the next infection.

The lymphedema has not improved but alot of the redness is gone. My quality of life has improved and I feel like a miracle has taken place. I am happy to share this information. It is amazing that this one doctor changed my life and nobody else had a clue. I had given up hope about this situation but learned it is never too lateto find a solution. I am very vigilant, If I feel any slight itching I repeat the medication and I am good as new. Good luck to you!

[Sopralto37]

Cathy-
I SSOO understand needing shoes that fit that aren't so expensive. So here's my solution: Skate shoes!! You can find all sorts of skate shoes all over the place. Some of my best pair came from thrift stores (I clean them, I promise). If you don't know what skate shoes are, you can ask your daughter, or look it up online! A brand to use as example (they're a bit pricey though) is DC Shoes. My mom doesn't have LE, but she has wide feet so she's even started to buy them too! They tend to have no arch support, so I recommend getting an insole to go with if your feet need it. Best of luck with figuring things out, I know I've been diagnosed for 12 years, but being in my early 20's I'm still rebelling as much as I safely can.....just trust me when I say that you should pick your battles. Wear your stocking everyday that you're up (but for me I'll leave it off when I'm going to be lounging around the house all day--because I'm elevating). Go swimming to both get your exercise AND your bare foot time! Find a leg elevator cushion to sleep with, it will make getting your stocking on easier in the morning, I promise, and it will probably help you last longer in the day before you get too sore.
Most of all, find something to smile about every day. Laughter is actually really good for your lymphatic system!!
Welcome to the club,
-Sarah