LE Getting Worse & Stocking Problems

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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LE Getting Worse & Stocking Problems

Postby roadmon » Sat May 03, 2008 12:04 pm

I have had LE since early 2006 in my RIGHT UPPER LEG (ABOVE THE KNEE_due to melanoma. I had lymph nodes removed in my right groin and my DR never told me anything about LE. The groin area is the worst area for me. I went from very light stockings to heavier & heavier. My leg is just getting bigger & bigger at the top of my thigh, even though I do everything I'm supposed to do and have a good therapist. It was suggested that I be fitted with a pantyhose style stocking that would also go a little down my lelf leg.......this is because I now I have some swelling also in my hip area & right side of my butt. Before I was wearing a 40-50 custom stocking that went up to my thigh.....perhaps that cut off some of the drainage on the way up to my chest and arm area.....?? It seems to me that no matter what I do....this condition just gets worse. Any help out there? :cry: :cry:
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Re: LE Getting Worse & Stocking Problems

Postby jane » Sun Jun 01, 2008 5:05 pm

Wow, that sounds hideous! Have you gone to a therapist who understands how to bandage and do manual lymphatic drainage for groin lymphedema? It's a special skill and you want someone certified by one of the top schools (Foeldi, Vodder, Klose). Look for "LANA certified" therapists.
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Re: LE Getting Worse & Stocking Problems

Postby OzClaire » Mon Jun 09, 2008 8:34 am

You might be on the right track thinking the thigh only stockings have acted against drainage :wink: .. it is possible to get heavy stockings that go from waist down or maybe bandaging instead of stockings :?: ... they may be better. ,,, this might sound like a bizarre suggestion but have you tried lying on the floor with your legs up the wall?? Gravity assists drainage and it might help .... worth a try maybe?? Swimming is really good too (shower after and use antibacterial wash). Bug supportive hug and lots of positive vibes coming your way :arrow:
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Re: LE Getting Worse & Stocking Problems

Postby roadmon » Tue Jun 10, 2008 6:31 pm

Thanks for the advice. I go to a wonderful therapist, but I still have problems with the top of my thigh....where too many lymph nodes were removed. I've ordered a waist high stocking which is suppposed to help move fluid upwards, away from the going area. I sure hope it helps. I've had LE for two years and it has gotten much worse since the beginning. I've gone up 2 sizes in pants and have had to wear an ugly 40-50 compression stocking for the last two winters. I wore a much lighter one last summer, but this summer it will be heavier (ugh!). I've hated this for two years, but I know at some point I have to accept it. Thank you for answering.

Beck (Roadmon)
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Re: LE Getting Worse & Stocking Problems

Postby roadmon » Fri Jun 13, 2008 5:27 pm

I'm back.....I didn't mention that I swim at our health club at least 3-4 times per week. That seems to relax my leg a little bit. The pain I have is at the top of my inside thigh. I think there might be some nerve damage, because I get pain in that same area. Hopefully the waist-high stocking will help some with that and also help the fluid draning better up to my arm & chest.

Beck (Roadmon)
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Re: LE Getting Worse & Stocking Problems

Postby Iween » Thu Jun 19, 2008 10:54 am

Hi,
I had the same problem. I paid so much attention to my legs but it just moved to my groin/pelvic/ hip/ abdomen/buttock area. I was miserable for about one year before I got it right. I spent alot of time doing massage therapy (self taught by my therapist) around this area and I got a jovi suit that I wear every night with a tight compression garmet over it (like a girdle). Then I wrap my leg. This keeps the whole area from toe to waist in compression. During the day you may want to try some tight biker shorts or a girdle type garmet over your compression hose to keep the area tighter. I still periodically have pain from the area where the glands were removed, but it is so much better than it was.

Good luck, I know from experience that this is a tough area (and a bit embarrassing).
I am at 10 years of secondary lower extremity lymphedema. I have grown to accept this disease, but that doesn't mean I don't still have my pity party days. The only problem is no body shows up to the party but me???? Take care.

Irene
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Re: LE Getting Worse & Stocking Problems

Postby roadmon » Thu Jun 26, 2008 5:45 pm

I agree with you, Irene. I have pitty partys about once/week. This is a tough condition to get used to. Just when I think it's not too bad, my leg is bigger at the top of my leg where lymph nodes were removed) and now the left leg has grown, too. They both are bigger than my little skinny legs used to be. There are many clothes I used to wear (size 4,6) that just don't fit anymore and feel I might as well sell them or give to my daughter-in-law. This has bothered me for the last two years that I've had it. Last summer it wasn't nearly as bad when I was wearing lighter stocking (light 30-40 and then 40-50 regulars. Over this winter I had to wear a custom made 40-50 stocking that was heavy and ugly. Now a more summer weight one is being custom made for me again. It will be waist high which is supposed to help the fluid move upward better. God, I hope so. I've been very depressed over this condition and even thought about suicide once, but of course didn't go through with it......my husband of 36 years and our wonderful sons 25 and 21 would have flipped out if I tried something like that. Oh well, I guess we just have to live with it and not complain too much....it could be worse.

Beck
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Re: LE Getting Worse & Stocking Problems

Postby ThirdHorn » Thu Jul 10, 2008 6:30 pm

Just a thought: how about bicycle shorts plus thigh-high stockings? Might work. . .
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Re: LE Getting Worse & Stocking Problems

Postby patoco » Thu Jul 10, 2008 11:23 pm

Hey "Thirdhorn" :)

Actually, if you can get them on, a number of LE docs and therapists recommend biker shorts. The lymphers that have spoken of using them seem also to be helped.

Beck, you hang in there. Trust me, I know how you are feeling. For me, the whole last couple of years have been one hospitilization after another...surgeries...massive lung fluid....lord, you name it. :? You're right though, your family would be devastated if anything happened to you. Big hug your way :!: :!: :!: :!:

Glad to hear you are getting some swim time. Swimming is super for lymphedema.

Pat 8)
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