lymphedema in Ohio

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lymphedema in Ohio

Postby suzeeq » Mon Jun 19, 2006 9:52 pm

Hi, my name is Susan and I have primary lymphedema in my left lower extremity. It has been interesting reading all of the stories. Thanks for sharing. It is so good to know that I am not alone, yet at the same time, I am sorry for all of you that have this condition as well.
Here is my story... It was Sept. 2002. I noticed my left ankle looked swollen. It was just minimal, so I watched it for a couple of weeks. I went to my primary care physician. I had an extensive work-up which included an EKG, echocardiogram, blood work, venous, abdominal and pelvic ultrasounds. Everything checked out fine. No blood clots or heart problems. My doctor then referred me to a vascular surgeon. Well, it took me awhile to go. I am a nurse, and work in a hospital and see all of the awful stuff. I didn't think the edema was bad enough, even though it was pitting by this time. But, I knew it was not normal, and really wanted to know what was wrong, so I finally went to the vascular surgeon. He sent me for a CT scan which was normal too. This is terrible to say, but I was almost hoping for an abdominal or pelvic mass, so they could do surgery and remove it, then I would be fine. So he diagnosed the lymphedema, prescribed the stockings, and sent me to a lymphedema clinic. I do not have any family history( but I just found out about a cousin who has frequent episodes of cellulitis - I think he has LE), no trauma, no surgery, no reason at all to have this. So it must be primary tarda as I was 48 when this started. And I am of normal weight, but have gained about 10 pounds, probably due to the excess fluid in my leg.
Fast forward to the present - It has now spread to my groin area on that side and left buttocks, but just minimally. I get MLD twice a month, wear a thigh high stocking 30-40 compression, faithfully, walk 2 miles on the treadmill every day. I have never had cellulitis, thank God, but my leg size is increasing, so I know it is just a matter of time before I will need to start the wrapping. I am trying to hold off until the fall, when it is a little cooler. My foot is swollen all of the time now, even more so in the mornng, even after having it elevated through the night. So I certainly understand the shoe issues, as I wear flip flops most of the time. I can still get into my athletic shoes, and the ones that I wear to work, but they are extremely tight and I can't lace them all of the way.. I don't mean to whine, am just venting, and I know alot of you have dealt with much more serious issues than I have. I too have pain, decreased sensation, occasional pins and needles, thickening of the skin. I work part-time, 12 hour night shifts and love it, but my leg is very edematous when I get home. But I am not ready to retire yet.
As for the clothing issues others have talked about, I wear mostly pants now, sometimes capris since it is warmer. Gone forever are skirts, dresses, shorts and cute little sandals. But the rest of my health is good, I am still able to walk and work and exercise, so I know I am blessed. I have a supportive husband, 3 wonderful children and great friends. I am looking forward to one more college graduation, weddings, and grandchildren. ( Nothing on the horizon, but my kids are all in their 20's, so it's just a matter of time). Thanks for this site and letting me tell my story.
suzeeq
 
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Postby silkie » Tue Jun 20, 2006 10:44 am

Hi Suzeeq

Welcome to our le family

I have primary in both legs from puberty but long time getting diagnosed

i also have lipedema

You mentioned you get MLD twice a month . Do you do massage and skin care each day? I understand why you don't wish to wrap I dont wrap my arm but i do use kinesio taping on it for the lymph and carpol tunneling
it helps a lot

I really do find the massage helps both with the pain and the moving of
fluid the build up each day even in the early stages can cause much swelling and pain The massage each night helps reduce a little and helps the aches and pain I think this might help

If the leg is staying hard solid and getting bigger maybe wrapping needs to be considered

If the fluid stays in the tissue the infections willnot be far behind

hugggggggggggg

Silks xxxxxxxxxxxxx
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suzee

Postby marigold » Sun Jun 25, 2006 7:24 pm

Hi, Suzee Q
Please pay attention to anything Silkie says--she may look like a dizzy blonde, but she's smart! :wink: (That's just a joke-- I have no idea what Silkie looks like!) If you are thinking that you can "hold off" for awhile on types of treatment, forget it! All of us who delayed treatment or self-care, whether for lack of information, lack of finances, or self-deception ("It will be okay if I just don't think too much about it") are SORRY now! :(

Wrapping is not that uncomfortable, but it is inconvenient. Once you learn how to do it, do it often. Wrap for the night. This applies to leg LE. You also need to do massage on the groin and buttock area. Listen, I have the same situation, except that my LE resulted from surgery 23 yrs ago. I have LE in the left leg which developed gradually, and did not get treatment until early 2004. THEN the swelling moved into the lower abdomen on the opposite side, and very slightly in the buttocks. BUT in my case, I already had a big problem w/ genital LE and lymphorrhea and associated disfigurement! :roll: :evil:

If your job requires being on your feet most of the time, it is definitely detrimental. Exercise is wonderful, but just standing around is not good. What do you wear to control the swelling of the groin and buttocks? I sometimes wear my thigh-high (I believe it is 30-40, like yours) and sometimes these horrible thick, itchy tights. I tell my coworkers when I am going to the restroom, 'cause we joke that I will need an extra five minutes to get the tights back up! With the thigh-high OR wrapped leg, I wear regular bicycle shorts; they hold up the bandaged leg (this is in the daytime) and provide some compression in the groin area. I have even more garments as well.

Clothes: I would be careful about wearing sandals if my feet were swelling. You really don't want to get that swelling to settle in.

Okay, that's my advice,Suzee. All all free, too!
:lol: :lol:

Marigold
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replies to Silkie and Marigold

Postby suzeeq » Mon Jul 03, 2006 11:53 am

Thanks so much to you both for your advice. I already do self MLD, but not consistently, and I know I should do it daily. So I will work on that. And I do massage the groin area, but how do you do the buttocks by yourself? So far my skin is fine, but I can tell it is thickening and getting a little rough at the base of my toes, so I slather on the lotion. But I can only put the lotion on right before bed. A friend of mine who had radiation treatments due to breast cancer told me that her doctor suggersted she use Aveeno lotion, that that was the best to use for skin care. So I will try that. I just finished my 3rd Pilates class. I was so sore last week, but feel better today. Of course I am limited on what I can do, and when my limb gets tired, I stop. I just thought I would try it and see what happens. I definitely need to increase the strength in my other leg. Yesterday, I purchased a mini trampoline and tried it this morning. That is harder than I thought it would be. It gave me a headache, all that bouncing around. I guess it's like anything else - you have to start out slow and build up. And I also bought a block pillow to elevate my leg at night. I always thought that elevation didn't work, but that was because I was just using a regular pillow. The new pillow seems to be working great. My leg was soft this morning and only minimal swelling in my foot. And lastly, I have a friend with a pool and she offered the use of it at any time. I feel almost normal in there - it's amazing. I could stay in there all day!
Have I missed anything? Ah, the wrapping! I am still going to wait. I am having good results with the other things that I have mentioned above. Plus I am planning to go the University of Arizona and see a lymphedema specialist there. I don't have a LE doctor where I live, and I want to have the lymphangioscintigraphy to find out where the obstructions are and if the LE will turn up anywhere else.
Again, I appreciated both of your responses. How am I doing now?
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Postby silkie » Fri Jul 07, 2006 6:12 am

Hi Suzeeq

Sorry i missed your posting

MLD i do each day simply because I make lymph fluid each day

my body cant get rid of it all by its self so i help it.

Twice as much work to do the day after if i leave it.

Trampoline some do use them i believe walking on the spot

not lifting your feet of the trampoline is the best way to use it

low impact excercise is good

I love yoga although i have had to addapt some of my old movements

but thats the wonder of yoga no pain no strain breathing gentle stretching

i found i gained flexibility so i slowly gained movement


the Pool is fantastic you lucky thing lol

Good luck in Arizona Let us know how you get on

You are doing fantastic Suzeeeeeeee WTG


hugggggggggg
Silks xxx
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frustrated

Postby suzeeq » Sat Jul 08, 2006 9:56 am

Thanks again Silks for your reply..I thought I had this LE under control. I was determined that this condition was not going to run my life. However it has a mind of it's own. This past Wednesday I was not scheduled to work so I had errands to do, did some housework and went shopping ( trying to find pants that fit). Long story short, I ended up working that night. I work 12 hour shifts which start at 7:00pm till 7:30 in the morning. I came home, slept 4 hours with my leg elevated. When I got up, my thigh, hip, buttocks,and part of my abdomen were all swollen, more than usual. My foot and lower leg weren't too bad, probably due to the elevation. It just goes to show me that I need to balance everything in my life. I thought that by exercising, watching my diet, by using the trampoline, elevation, all the things that I have done to keep this LE under control, I can't do all that I used to do. At least not in the same day! Lol! By the way, what is GMT, how do I get in to chat? I am terrible on the computer. Amazed I have gotten this far. And how do you get the smiley faces into the body of this? I need some lessons! Thanks!
suzeeq
 
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Postby silkie » Sat Jul 08, 2006 10:33 am

Hi Suzee

ok to the left of the screen as im typing in the box there is some yellow
faces "emotions" just put the cursor on the one you want and left click your mouse :P a letter will come up when you post it changes into the face :D

GMT time in uk were 5 hours ahead of New York if that will help you
Sunday nights 8pm (hope Pat gets in this Sunday shhhhhhhhh dont tell him :lol: ) love to meet you will be cool

Im not sure maybe someone else can jump in here but i seem to remember someone talking about trampolines and fluid build up .might be worth checking it out.

You are right in about pacing yourself I used to be able to meet myself coming back if you know what i mean. Now i do one thing then time out
then another time out patience is something you develop with lymph too

I had everything under control suzee did everything right was doing real well then from out of the blue cellulitis Thankfully my practioner had told me that it sometimes happens and its nothing you have done or not done
just one of those things

However doing too much can aggrivate your limbs so as you say pace yourself

look forward to seeing you Sunday i hope xxx fingers

Hugsssssssssssss
Silks

:wink:
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Sunday Chat

Postby suzeeq » Sun Jul 16, 2006 1:51 pm

Hi Silks, I have been having trouble with aol for the past 2 weeks and got in today under internet explorer. I don't know if I can chat today but will try.
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Postby silkie » Sun Jul 16, 2006 2:10 pm

HiYA Suzeeq

I do hope you can make it

x my fingers hugggggggggggggggggggggg

Silkie xxxxxxxxx
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Postby suzeeq » Mon Jul 17, 2006 1:52 pm

Hi again Silks, you are very expedient with your replies. I appreciate it. This is the only way I have figured out how to communicate with anybody at this site. As I told you before, I am not good with the computer. We have a second computer at home which I am using today, and so far aol is working fine. I never know if the problems I get using the computer are because of me or the actual computer! Anyway, how do you get in to chat? It will be 2 weeks before I can try again as I work this coming weekend and will not be around. Is Sunday the only night? By the way, I looked up some info about the trampoline. Apparently when you jump and are up in the air, it opens the lymphatic valves. Now if I could just figure out a way to stay up there! lol.. Thanks for writing back all the time.
SuzeeQ
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