Who else has LE in both legs?

[pilgrim]

After radiation treatment for cervical cancer, I had lymphedemia in both legs, some severe stomach problams etc. Everyday, thanks to my husband, I get an MLD treatment, he helps me with my compression hose (not too romantic) and everynight I wrap.

Sometimes I wrap during the day because of the pain.

Thankfulness comes easy in my family. They are all so supportive and helpful and we put our concerns on the important things in life, the babies. We have an abundant crop and we love everyone of them. There is a lot of healing in holding a new little person and feeding them. There is also a lot of joy in getting them that new little special thing they wanted or taking them to the planeterium.

When I sart to feel sad about myself I remember all of my children are healthy and working and all of my grandchildren are healthy and studying hard. That helps me so much.

Be well.
pilgrim

[pilgrim]

Thank you Ann for responding to my first post.

It is hard to walk or stay on your legs for very long. Some days are more "fluid" than others. Recently I've used a wheelchair for those big malls and long lines.

As you requested, I will post on "Stories". I am not sure what you want for an attachment but I'd be happy to see what you have.

Be well!

pilgrim

[dpkingwally]

Pilgrim,

I also have LE in both feet and lower legs. I do have some fluid above the knee but very little. I have primary lymphdema, meaning a deformed lymphatic system from birth. I did not have problems with swelling until I was about 13 or 14. I am 33 now and in the past year I could no longer wear a wide width shoe. I had to go to a WW and pay twice as much too. My LE does not interfere with any aspects of my life. I do have to wear my Jovipak every night. After the therapy, I can now wear a Medium shoe, something I have not been able to do since I was about 22. My legs looked so skinny after the therapy. That's when I realized how swollen I was all the time. I never knew there was treatment for LE until this past year. I read on the internet and that's how I found Dr. Fife. I didn't realize how serious this can become. I already had some hardening tissues. I also read that in primary LE that early treatment is the key. The article said it could even be reversed. When I was diagnosed there was no treatment available, but knowing what I've learned if my two daughters have symptoms I'll know what to do.

I hope you are well.

Marcy

[pilgrim]

:)
Hi dpkingwally

It's good to hear you found the right help. I have never heard of a Jovipak?

My treatment is wrapping every night and massage every morning.

Absolutely understand when you talk about wide shoes.!

I am 62 and wear mainly sneakers. I also have a walker with 4 wheels and seat that allows me to sit as I wait.

My lymph system damage occured with cessium radation implant treatment and the normal radiation theraphy. It seems more under control now and many nights I skip the wrapping.

The terrible thing is trying to find out, isn't it! Took us 4 years and not until my daughter who is an RN caught me on a bad morning did she realize what was wrong. She also found a clinic near us.

I enjoy many things. I'm so happy for the web and and crafts.
I also have beautiiful granddaughters who are a delightful source of joy for me.

Be well.

Regards
Pilgrim:o

[dpkingwally]

Pilgrim,

The first thing I learned to do is wrap, but when I went to the Women's Health Boutique, the owner told me about Jovipak. There are 2 steps after applying lotion. The first is to put on this boot that looks like an oven mit. Second slip on the power sleeve, which is like a lycra/spandex material, over the boot. That's all. I have loved it. As you well know wrapping is time consuming and much hotter than the Jovi. It's still hot, but not near as bad as the 5 layer wrapping. If you want to see a picture and read some info, visit www.jovipak.com.
I have met a few people with secondary LE, but never anyone with primary LE. I grew up thinking LE didn't really exsist. Dr. Fife told me its rare and some doctors have never seen someone with primary LE.

Do you ever have any burning feeling or do your toes go numb when wrapped? Do you wear a toe glove? Just curious, you are the first person with LE in the feet and legs that I've talked to. Its sure is nice to be able to compare notes.

Thank you for your reply, it meant alot.

Marcy

[pilgrim]

Dear Marcy,
Yes it is nice to compare notes as it is not often one finds another person with this situation. Sadly, I've read that there will be more lymphedemia patients due to the increase of cancer.

Yes my feet sometimes burn and if I I them up will go numb occasionally. I do not know why.

Be well

Regards
pilgrim:)

[2Day]

Hi,

I am new here. I also have primary lymphedema in both legs, virtually all below the knees. I am 50 years old and have had it all my life and I just found out I have it. Always knew I had "thick legs" -- stopped wearing shorts when I was 12 after an aunt who was a nurse noticed my "thick ankles" and started poking her thumb into my legs and said, "you have pitting edema." I was so embarrassed (and you know how body-conscious pre-teens can be!), I just decided that there was something really wrong with my legs so the answer was to make sure nobody ever saw them again. Which I pretty much did!

Well, fast forward almost 40 years, and I just had knee surgery for a torn cartilage in 1 knee. I always knew (all my life) that there were things that would make my legs get bigger and smaller, and basically the more active I was the less likely they were to swell up really badly, so I've always been pretty active, in part to keep the swelling down (self-treatment I guess). But after the knee surgery I was totally laid up for the first couple of weeks, and bingo -- balloon legs. The physical therapist who was working w. me on rehab from the knee surgery insisted that I see my doc about the swelling in my legs, and I got diagnosed with primary lymphedema for the first time in my life! I never knew it was an actual medical condition.

I just thought it was "my ugly legs" and "my own fault" for not getting enough exercise or for "being too fat" or "eating too much sodium" (or whatever) when they would swell up.

HMMMM! So now I am very confused! It is very disconcerting to be 50 years old and first discover that you have a medical condition that you've had all your life. I must have a pretty mild case of it (compared to some of what I've read about lymphedema on the web) because I seem to have done more or less OK without a formal diagnosis or treatment for it so far (at least until I had the knee surgery). I do have some skin problems now that I've more or less self-treated with OTC antibiotic ointment which seems to help.

My dr told me that there is a nearby medical center where they treat lymphedema very aggressively, that is supposed to be quite good. She said she'd be glad to give me a referral if I wanted. But I don't know what I should want here. I have always avoided drs and hospitals and medical treatments as much as possible just because I generally dislike them, which maybe isn't the smartest thing in the world, but its the way I've always been.

So now I'm faced with this new diagnosis, and whether or not I need treatment for something I've had all my life, and if so what kind of treatment, and I have no idea what to think.

I am just so confused!

It is good to know that there are other people who have the same thing. I basically never heard of it before this.

Oh well, sorry this is so long! Glad I found this message board, and Hi!

RuthG

[pilgrim]

Greetings 2Day,
It is fortunate that all this time you did pretty good.

Cannot emphasize enough the importance of getting a good agressive treatment program. You will want to know how to care for swollen limbs and the skin. The skin, being an organ, is important and the lymphedema clinic where i go gave me a list of lotions, a certain soap, and how to wrap. The wrapping may sound terrible but OH, how it relieves the pain. Some days we seem to need those wraps and other days are fine.

They also prescribed for me compression hose which I wear nearly everyday. They are excellent support for my fluid- filled legs.

pilgrim

[2Day]

I guess one of the things I'm wondering about is, are there different degrees of severity of LE?

I mean, it makes sense if there would be. Y'know, mild LE, very severe LE, etc.

I'm wondering because it seems like a lot of the people I'm reading about on the Internet seem to have it a lot worse than I do. Is there such a thing as a "mild case" of it? Or is every case of it more or less bound to progess to the severe degree that I see others talking about, if not treated aggressively?

I haven't found any info that actually addresses that.

It reminds me of when my sister was diagnosed with multiple sclerosis (years ago). The only things we could find about the illness talked about very severe cases of it, and were very scarey! Over the years she learned that about 30% of MS cases remain very mild, do not progress, and cause very little significant disability (FORTUNATELY, thank God, that is what she has). At the time she was diagnosed we thought a dx of MS necessarily meant a lifetime of increasing disability, wheelchairs, and decreasing mobility leading to an early death. It hasn't been like that for her at all. She still works, is virtually fully mobile, but just needs to be careful to avoid fatigue and heat, which do make it worse. She's had to take several brief courses of medication over the years for it, and a few weeks off work here and there when she's had a relapse, but for the most part I would guess most people aside from her family don't even realize she has it.

I was wondering if LE has different degrees of severity (like w. my sister's MS)? Or if I don't treat it now, is it pretty much bound to get worse and lead to the (much more severe) problems I've read about but haven't personally experienced (yet)?

Especially if it is congenital -- wouldn't it make sense that there might be different degrees of congenital abnormality -- from (say) mild to severe absence (or abnormality) of the lymph transport system (sorry, don't know all the terms yet -- VERY new to all this)?

I'm getting the picture that many people with LE would give just about anything to live close enough to a major treatment center to have that be a viable option -- so I feel extremely lucky in that respect.

But you have NO idea how much I really hate hospitals and medical treatments... Well, just as an example, I hated the experience of having my first child in the hospital so much that I had my 2nd child at home (by design). Probably easier 30 years ago in a rural area, when there still were some old time country docs who remembered when home deliveries were more common -- but even back then, it was considered a really bizarre thing to want to do by most people. But I did it that way because I was *much* more afraid of being in the hospital than I was of childbirth (and if I'd had any more children I would have had them at home again, hands down, not even a close call)!

I guess thats why I'm so hesitant to embrace the idea of aggressive treatment for LE. I'm just plain SCARED of medical procedures and medical facilities!

(Is that really crazy or what?!?) But thats the way I am... (shrug)

[pilgrim]

2 Day
This is a link that explains the stages. You seem to have been diagnosed at an opportune time. But because it seems to generally progress I still believe aggressive treatment is the place to start.

Mine has progressed very gradually. But overall, I'm in better shape than I was before I was treated. But at least you do not have an emergency situation to deal with as some. You might start by making contact the the treatment center to inquire what type of program they would plan for you. Just a thought.
I cannot rush into anything either. I have to study it all out for awhile but lymphedema is lymphedema.
Keep in touch.

pilgrim

[2Day]

Wow, you guys are really GREAT - you are so supportive and QUICK to respond THANKS!

1 more question -- I was reading the link that pilgrim gave (and have already seen this in other info too) that listed celulitis as a possible complication of LE.

If primary LE is somewhat hereditary is it possible my children could also have it (undiagnosed - as was I for so long)?

The reason I wonder is that my daughter (now 29) has had several "unexplained" bouts of celulitis, 2 of which wound up with her in the hospital for IV antibiotics. The docs said at the time that they could find no explanation for her (recurring) celulitis - but I don't think they even considered LE as a possibility.

Do you think maybe there might be a connection? She is (like I was at her age) very athletic and very active, so I wonder if that would tend to control any swelling enough (if she has it), the same way it apparently did for me, so that it wouldn't be obvious that she had LE, even if she did?

It was just a thought, when I saw celulitis listed as a possible complication. Even her docs said it was very unusual for an otherwise healthy young person her age to have had multiple bouts of celulitis -- but they left it as just "unexplained."

Just wondering?????

[dpkingwally]

Last May I went to Northeast Memorial in Houston Texas for LE treatment. It helped me learn how to care for myself and they told me what my options are. They measured my legs and took some pictures. They massaged my body and wrapped my legs with short strech bandages. I went every other day for two weeks. No needles or cutting. Uncomfortable some what, because I was not used to having something on my legs 24/7. After the two weeks I got some JoviPaks, whick took the place of wrapping at night. I slip on a material boot which looks like a big oven mit and then a lycra sleeve, which gives the compression. I have mild LE. I am thin and in good physical shape and my legs still swell.

I just wanted you to know about the LE treatment, so you wouldn't be afraid. I think the word agressive is scarry, but not in this case.

Best Regards,
Marcy (aka dpkingwally)

[Tammey]

Bear with me,I have had to become computer savy over the past few months. I rec'd an e-mail from a woman who suggested this site. Just thought I would share our story. Anna is almost 4 and born with le in both feet. No family history that we can find. It has not been an easy four years but what a learning experience. She now wears special garments called Tribute that she wears only at night time. HUGE DIFFERENCE!!! The best part is that the swelling no longer is as severe as it once was even at the end of the day, even if she has been wearing socks. Feel free to e-mail me if I can be of any help or just want to talk! Tammey

[dpkingwally]

Tammey,

Could you tell me a little more about the Tribute your daughter wears at night? Maybe describe it and tell me where it's available.

Thanks

Marcy

[Tammey]

Anna wears tribute garments that were made by a wonderful gentleman named Don Kellog in CA. They look very much like the quilted mitts for your oven! She has a purple stretchy sleeve that goes over those. They go up to her knees. I was concerned about the posibility of her unwrapping her bandages at night when she was really little, you know how curious they are!

So when I spoke with Don he told me he would gladly make her a sleeve instead. If you would like you can call him at telesto-medtech company (1-831-621-8011).
Tammey

[fineline888]

I am not a medical professional. I have been dealing with lymphedema for over ten years though it was only diagnosed 4 years ago. since that time, I had opportunity to go to the lymphoedema clinic at Roswell Park Cancer Institute. We have been blessed because the breast cancer awareness campaign ( of pink ribbons) in this area has decided to donate a percentage of its money to lymphoedema research. I was able to get lymphatic drainage massage and bandaging, followed by physical therapy. The regimen was a daily routine of about 1 1/2 hours. But I continued to get stronger and stronger. I had a significant reduction in the limb. Of course, insurance sees it all as PT and after 6 weeks....its over. I am now trying to convince them to give me the same number of visits this year spread across a longer period of time, since I can manage some of this at home---but the clinic is better. Things I have found that help:

* I have a piece of foam that I put under the good leg. I sit more squarely (since the left hip and knee swell) and have less lower back strain.

* I purchased a back massager which I can lay on my bed. After you learn the lymphatic pressure points you can lay on it. It doesn't work as well as treatment but it does help enough that I can measure the difference and it doesn't take long. I do that just before bandaging just like at the clinic.

* I have a hip to toe garment (stocking) that I wear on the days I can't get to clinic or get my husband to help with bandaging. But I have to say I REALLY PREFER THE BANDAGES. I get much better support and more endurance throughout the day (unless the temp is over 70 outside).

I am trying to find a clinic, massage therapist, nurse or other outpatient clinic that will help me with my bandages. If you know of any, I would love to hear from you. As for the person who has opportunity to go for treatment, at least check it out. You will meet other patients who are living with this insanity. Family has a hard time understanding the good days and bad. You will learn what to look for to avoid a lymphatic emergency and you might even find some other help. You can always say no. Most of the procedures I have gone through are pretty non-invasive and mostly just time consuming. I wish you the best in your search and your decision. Lynn

[reihasgau]

Hello--I'm new here

I live in the UP of Michigan and have primary lymphodema. It started when I was about 14. I never thought anything of it because my dad's legs are the same way, so I just thought that it was bone structure or something. High school was awful! Everyone wore minis and I had these freakish "stumpy" legs. When I was 21 I was pregnant with my first child and the Dr's asked about the swelling in my legs, but I told them they were always like that, so they just figured I was fine. I always worked part-time jobs where I was moving about, but in 2000 I got a job at a local gas/convienence store where I sometimes worked 8 hours standing in the same place pretty much. That is when my trouble started. The first year was OK, but then I gat a promotion to Asst Mng and worked longer shifts more often. I had one week where I worked 73 hours! But my legs got MUCH worse. I had varicous veins from my pregnancys and since they were getting aggrevated they got really itchy. Of course I scratched them and before long I had open sores on my legs. Pretty soon I could barely walk because they were so swollen and inflammed. This went on quite a while because I didn't want to tell anyone. Finally someone at work noticed I was limping and made me go to the Dr. He put me on Pregnizone and I got better. But when the month dosage ran out the inflamation came back. I yo-yoed the Pregnizone for about 6 months, one on, one off, one on....Finally the last time I noticed a red spot on the front of my leg that was never there before. It grew steadily over the next few days and it was puffy and hot to touch. My manager was on vacation at the time and was due back in 2 days so I tried to rough it out till she got back, but when Jim stopped in one day to let me go to the bathroom he asked to see my leg because I was limping again, plus he said I looked awful. I showed him my leg and he clocked me out right then and told me to go straight to the ER. When I got there I had an infection and they gave me an IV of Rocefin and some Augmentin tablets (which were HUGE). They wanted to hospitalize me, but I told them I had to work till Mel came back in another day, so they agreed to let me go , but only if I only did the paperwork and then went home. They kept the IV in for 3 days and I had to go in everyday for another treatment of Rocefin. When I went to my regular Dr. for a follow up he signed me up for a vein clinic in Marquette, since we still thought my problem was my veins. I went up to my consultation to see if I needed vein stripping and as soon as the Dr looked at me he said, "You have lymphodema." I was like what the heck is that?! Soon I became the hospital freak show. Everyone coming in to look at me and poke at me, talk about me outside the door. It was an upsetting day going in for a consultation and then learning you have some disease that is unoperable, no medicine for, and something I'd have for the rest of my life. They did the vein stripping and while I was in the hospital I met a Physical therapist to works with people who have lymphodema. She showed me how to wrap, gave me compression hose, and taught me some massage and what I could and couldn't do. I also went to a Dermatologist who said I have psoriosis, which is why my veins were so itchy. It has been a year since then and I'm doing OK. I'll admit I've slacked on my wrapping, but I think I'm going to start again because my legs are starting to feel sore again. I'm 31 but the Drs all told me I had the body of a 60 or 70 year old! Aren't they sweet! They told me the three things I have aren't bad on their own, but since I have them all it is kinda bad. My veins get aggrevated so the psoriosis flares up and I itch which leads to an infection. I'm also one of the only primary lymphodema patients they had ever seen. Most said they never saw anything like me. I'm an origional! They think I have Milroy or Meige disease. Now I just have to worry about my 3 kids getting it because on my dad's side of the family there are lots of cases of it that we never knew should have been lymphodema. I'm glad I found this site to know that I'm not the only one out there and to find someone who has "stumpy" legs just like mine! :D

[pilgrim]

Hi ya yooper,

I'm from lower Michigan and I also have lymphedema in both legs.
Mine is secondary as my lymph nodes were removed when I had radiology treatment for cancer.

It's wonderfull to hear you were finally diagnosed correctly and even referred to a clinic. The wrapping is tedious alright but the pain of not wrapping is so much worse.

My husband has recently learned to do massage therapy for pain.
That is so wonderful!!! Also my neighbor makes rice bags you pop in the microwave for 1 minute and oh..it's so comfy.

Glad you found us. Thank you for sharing.

Best Regards
pilgrim

[joyous66]

I am new here does anyone of LE in one leg.


I need to get some information from people who has LE - so I will know what to do.

In the 90's I was having pain in my right calf - went to the hospital they kept me after ultra sound my right leg and found that I had a few blood clots; then 1996, I got a Motorcycle burn on my right leg - It didn't heal for 4 years and they kept testing me for Diabetic and the test came back neg., Now I have D and last year the Dr. did stripping of my veins in the same leg, have problem with my right knee also, now on Monday I found out I have LE in the leg also.

thank you

Joyous66:(

[Karen in NYC]

Well, this thread opened my eyes to my very mild lympedema. First I realized that my dr. needs to be - or perhaps its me that needs to be - more proactive.

I have always had a problem with heavier than usual legs ("I've seen better looking legs on a billiards Table" was a comment a co-worker made years ago). THe earliest I can remember complaining about the swelling was late 1980s. So apparently I have had this for THAT long, and only bec. of my INSISTENCE, did my latest primary care practioner send me to a "specialist" and only again at my INSISTENCE to a foot dr.

Generally you probably would not notice that I have it, and when on VACA and wearing a bathing suit I dont care what people think (well, I do but I dont let it get to me).

I am still on the "finding compression stockings to fit" stage (I cant afford custom stockings.

I have to talk to my specialist about some sort of therapy, bec. while I am not that swollen some times, it is painful. (physically and mentally). And the SHOE ISSUE.....well I wont even go there......and custom shoes are out of the question unless I win the mega lottery (and that isnt looking too promising - not even ONE NUMBER Friday - LOL!) . As a woman, having to go to a 8or 8.5EEEE in MENS sneakers .....X$#@!?+*&

I would also be interested in finding a support group in the NYC area.

Do any of you wear medic-alert bracelets? How do you determine if your case is "severe" enough...(never mind, I know that answer - ask the doctor!!!)


karen in NYC :p

[joyous66]

Hi Karen from NYC - welcome to our family - I have LE in one leg but I think I have it in my left leg now - you can find all kinds of information on Lymphedema People.com and Lets talk Lymphedema on msn.com

these two site are pretty information wise also.

Hi Ann how have you been - hope every thing is good with you


take care Karen and Ann and the rest of the family in here.:)

[Karen in NYC]

Joyous66 - thanks for the info. but I was unable to find the two websites. (one problem is that for some reason, AOl is not liking it when I tried to go to MSN. Perhaps I need to give the 'puter a rest (LOL!)

[ronnie102369]

Hi Pilgrim,

I was just diagnosed with Primary LE in both legs below the knee. I have sufffered with recurrent swelling since 1991. The edema first appeared while I was in Boot Camp in Orlando, FL. The entire time I was in the Navy, I had edema from 1+ to 3+. I was told it was normal and that it was due to my menstrual cycle and eating a poor diet with too much salt.

I got out of the Navy in 1997 and gained a lot of weight since I was no longer required to exercise. I went to several doctors and one put me on Hydrochlorothiazide and told me to lose weight. I took the meds and joined Jenny Craig. I lost about 60 lbs, but the swelling was still there. The doc had no clue what else to do.

I ended up having gastric bypass surgery in Nov 2001 and lost 140 lbs and the swelling was gone for good...or so I thought.

I gave birth to my daughter in Nov 2004 and had no welling all throughout the pregnancy. 4 weeks after her birth, the swelling came back at about 2+. At my 6 week OB appt, my OB told me it was common to see swelling after giving birth and that it would go away in a week or two. A month later, I tried a new Primary care doc who took one look at me and my history and said you have Lymphedema. Never heard of it, I said.

I am now receiving Lymphedema therapy and am wearing the bandages to get the swelling down. I will get fitted for a garmet in a few weeks, I'm told.

My family cannot believe that I have yet another thing wrong with me. I'm only 35! :(
My other ailments and conditions include:

Hypothyroidism (Diagnosed 1992)
Migraine headaches(diagnosed 1994)
Androgenetic Alopecia (Diagnosed 2001)
Antiphospholipid Antibody Syndrome (Diagnosed 2003-after 5 miscarriages)
Restless Leg Syndrome (Diagnosed 2004-pregnancy onset)

I am just glad that there is a treatment for this disorder. It is very difficult to keep up with a baby when it hurts to walk and the Restless Leg Syndrome kicks in when I sit or go to sleep. My husband is in Iraq, so I have no one to help me with the baby. I am just thankful I have been able to care for her so far and will keep a positive attitude so that she learns that there are worse things in life than a few health setbacks.

If anyone has any advice/suggestions on management of any of my conditions, I would appreciate the input!

[cathy]

I am 53 years old and have LE in both legs. I was diagnosed in 2000. but have had swollen legs seems like all my life! I spent 9 days in the hospital for cellulitis, almost lost my leg, before anyone knew what was actually wrong with me. Thankfully there was a doctor on call at our local hospital that knew what was wrong with me. T
he first dr. that I saw two days befor only said I had an infection in my leg. Yeah right! My leg ahd turned black and very painful . I am waiting for my compression boots, should be here any day now. I know I need to get back into threapy but that is 75 miles away and with a sick husband it is not possible to make the trip. My legs are so huge it is hard for me to drive. So glad to have found this site. :D All you LEers take care. Cathy

[Grandma_Sue]

Hello, I have lymphedema in both legs - similar to your situation. I was dx with cervical cancer and had a radical histerectomy and then went through radiation.

The lymphedema is very painful. I haven't had any help with wrapping, husband left when I got sick. He's still around but lives in another city and doesn't visit very often.

I just lie in bed most of the time and attend church on a regular basis. Those in my church are very supportive as they have taken care of me when I end up with cellulitis. however, those in my church family do not want to see me on my feet and this makes it hard to enjoy special events. It's a bit lonely. I plan my day and try to choose my battles. Some days I'm just thankful that the bed sheets are clean and other days I'm leaving a cart of groceries because it hurts to stand in line.

I'm not unhappy but there is some says that are very difficult.

I have a wheelchair but I do not use it - my husband brought it up to Fairbanks to try and sell it for money to help pay some of his bills. I just get angry when I think about it. He still has it and it's been over 4 years!

My husband is another story. I am doing well but would like to have more control over this thorn in my flesh. Should I make an effort to wrap my legs - I have learned how? Should I learn to walk on my hands?:D

It's good to share. My aunt told me that she has been taking 1000mg of Vit C with bioflavinoids 2/day. Since than she hasn't had a reoccurance of cellulitis. I bought some yesterday and am going to try it.

Take care and hang in there,

Sue

[Consha]

I too have been recently diagnosed with Primary Lymphedema... I'm 53 years old and had always thought my 'Cankled' figure to be hereditary, as the majority of women on my father's side had thick ankles... that I can live with~! (lol)

I started having mild swelling in my right ankle about 3 years ago and the doctor I was seeing then didn't examine me, said he didn't know what it was and sent me on my merry way ~ and my husband was very upset. I had been seeing this doctor for 3 years, was on 10 medications and was continually ill. After he was so cavalier about my leg, my husband said that was it. I only recently found a WONDERFUL & supportive doctor this past January ~ now 2 years had lapsed and the swelling had become worse last August. It was in my right ankle & foot and my entire lower left leg.

The new doctor DID examine my legs ~ he also showed my husband that it was curious how my legs didn't seem to leave impressions when he pushed them ~ he ordered xray's & an ultrasound and then he sent me to a vascular specialist ~ she took one look at my legs, asked if I'd ever been diagnosed for LE and of course I had never heard of it. She ordered another ultrasound and diagnosed me with Primary LE. Next I was referred to a wonderful woman who specializes in this field and she set me up with a Physical Therapist she works closely with and within 1 week's time to boot.

We are 'trying' compression therapy with bandaging ~ I seem to be responding according to the measurements, sometimes I have pain AFTER the bandaging comes off (do any of you have pain after compression comes off) but so far we haven't been able to get my legs 'down' enough for other compression wear alternatives.

The worst the swelling ever got was this past Christmas ~ this was before I had been diagnosed, my left calf got up to 27 inches ~ sooooo painful. What I think is strange is I never know when this will occur ~ just out of the blue. I purchased a cane recently so I can remain semi-mobile when I have flare-ups and my doctor gave me a permanent status to acquire handicapped parking ~ this is great when I go to the therapist.

I haven't been able to drive by myself in a bit and I'm sure you all know how 'confining' this disease makes you feel ~ sooooo many emotions. I have alot of other health issues I'm dealing with presently and it is soooooooo wonderful to find this support for my latest 'condition' ~ it's amazing how much I have learned from this board and you great folks so far. I so appreciate your candor and compassion. I'll end this for now new friends and pray that we all draw strength from each other.

God's peace, Connie

[txblue]

I am new to this board and thank goodness y'all are here. I have LE in both legs, the left leg all the way up to the groin, the right leg just to the knee.

Here is my story: In 1988 I was in an accident - run down by a drunk driver. Both my legs were crushed, broken neck and broken back. The lady that hit me had virtually nothing, my workers comp did what they could but physicl therapy was virtually left to myself. No one mentioned Lymphedema. My legs have swelled since the accident. I have had a total knee replacement in 1994 - still no one mentioned lymphedema. Was just told to deal with it. Fast forward to August 2006 and I was diagnosed with malignant melanoma. The cut up my left leg (took roughly 22 stitches to close it up) and took out 4 lymphnodes. No one ever mentioned lymphedema. I went thru 7 months of pain - every test under the sun and no one could figure out what was causing the swelling. I was to the point of ending it all until I met a lady who has the same type of cancer I do.

I have been seeing an MLD therapist now 3x a week - she does the massage as well as the compression wrapping. It has helped so much. As a matter of fact, three days after my first treatment was the first time in 7 months that I slept thru the night. Although its been rough, I am learning how to do the compression wrapping myself. Even set up a timer. I do not understand why doctors do not take this seriously. Why do they tend to blow this off? I mean, the pain was real. Because of all the previous damage down to my leg - when it swelled it was like someone had a vice grip on it and would not let go.

I use to be so active - I ran 5 miles a day, I drove a tractor trailer, swam etc. Now - its all I can do to get going in the morning. At times I feel like what is the use and then other times I have so much energy that I can take on the world. Is this normal? Thank you for listening.....

[taterbug49]

I have just posted a message that all of you may want to read about. It is about compression therapy. You don't have to do all the wrapping. You just slip into "boots" and turn on a machine. If you would like to know more you can e-mail me through my member name.

[nancycels]

I have lower ext lymphedema in both legs. Diagnosed about 2.5 years ago. Am on my 2nd run through of PT. Have a pump and wear Farrow Wraps. Due to the the bizarre weird shape of my legs the wraps kept falling down. So now we foam under the Farrow wraps. Amazingly enough this is working better than the wrapping and foaming which wasn't working too well and is relatively restrictive. Have to admit, the one good thing about wrapping my legs w/foam in the winter is I'm NEVER cold! LOL So I guess there is one benefit of this disease! ;) Had a long haul being diagnosed too, and suspect it may be a result of a car accident many years ago and damage at that thime. Wish I'd known that then! My insurance thankfully covers sixty visits a year which so far has been just enough. I have a great PT and feel fortunate since my primary doc was so uninformed! Good luck to everyone, and keep smiling.

[Pilgrim060]

Hi:

I have Lymphedema mainly in one leg and especially in my abdomen. I am looking for a person or a group to talk to about my pending Panniculectomy surgery. I am hoping to find someone who has had my issues. I am 71 years old, have Lymphedema, Diabetes and am heavily overweight. With all my issues I haven't been able to lose weight.
The Lymphodema has caused my abdomen to hang down. It contains flesh and fluid as well as skin. The Panniculectomy would remove about 65 pounds. If any of you have had some or all of these issues I would love to hear about your experience.

Pilgrim060
ray.marilyn@sbcglobal.net

[Saundra]

I am a professional storyteller and writer, but this is one area I have had some difficulty talking about or even finding folks to share it with. Now I have you all and I must say it feels good to be 'in touch.'

At age 13, I had an incident playing kickball and ended up with a severly swollen foot; the edema eventually traveled all the way up to my knee and beyond and stayed that way. High fevers and pain that was diagnosed as juvenile arthritis, kept me out of school for most of that year. The swelling was never formally diagnosed - it was an 'I don't know,' kind of thing. Fat, straight, stiff legs pretty much kept me covered up for the rest of my school years to avoid ridicule.

I was diagosed formally with lymphedema at the age of 27 after the birth of my second child and began wearing compression garments. Still, I had never met or seen anyone, other than my maternal grandmother, with the condition (hers was never diagnosed as lymphedema, but I spent many hours cleaning and bandaging those swollen legs with the white fluid leaking from them.)

Sitting in an airport in Orlando, Florida I saw an article just lying on the seat near me. I picked it up and read the story of Sandy from Miami, and discovered the world of MLD. Through that experence I went down to the Lerner clinic in Ft. Lauderdale and tried it. While it was extremely expensive it was helpful to a degree, but never completely reduced the swelling or stiffness.

Back surgery in 1996 set off the left leg and when it was pumped for a compression garment the fluid traveled up into my abdomen and buttox but no further. I now deal with a really strange body shape that nothing has been able to resolve with swollen legs, arms and hands. Some folks say I still have a pretty face. Nice.

I am now sixty years old, uninsured and unable to afford new garments, MLD therapy, or the wonderful new aids I have read about on these pages, and my condition is worsening. All this to say, I have had a wonderful life but it seems to be closing in on me at this point, and I'm not sure what to do if anything else happens to complicate matters.

For those of you concerned about the heat - I left my home and all that I loved and moved to the mountains of Appalachia where it is cooler in the summer. I can't figure out which is worse: the heat in Florida or missing my family and my beloved swamps and old trees.:( but the mountains nuture the soul and that is what keeps me going.

[Linda]

You are definitely not alone in your story of lymphedema. Those of us who developed LE more recently have the advantage of being spared some of the really bad treatments that were used before CDT (complete decongestive therapy), which includes MLD, became available.

The ideal situation would be that you could afford, or had insurance to cover, an "Intensive." This is daily treatment with a qualified lymphedema therapist that usually lasts for weeks -- or months. In this process you are taught how to bandage, use self-massage, and the importance of exercise.

Once you've learned the necessary skills to control your swelling, you will be better prepared to manage your condition.

Until this is possible, learn as much as you can about lymphedema. Knowledge is power!

Linda
:)

[Saundra]

Thanks for responding to my missive about the lymphedema journey.

Fortunately, I discovered information about the intensive treatment and spent three weeks at a clinic in Ft. Lauderdale for MLD and bandage training some fifteen years ago.

Unfortunately, after many years of faithfully bandaging and managing to at least keep the situation in hand if not even close to perfect, the heat of it and the feeling of revulsion of my own body led me to largely abandon the practice - for that reason, I am somewhat responsible for the result. I continue to bandage periodically and am very, very good at it. I am also well-versed in self-massage and without those two things, might not be walking today.

The emotional component of this stuff often looms larger than life itself.

[missy98writer]

Since I was a baby I've had Ceribal Palsey that effected the entire right side of my body. My doctor at the time told my mother if I walked I'd never be able to run, skip, or climb stairs. I always limped, but at age 35 I used a cane to walk. For many years I was a medical mystery, both of my legs below my knees, ankles. feet, and even toes were 5 to 8 tines their normal size. But back in 1995 the doctors said I had Primary Lymphadema. Over the next couple of years we wrapped my legs, they went down a little, but the bloating below my knees on both legs, my massive ankles and even my toes were now 3 times their normal size. My legs wouldn't go down. In, fact in 2007 I gained a lot of weight, but it wasn't fat, but bloatingg all over my body. The doctor said I not only had Lymphadema but I had Elephantiasis. My legs were so large I quit walking. I could barely stand with a walker no longer than two minutes.
Later we found out why my legs weren't going down despite my wrapping, I was gaining weight too from co2 or carbon dioxide. Then back on May 25 when I was rolling to my side in bed, I turned gray and could barely breath let alone catch my breath. Sensing my distress and the fact I turned several shades of gray, my mom called 911. I was rushed to the ER at Deaconess Hospital in Oklahoma City, Ok. The doctors put me on oxygen, but my oxygen levels remained below 65%. I passed out that afternoon, my oxygen level dropped even lower so the Pumnologist had to intibate me. The doctors thought I was goint to die, and I almost did. I willed myself to live. Two weeks later I woke to find a trach in my neck and a ventlator attached to the trach in my throat. I was on life support to help me breath at 100%. A few days later the doctors did a Cat-Scan and discovered I had PPH or Primary Pulmonary Hypertension. So, my Lymphadema / Elephantiasis: was Secondary Lymphadema, not Primary Lymphadema. My Secondary Lymphadema was due to PPH or Primary Pulmonary Hypertension. To explain what PPH is see the web address: http://www.pulmonary-arterial-hypertension.org.
I lost over 85 lbs the two weeks intibated. The co2 bloated my body and I weighed 300 lbs. A few days later I went to another hospital: Select Specality Hospital. I spent 99 days there recoyperating and trying to get off a vent for breathing. I would have got out sooner after 38 days but my Pumnologist did a procedure and collapsed my right lung, the idiot! When the doctor had a nurse shove a tube down my right shoulder to reinflate my lung. It hurt like a bitch! The pain of reinflating a collapsed lung is beyond horrible! Also that day the doctors found out the port on my left arm was infected, I had a bad bladder/kidney infection, and that I had a case of Pnemonia in my left lung. Every 4 hours I asked for and got 6-8 mgs of Morphine for my pain.
On the 75 day of my stay at Select Specality Hospital, I wouldn't recommend the hospital to an amobea they sucked! More people left there in a coffin, but I left on a gurney. The entire time all 99 days I didn't receive any physical therapy. Only five times did the nurses and staff get me out of bed and into a chair. I left the place unable to sit, stand or even walk. I was a total invalid. I also was on oxygen, I'm now not on oxygen, but I use a bypap machine to help my PpH while I sleep. I recoperated at home for twelve weeks. Home health and Medicade sent nurses and physical thearipst to my home. I learned to sit and use a sliding or transfer board to get from my electric adjustible hi-low hospital bed to my manual wheel chair. Then I went to Valir Rehab Hospital in OKC, OK for 8 days and learned to sit for long periods and use a sliding or transfer board to get into my manual wheel chair. I went to Valir Rehab Hospital back in 2006 for ten days, and back then learned to stand and use a sliding board or transfer board. Since Valir Rehab this time used up all of my physical thearipy money, an alloted amount Medicare gives you, I no longer have a physical thearipist comming to my home. I have to wait until next year for physical thearpy. Via Oklahoma Medicaid or Sooner Care I have the Advantage Program because I have Cerabal Palsey, Lymphadema/ Elephantiasis, PPH or Primary Pulmonary Hypertension, and I have an underactive Thyroid. The agency my social worker, Roxy, via the Advantage Program uses is Ghirling Home Healthcare in OKC, OK. They alloted me 14 hours a week a Home Health Care Aid to come to my home and take care of my needs. The worker helps me take a bed bath, wash my hair, comb my hair, dress me, brush my teeth, help me on the bed pain when I poop, put on my diapers. I use adult diapers because I have an overactive bladder. I pee 25 to 40 times a day. The aid helps me get into my manual wheel chair with a transfer or sliding board. Over the years my aids at Ghirling sucked. The last one I had called in sick all the time. I she showed up she slept or got on the phone. She only gave me a bath and changed my bed. She worked 3 to 4 of her 14 hours and lied to get paid my full 14 hours per week. I finally had enough and turned her in. I found out the allowed a relative to get hired at Ghirling to work for you as an aid. My wonderful sister-in-law, Crystal, needed a job and agreed to work at Ghirling as my aid. She's a Godsend. She does her job and then sum! She helps me get up and in my wheel chair Mon, Wed, and Friday from 8:45 am til 2:00 pm sometimes a little later.
Heed my story, get many medical opinions and make sure you get a Cat Scan, if your health care insurance or Medicade won't pay for a Cat Scan, then borrow money to get the expensive and life saving test or scan. For over 14 years I was misdiagnossed. I had PPH or Primary Pulmonary Hypertension all along. My untreated PPH or Primary Pulmonary Hypertension caused my Lumphadema / Elephantiasis, underactive Thyroid, and other digestive issues . On top of al my medical problems I suffer with horrible stomach pain every day! I live on the pain killer Ultrum or Tramadol to help my pain. I'm allergic to many foods and food aditives. I'm Lactose Intollorant, highly allergic to MSG, and meat with Hormones, Steroids and chemicals. I eat Certified Organic Grass Fed or Grain Fed meats. I'm allergic to many processsed foods. I eat homemade food that for the most part is Certified Organic. The less processed the food is the better. My stomach pain is bad, but if I eat good food and stay away from processed and fast food then my pain is somewhat tollerable. I also eat a salad with my lunch and dinner for fiber and to keep my bowel movements regular. Sometimes from all my problems I have intense bouts of diaherra. After I wrap my legs, the next day I have diaherra.
I feel the power of prayer saved my life when I almost died. I'm an Agnotstic; a person that doesn't believe in organized religion. I do believe in God, Jesus, The Holy Ghost and the saints. The Bible is great, but too many Bible Thumpers take the Bible too literally. And for those folks thinking I'm going to Hell in a handbasked: Honey, I've have my handbasked packed for a very long time!
I also believe in myself. A healthy outlook on life keeps away any depression.
I believe in the USA, freedom of speech , the Constitution, ect! I feel if you don't believe in the USA: Then get the hell out.

Signed,
Missy living with PPH or Primary Pulmonary Hypertension, Lymphadema / Elephantiasis, Underactive Thyroid, Cerbal Palsey, and many food allergies. And what's so sad as of Feb. 27, 2009 at the age of 42 I have too many health issues and diseases. It could be worse.



__________________
Missy