Does anyone have Lymphedema ???

tammyfranks2

Symptoms of lymphedema include swelling in one or more extremities. The swelling may range from mild to severe and disfiguring.
That is how web MD describes it , but it is much worse then that, I have a basketball size knot at the top of my left leg and my left leg is 2x bigger then my right , and oh my they hurt sometimes so badly , the socks you buy to wear almost make it hurt worse . Even if i lose the over 200 pounds I need to lose .I still will have to have it surgically removed . I can not work it off or lose it off . MY left arm also is bigger . This is the main reason I can not workout right now , I need to lose more weight first , but I did get the rubber bands and I have been working out with them . I might be going to a clinic to have it looked at , to see what I will need to do to have the knot removed .

I don't go out to really nice places or dance or go to night clubs , because I have to wear soft clothe type of pants , and big legged pants so the knot is not so noticeable, so no dress clothes or dresses at all . So I stay at home, lot of times my husband takes my kids to the movies or they go hiking or to the mall and I have stopped going with them , it is just to hard and I feel like people are looking at me .
Just in this short amount of time , my legs do feel a little better , but it is going to take a long time to get back to normal , if that ever happens . It really Kills you wanting to have sex or feel sexy in any way , so it really messes with me and hubby , ya know in that department LOL If I knew 10 years ago how bad my legs would be , I swear I would have never let myself get this big or this out of shape .!!!!

Mellykay88

I don’t, but my younger sister does. She had a foot injury as a teenager and had to have surgery to repair the break. The surgery was not successful and she ended up with lymphedema in the leg. It causes her a lot of trouble and her doctors have pretty much said there isn’t much they can do. She refuses to wear any clothes that show her leg, it doesn’t cause her any pain I don’t think, but it is embarrassing for her.

bmeadows380

I don't have lymphedema, but I do deal with swelling at my ankles and lower legs - thankfully nothing that is as extreme as what some folks deal with! I was sent to a swelling center who gave me a machine to push the fluid out of my lower legs at first, then I was given prescription knee high constriction stockings until my insurance stopped paying for them - insurance said they'd only pay if you were diabetic or had congestive heart failure. Ever since I started wearing the stockings (it was 20-30 compression for the precription ones; when I started getting over the counter, I upped myself to 30-40), I don't have a problem with fluid build up much, and haven't had to use the machine in years.

I've never been given a medical reason for why they swell; I think its hereditary, though - I've noticed my cousins have the same problem. Though I did notice last time I lost a lot of weight, i didn't need to wear the stockings so much. This time around I don't think I've been as successful; but then again, my stockings are dress khaki or dress black so I just wear them without thinking much about it and haven't really tried going long term without them to see!

amy_kee

Thanks for sharing about your lymphedema @tammyfranks2 . I never knew about this medical condition, but, I've seen people in some stores that seem to have what you've described.

I hope you can get this looked at by your Dr. I hope there is something they can do for it.

Losing weight is still a great thing and should help you out in so many ways. Just try to take it each day at a time, and maybe make some weekly goals. I hope you stay with us and continue doing some movement each day, and gradually working on increasing it. Every little bit helps.

Keep us informed about what your Dr. says, and how you continue to do,

fatoldladyonamission

@tammyfranks2 I don't have any issues like that but I just wanted to say how impressed I am by your determination to keep going in really challenging circumstances. It's inspiring x

tammyfranks2

fatoldladyonamission wrote: »

@tammyfranks2 I don't have any issues like that but I just wanted to say how impressed I am by your determination to keep going in really challenging circumstances. It's inspiring x

Thank You so much !

theowlbox

I don't, but a lady at my gym does. She walks in the pool in the lane next to me as she is a nurse and by the end of her shift her legs have fluid buildup. If it is would be helpful, maybe give it a try? You can totally wear soft pants in then just grab a towel on the way out. Good luck to you!!

bmeadows380

I wish there was a public pool local to me! We don't even have a YMCA nearby

tammyfranks2

theowlbox wrote: »

I don't, but a lady at my gym does. She walks in the pool in the lane next to me as she is a nurse and by the end of her shift her legs have fluid buildup. If it is would be helpful, maybe give it a try? You can totally wear soft pants in then just grab a towel on the way out. Good luck to you!!

yep both doctors I see say swimming , but no way am I putting on any kind of bathing suit and going to a public pool . LOL it is the worse thing in the world people stare and ask stupid questions, like going to the GYM , fat people are shunned at the GYM (or at lease I am) no one will talk to you, like being fat is like having the flu , it is contagious. If I won millions of dollars I would start a Gym for Fat people only , with machines they could actually use and trainers who actually care!


plus the swelling in a real lymphedema is not just some swelling from working all day , My legs look awful , go put a basket ball between your legs and try to walk , Have ya ever been somewhere and see a woman who is like a 12 on top and then her butt and legs are just huge like a 4x , That is lymphedema , ever see a person with one leg so huge they have a wrap on it , but the other leg is regular size ?? that is lymphedema .... no amount of working out gets rid of it , it is cause by the blood flow in your legs , Now it will get better the more you move , not tighten all up and get sore. and the more I diet the less it seems to hurt.

But I see this on those shows my 600 pound life , those people always have lymphedema , large pockets of fat that hang off them , That is what i am talking about .

bmeadows380 wrote: »

I don't have lymphedema, but I do deal with swelling at my ankles and lower legs - thankfully nothing that is as extreme as what some folks deal with! I was sent to a swelling center who gave me a machine to push the fluid out of my lower legs at first, then I was given prescription knee high constriction stockings until my insurance stopped paying for them - insurance said they'd only pay if you were diabetic or had congestive heart failure. Ever since I started wearing the stockings (it was 20-30 compression for the precription ones; when I started getting over the counter, I upped myself to 30-40)

this is more then I ever could get anyone to do , I would love to have a machine like that , I may ask my doctor about it.The only thing they do is wrap them and then you can't do anything LOL but sit there . walking just to the bathroom makes them move down . compression socks I would wear if I ever could find a pair that fit . Maybe after I lose way more weight I could get into a pair .

tammyfranks2

this is more then I ever could get anyone to do , I would love to have a machine like that , I may ask my doctor about it.The only thing they do is wrap them and then you can't do anything LOL but sit there . walking just to the bathroom makes them move down . compression socks I would wear if I ever could find a pair that fit . Maybe after I lose way more weight I could get into a pair .

tammyfranks2

I am sorry , I hope i didn't sound mean or rude , I am very angry , at myself , at the doctors and at the way people treat me and anyone who is overweight . my daughter is not over weight but disabled and she gets made fun of too sometimes , and it really just gets me . The stares , the little off hand remarks , it;s like you want to scream I am trying . Also how doctors treat me , like well lose weight and all your problems will be over , and that is just not true . YES it is helping , and YES I will be better for it . But just telling someone to lose weight is not going to make it happen . I have spent 1000's on test and meds and treatments , and This , what I am doing now is the only way I see , that I am going to actually get better !!!!

bmeadows380

Oh, that's okay - you didn't sound rude to me; just incredibly frustrated!

I got the machine from a group called Compression Management Services around Pittsburgh, PA. When I was first sent to them by my doctor in 2005 because my ankles and calves were swelling so much, they put me on the machine and had me use the bandage wraps until I got the worst of the built up fluid out. Then they measured my legs for customer constriction stockings. Of course the stockings are tight and can be a bear to get on, but they did the trick for me and I didn't have problems with fluid build up in my legs as long as I wore them during the day.

the machine was a big boot, essentially, that extended up to my hip and had air chambers that filled up as progressed up your leg to essentially push the fluid out. I only used it the first few weeks before I got my stockings and then I never used it again. It's in a box somewhere in my dad's garage!

I had attributed the fluid retention to my weight, but the doctor and the technicians at the center both said that wasn't necessarily true. However, when I lost 90 lbs the 1st time, I noticed a marked improvement - I could go a couple days without the stockings and not have bad build up, so I think I was right. I haven't tried going without the stockings much this time around, but its winter time and I like the extra insulation they provide lol

I know what you mean about doctors! thankfully, I've only ever had one who did that to me. I had one PCP trying to figure out why I had swelling in my legs as she too didn't believe it was necessarily caused by my weight. She sent me to get an echo cardiogram, but the hospital where I had it done didn't have a good lab tech and it came back as inconclusive but possibly pulmonary hypertension. She arranged for a second echo at a different hospital, but in the meantime sent me to a sleep apnea clinic. The results came back as borderline apnea so of course they recommended a machine, but in the meantime, the apnea doctor was quite rude and he just looked at me and said "get bariatric surgery".

I tried the machine for 4 months and hated every minute of it as I felt like I was being smothered and was forced to sleep in a position that I was uncomfortable in, and I woke up more tired and exhausted than I did if I slept without it, but the doctor wouldn't' lower the pressure setting any further than it was set at, so I eventually just quit using it and gave it to my dad who's machine had broken (my dad actually stops breathing at night and needs a machine as he has bad sleep apnea). I especially dropped it after the second echo came back showing no signs at all of hypertension!

Thankfully, my former doctor and my current one were both very kind and supportive. they didn't say anything about my weight and took my complaints serious, but when I did lose weight they were very excited and supportive. In fact, I love my current doctor so much that I'm not going to switch even though I've moved 4 hours away from her office! I figure I only see her about twice a year, so I can make that drive 2 times a year

cnavarro002

@bmeadows380 I have a question re: the compression socks. I used them once or twice a few years back, but I felt as if they were cutting off my circulation. Eventually I was better and didn't need them. However I recently had a total knee replacement and since going back to work my whole leg and ankle swells up by the end of the day. I think I need to start using them again, but I am afraid of using them for 9 hours+ because they do get so tight. I would love your insight on this. Thanks!

bmeadows380

The main problem I have is they do have a tendency to ride down and pinch at my ankles, and thats when they feel like they are cutting the circulation off, so I have to periodically pull them back up during the day. Also, if the top band's hem comes loose, they'll feel like they're digging in at my knee, so that's when I have to buy a new pair.

I don't know what compression you started at, or if you are buying them over the counter or getting them from your doctor. The ones that I was getting by prescription (until my insurance quit paying for them) were made specifically for me per leg - the compression office would actually take measurements of my leg to get a custom fit.

When I started going over the counter for them, I made sure to match my calf measurements as close as I could to the package directions. I also found I had to go up a range in pressure to get the same benefits.

I use the JOBST brand exclusively and have been well pleased with them - they hold their compression well, even after months and years of use, and they wear slowly.

@cnavarro002 what size compression did you use and what style of stocking? The ones I use look similar to tights and don't look like a cotton sock. You can get all kinds of different styles, though, from ones that look like athletic socks to ones that look like panty hose material, and there are several different manufacturers. They usually start at 10-20 mHg compression for light compression, 20-30mHg for medium, and 30-40mHg for strong compression. I use the strong compression ones and they keep almost all the extra fluid out of my ankles and lower legs - but they are difficult to get on!

I'd suggest perhaps trying a different style of stocking at a lower compression to see if that helps ease the fill of the circulation being cut off, and then only increase compression if the lower level doesn't seem to be doing the job.

Best of luck to you! I know how uncomfortable it is to have that swelled feeling in your lower legs and ankles!

tammyfranks2

cnavarro002 wrote: »

@bmeadows380 I have a question re: the compression socks. I used them once or twice a few years back, but I felt as if they were cutting off my circulation. Eventually I was better and didn't need them. However I recently had a total knee replacement and since going back to work my whole leg and ankle swells up by the end of the day. I think I need to start using them again, but I am afraid of using them for 9 hours+ because they do get so tight. I would love your insight on this. Thanks!

Yes I even buy my socks from a company lymphedemaproducts. com , I had a profession person measure me and sent in those sizes and they still are just to tight , after about 3 hours I am in real pain and they have made red marks and dents in my legs . So yeah I do not use them , but everyday they are coming up with new stuff , give this store a look , maybe find a different way to wear them , or a new kind of sock . they have compression arms sicks too.

so i don't know what I will do , just wait i guess until my legs are way smaller , or go back to having them wrapped , at the rehab place .

you know energizing panty hose might work to work in , help keep the swelling down.

cnavarro002

@bmeadows380 & @tammyfranks2 thanks for your responses. I have not been to a doctor, and I only bought them at my local pharmacy over the counter. It's just that the last few days my swelling has been so bad that it is affecting my walking/exercise. Is this something that I would need some kind of prescription for to get them custom made?

bmeadows380

to get them custom made, yes, I think you'd have to have a prescription. You can also try Amazon - I've found a much better variety there and the prices are much better for the over the counter stuff!

tammyfranks2

@cnavarro002 I know I can just order from lymphedemaproducts.com , and do not need a prescription , BUT to get a correct size and measurement you may want a rehab doctor or your own doctor do it . and maybe guide you into which kind you should buy . IF you want insurance to pay Then YES i would think you would have to have a RX to get them. hope that helped.

cnavarro002

Thanks ladies! I'll definitely speak to my dr. about it. On a good note (and wayyy to much tmi) I literally lost 4.7 lbs of pee in the last 2 days. Hopefully that helps too! I'm also going to start REALLY keeping an eye on my sodium intake. I usually glance at it, but it's time to take things seriously now.

Thanks, you guys are awesome!

tammyfranks2

ok this huge sack on my upper left leg , is hanging , and I am in so much pain , got heat rash from hell . my blood sugars are so close to normal, it is crazy how well it is doing , so why am i am so much pain and not losing . I want to go to this medical diabetes program , but my doctor has not sent a referral yet . If I can be seen there , I can talk to a doctor about having this thing removed . lymphedema, is the worse , i would rather be sick , (something that can heal up) then this condition . Wed night I am to go up to my son's boy scout camp and eat diner with him and watch their program they do and he is getting asked to join the OA(order of the arrow) and it is an awesome thing , and here I am worried about going , because of my legs hurting so bad and the heat rash growing . I wish I could wave a magic wand and be 100 pounds lighter , or the sack gone , either one ! Thanks for listening .

bigghunny

@tammyfranks2 I would be calling that Dr everyday bugging the *kitten* out of him till he gets that referral done!!! You cannot take the risk of infection because of your diabetes. It's a health risk for you if you let it get worse. Do you powder your body so it stays dry if you sweat? Can you wrap the lymphedema so it doesn't rub against your inner thighs? I'm sorry you are having such pain and discomfort. Hope you ride the Drs as* and he gets you in as soon as possible. If not report him. YOUR HEALTH MATTERS

tammyfranks2

bigghunny wrote: »

@tammyfranks2 I would be calling that Dr everyday bugging the *kitten* out of him till he gets that referral done!!! You cannot take the risk of infection because of your diabetes. It's a health risk for you if you let it get worse. Do you powder your body so it stays dry if you sweat? Can you wrap the lymphedema so it doesn't rub against your inner thighs? I'm sorry you are having such pain and discomfort. Hope you ride the Drs as* and he gets you in as soon as possible. If not report him. YOUR HEALTH MATTERS

yes I am calling as soon as the office opens , I do use powders and the RX cream the OBGYN gave me , it helps but if I am out of the house doing stuff , that's when it gets so bad , I going to try and wrap it up today , I have my old wraps from my lower leg , heck give it a try . get some relief . Thanks so much !! it helps to vent LOL.

PloddingTurtle

((hugs)) @tammyfranks2. I just ache at these updates and wish there was something I could say or do that would be helpful. I'm rooting for you, and thinking of you, sending positive energy your way. I hope you can get the referral you need and get some positive action on your legs.

tammyfranks2

PloddingTurtle wrote: »

((hugs)) @tammyfranks2. I just ache at these updates and wish there was something I could say or do that would be helpful. I'm rooting for you, and thinking of you, sending positive energy your way. I hope you can get the referral you need and get some positive action on your legs.

Thank You so much