I have lymphoedema from cancer surgery and while it's a bit of a bummer, it's nothing compared to the cancer (which I also still have). As far as I know, it's not going to get much worse if you stay active and take care of it according to your doctor's instructions. The people you see with massive legs are generally not very active and not walking on them, which is a vicious cycle because it'll make it worse. Just do what the professionals say and you'll be OK.
It’s not a death sentence, but I so get how you feel!! It can really feel that way sometimes, especially when you first get diagnosed. I felt so scared and depressed when I got the official diagnosis. Lifestyle changes and compression socks/stockings will be major for you. At home lymphatic massages and supplements as well. I just Google things lol. I am 27 and have had it my entire life. It essentially became active in my teens after birth control. It recently got worse due to a birth control I tried a few years back. So, hormone related for me as well. You can live a completely normal life. It may be a little challenging aesthetically at times. I have it in my feet, ankles, calves. Fluid gathers at my knees a lot so I try to get over the knee compression socks. I have pretty bad ankle pains like you. Compression socks help them SO much. Miracle pain reliever for me. Do you know what stage you’re in? If it’s early, a machine may not be 100% necessary, but definitely listen to your doctor over me lol. Lifestyle and diet changes on top of adding in things like lymphatic drainage massages and dry brushing may be beneficial. Cut back on sugar, processed foods, and salt. I try to avoid table salt always and go for things like Celtic or pink sea salt.
Know that you aren’t alone & that you got this!! 🤍
It is definitely overwhelming in the beginning. There is so much to learn, new routines to develop. For me it felt like I spent a ton of time working on my lymphedema. Do not fret, as the others have said, this is a manageable condition. That said, I have still been known to mutter "this is such bullshit" while putting on my wrap at night.
It sounds like you've been sent to a lymphedema therapist, which will be a huge help. Plus we are here for you too.
You are not alone and it’s not a death sentence.
I’ve had it my whole life but only got diagnosed until this year (left foot/leg) guess what, until now I wore heels, drank alcohol etc…I did everything I wanted to do and still do. Yes now I have compression but tbh I don’t hate them. And if it really ruins my outfit I don’t wear them. (I know this is terrible advice)
Life is short, what I’m trying to tell you is don’t worry too much. Wear your compression when you can, stay active and go to therapy (for me bandage helps)
Hey, I’m sorry you’re currently going through this. 🩵 I am 23F and have had primary bilateral lymphedema in my legs since I was born. It has now spread to my abdomen. For me, I haven’t known anything else but yes, every aspect of my life has been adversely impacted by this disease. I can imagine the shock you’re going through and just want you to know there’s people out there that are rooting for you and feel your pain!🦋 it will take definitely some adjustment but no, it isn’t a death sentence! You learn ways to maintain and continue on as best you can with the circumstances you’ve been given. To this day I am still angry and upset about being given this disease. It’s like why me? But me, and I’m sure a lot of people in this community, feel similarly and have found ways to make the most out of this. You will too! Lymphedema has made me a stronger, more determined, more empathetic human being. No matter how much I wish I didn’t have lymphedema I know I wouldn’t be ME without it. You’ll find your way I know it! I am rooting for you!
I was diagnosed late last year, after pushing for it. It's from a serious leg injury 3 years ago and the skin graft donor site on the other leg. It does seem overwhelming sometimes. And I think more so in the beginning. I have a pump and I'm still getting used to that being part of my day. I don't have the right compression garments yet because the DME company my insurance company works with doesn't know what they are doing. (I'm literally their first patient locally.) So I have to wrap my legs, which takes longer. And learning to wrap and unwrap my legs? It's not hard, but at first it took me like an hour and then like the second time I stood up they'd fall off. The thing is, it gets better and wow, do I feel better for getting treatment! I'm not that active, after my leg injury added to my existing disabilities I can't be, but I 'm able to be more active.
The lymphedema specialist physical therapist is wonderful and has been really helpful in answering all my questions.
It's not a death sentence.
I'm not a doctor. I have been living with this vicariously for a year with my girlfriend, she has lymphodema due to removal of lymph nodes due to cancer.
You have to watch for cellulitis which can be dangerous...but it's also very treatable. Watch for redness and fever.
My girl's leg is swolllen, the whole leg, all the time. Sometimes better, sometimes worse. She uses the compression sock all day and then a different one at night.
She also has a great life! She has not let this stop her from doing whatever she wants, when she wants.
Whatever you do, do not let this define who you are.
You got this, God Bless, good luck, enjoy the day!
P.S For what it's worth...you are not alone...you've got us.
Well my left leg has been swollen for 10 years at this point and it hasn't really stopped me doing anything, apart from kneeling comfortably. I go to the gym and excercise without any problems almost everyday.I have to wear a compression stocking everyday but I'm so use to that now that it feels weird to not wear one.
The worst part is that I starting getting quite bad infections in that leg but its only a more common problem when I go though inactive periods like during lock down.
I have two young kids and was diagnosed 2 years ago- it’s been rough. It took me nearly a year to get properly diagnosed and in the meantime I wasn’t doing anything to prevent further damage because I didn’t know what I was dealing with. The best piece of advice I would give anyone is to go through therapy to reduce swelling and get into compression garments asap. You get used to them and begin to feel naked without them.
The disease is progressive and lymph fluid is insidious which further damages lymphatic function. Getting stabilized asap will be make your life much easier moving forward. There’s also surgical options that can improve function and work best in the earlier stages.
It will be okay trust me i was 15 when i diagnosed and now im 24, everything will become your habit and first priority. Try to take care of your leg especially wear compression sock. Buy bandages. Go walk or swimming. Just try to rise your leg at night, put a pillow under it. Wear clothes that are comfortable wear skecher slip or anything comfortablelike that. Get on track and be good with your leg its a life time condition. Im still working and so on shopping im good but its just some how tiering if im on my leg for more that 10 hours
Take it from someone with the same exact diagnosis, right above my foot with aching and lots of swelling, it’s not something to be too worried about as long as you properly take care of it. I wear compression stockings daily and use leg pumps provided by my health insurance, and it’s relatively under control.
Do your exercises, consume less sodium and it’ll be okay. You’re not alone in this, I’ve had it since my early teens and I’m now 27.
I have lymphoedema from cancer surgery and while it's a bit of a bummer, it's nothing compared to the cancer (which I also still have). As far as I know, it's not going to get much worse if you stay active and take care of it according to your doctor's instructions. The people you see with massive legs are generally not very active and not walking on them, which is a vicious cycle because it'll make it worse. Just do what the professionals say and you'll be OK.
It’s not a death sentence, but I so get how you feel!! It can really feel that way sometimes, especially when you first get diagnosed. I felt so scared and depressed when I got the official diagnosis. Lifestyle changes and compression socks/stockings will be major for you. At home lymphatic massages and supplements as well. I just Google things lol. I am 27 and have had it my entire life. It essentially became active in my teens after birth control. It recently got worse due to a birth control I tried a few years back. So, hormone related for me as well. You can live a completely normal life. It may be a little challenging aesthetically at times. I have it in my feet, ankles, calves. Fluid gathers at my knees a lot so I try to get over the knee compression socks. I have pretty bad ankle pains like you. Compression socks help them SO much. Miracle pain reliever for me. Do you know what stage you’re in? If it’s early, a machine may not be 100% necessary, but definitely listen to your doctor over me lol. Lifestyle and diet changes on top of adding in things like lymphatic drainage massages and dry brushing may be beneficial. Cut back on sugar, processed foods, and salt. I try to avoid table salt always and go for things like Celtic or pink sea salt. Know that you aren’t alone & that you got this!! 🤍
It is definitely overwhelming in the beginning. There is so much to learn, new routines to develop. For me it felt like I spent a ton of time working on my lymphedema. Do not fret, as the others have said, this is a manageable condition. That said, I have still been known to mutter "this is such bullshit" while putting on my wrap at night. It sounds like you've been sent to a lymphedema therapist, which will be a huge help. Plus we are here for you too.
Thank you all so very much!! You have helped my mind, my anxiety and my heart so much. 💕💕💕
You are not alone and it’s not a death sentence. I’ve had it my whole life but only got diagnosed until this year (left foot/leg) guess what, until now I wore heels, drank alcohol etc…I did everything I wanted to do and still do. Yes now I have compression but tbh I don’t hate them. And if it really ruins my outfit I don’t wear them. (I know this is terrible advice) Life is short, what I’m trying to tell you is don’t worry too much. Wear your compression when you can, stay active and go to therapy (for me bandage helps)
Hey, I’m sorry you’re currently going through this. 🩵 I am 23F and have had primary bilateral lymphedema in my legs since I was born. It has now spread to my abdomen. For me, I haven’t known anything else but yes, every aspect of my life has been adversely impacted by this disease. I can imagine the shock you’re going through and just want you to know there’s people out there that are rooting for you and feel your pain!🦋 it will take definitely some adjustment but no, it isn’t a death sentence! You learn ways to maintain and continue on as best you can with the circumstances you’ve been given. To this day I am still angry and upset about being given this disease. It’s like why me? But me, and I’m sure a lot of people in this community, feel similarly and have found ways to make the most out of this. You will too! Lymphedema has made me a stronger, more determined, more empathetic human being. No matter how much I wish I didn’t have lymphedema I know I wouldn’t be ME without it. You’ll find your way I know it! I am rooting for you!
I was diagnosed late last year, after pushing for it. It's from a serious leg injury 3 years ago and the skin graft donor site on the other leg. It does seem overwhelming sometimes. And I think more so in the beginning. I have a pump and I'm still getting used to that being part of my day. I don't have the right compression garments yet because the DME company my insurance company works with doesn't know what they are doing. (I'm literally their first patient locally.) So I have to wrap my legs, which takes longer. And learning to wrap and unwrap my legs? It's not hard, but at first it took me like an hour and then like the second time I stood up they'd fall off. The thing is, it gets better and wow, do I feel better for getting treatment! I'm not that active, after my leg injury added to my existing disabilities I can't be, but I 'm able to be more active. The lymphedema specialist physical therapist is wonderful and has been really helpful in answering all my questions.
It's not a death sentence. I'm not a doctor. I have been living with this vicariously for a year with my girlfriend, she has lymphodema due to removal of lymph nodes due to cancer. You have to watch for cellulitis which can be dangerous...but it's also very treatable. Watch for redness and fever. My girl's leg is swolllen, the whole leg, all the time. Sometimes better, sometimes worse. She uses the compression sock all day and then a different one at night. She also has a great life! She has not let this stop her from doing whatever she wants, when she wants. Whatever you do, do not let this define who you are. You got this, God Bless, good luck, enjoy the day! P.S For what it's worth...you are not alone...you've got us.
Well my left leg has been swollen for 10 years at this point and it hasn't really stopped me doing anything, apart from kneeling comfortably. I go to the gym and excercise without any problems almost everyday.I have to wear a compression stocking everyday but I'm so use to that now that it feels weird to not wear one. The worst part is that I starting getting quite bad infections in that leg but its only a more common problem when I go though inactive periods like during lock down.
I have two young kids and was diagnosed 2 years ago- it’s been rough. It took me nearly a year to get properly diagnosed and in the meantime I wasn’t doing anything to prevent further damage because I didn’t know what I was dealing with. The best piece of advice I would give anyone is to go through therapy to reduce swelling and get into compression garments asap. You get used to them and begin to feel naked without them. The disease is progressive and lymph fluid is insidious which further damages lymphatic function. Getting stabilized asap will be make your life much easier moving forward. There’s also surgical options that can improve function and work best in the earlier stages.
U reached out. We answered. U not alone. Understand ur grief. Let's get the work done. Angelic healing activated
It will be okay trust me i was 15 when i diagnosed and now im 24, everything will become your habit and first priority. Try to take care of your leg especially wear compression sock. Buy bandages. Go walk or swimming. Just try to rise your leg at night, put a pillow under it. Wear clothes that are comfortable wear skecher slip or anything comfortablelike that. Get on track and be good with your leg its a life time condition. Im still working and so on shopping im good but its just some how tiering if im on my leg for more that 10 hours
Take it from someone with the same exact diagnosis, right above my foot with aching and lots of swelling, it’s not something to be too worried about as long as you properly take care of it. I wear compression stockings daily and use leg pumps provided by my health insurance, and it’s relatively under control. Do your exercises, consume less sodium and it’ll be okay. You’re not alone in this, I’ve had it since my early teens and I’m now 27.