Hello, lymphies! My name is Alexa Ercolano, and I have primary lymphedema in my right leg.
In 2011, I created this blog as a way to cope with my diagnosis; today, it’s evolved into a means to educate, connect, and support lymphedema patients and advocates across the globe. It’s also a means of spreading awareness of lymphedema to those who maybe aren’t so aware, with the hope that one day no one will go without treatment or care simply due to lack of awareness.
My lymphedema story
I’ve had symptoms of lymphedema since I was an infant, and although my parents took me to a number of doctors and specialists, no one knew why my leg was swollen or what to do about it. This lack of information and awareness turned into almost fifteen years of my living with untreated, undiagnosed lymphedema.
Before my diagnosis (and even for a few years after), I used to think my lymphedema was secondary: I had corrective casts on my legs when I was an infant, so I assumed one had been applied too tightly, thus damaging the lymphatic system in my right leg.
Today, my lymphedema therapist believes my lymphedema may actually be primary. Because I went so long without a diagnosis, however, we just don’t know for sure how I developed my lymphedema or whether it’s primary or secondary.
The ambiguity and lack of answers are, unfortunately, a frustrating and common reality for many of us living with lymphedema. But I believe we can change that together: we are our own best advocates, after all.
If you have any questions about me or the blog, please check out my FAQ page. You can also send me an email using the contact form.
A Quick Note
Although I’m pretty knowledgeable about the feelings that come along with having this disease, I’m by no means an expert on lymphedema — I am not a doctor. If you are seeking medical advice, please consult your doctor or lymphedema therapist pronto.
Interviews, Conversations, and Presentations
Get to know me further! Check out some interviews and presentations I’ve done over the years:
- Alexa Ercolano on the Challenges and Misconceptions of Life with Lymphedema (Devon Medical Products, 2012)
- Catching Up With Alexa Ercolano, of the Lymphie Life (Devon Medical Products, 2015)
- The Language of Lymphedema (National Lymphedema Network Conference, 2019)
- Stay Elevated™: The Alexa Ercolano Interview (Medical Solutions Supplier, 2021)
- Episode 61: Happy Birthday The Lymphie Life Blog!! (Lymphedema Podcast, 2021)
- Episodes 68-70: Community vs. Comparison Part One | Part Two | Part Three (Lymphedema Podcast, 2021)
- The Lymphie Life interview with Pandere Shoes (2021)
- Interview with Alexa Ercolano, Founder of The Lymphie Life – Pandere Shoes (2021)
Hi!
I’m 16 and I’ve also had lymphedema since I was an infant. I was born with it in my left leg. I’m really happy to find you. I understand everything you said about how little things like finding shows turn into a big issue. I always hate when dances come around and I never go because I feel too exposed in a dress with my leg showing. I can’t talk to anyone about it. I also hate how I’m always having to explain it to people, or if I ever find a guy I really like before we go anywhere with our relationship I have to tell him about this condition that no one has even ever heard of. It’s lonely. But I’m working through it. Thats way cool that you made a blog about it. Well talk to you later :)
Hey, Allyson!
I’m so glad you found the blog, and I hope you comment on it often :) I hate how lonesome and isolated this condition makes us feel, which is why I made the blog – so those of us with it can feel less lonely, and realize that there are so many of us out there and we just don’t know it!
I’m sorry you have this condition, but hopefully we can all help each other feel a little less alone and a lot more positive about ourselves, now that we’ve found each other!
Be well <3
Hello to all who have come across this blog and suffer from lymphedema. Alexa I must say I am grateful to you for starting this and I am especially grateful to have found it. I got lymphedema when I was a sophomore in high school but was never officially diagnosed with it until I was a freshman in college. Part of what makes this so frustrating for me is that I don’t know what caused mine. I woke up one morning and BAM permanent swelling for the rest of my life. I have not had injuries or radiation from any kind of cancer so the questions still linger for me as to why and how. I can relate to the feelings of loneliness and the frustration of trying to explain to people who have never heard. I am not comfortable wearing shorts or dresses in public and it breaks my heart that I am limited because of this insecurity. I hope that one day awareness is made and we can continue this fight. and to the ones who have already expressed concerns here on this blog remember we are no longer alone! :) I hope others venture their way here and we can continue to encourage one another! Thanks for it all!
Amy, what kind words! Thank you so much, and I’m glad you found the site :)
I’m sorry that you have to deal with lymphedema – it’s something that no one should have to suffer with. The hyper-awareness it brings to ourselves and our body image is sometimes unbearable and oftentimes exhausting, especially when you feel like you’re going through it alone. However, I DO believe it makes us that much stronger. We live in a world where there is hardly any awareness of our disease – even in some medical communities! – and we have to keep fighting for ourselves and our health because there aren’t many people out there who are fighting for us.
Be well, and come back often! <3
Hi Alexa. Nice to find your website and blog. I’m a new lymphie at 67. The lymph nodes in my right groin were removed because they were swollen and then were found to be cancerous. (I learned a new phrase: ‘excise biopsy,’ where the organ is removed first, and then the reason is determined afterwards.) So now I have lymphedema in my right leg. I was getting pretty bummed because simple management seemed to be a loosing game as the lymphedema is spreading. So I finally decided to take some action: first research, especially about nutrition. Now I am going to look into acupuncture and/or Ayurvedic medicine. Acupuncture and Chinese herbs did what Western medicine could not several years ago when I had chronic fatigue. BTW, Ayurveda is the (eastern) Indian ancient form of medicine and diet is a major part of it. I will let you know if there are any significant developments.
Hello Alexa, my name is melanie, I am a 33 canadian women with primary limphedema in both of my legs. It is so refreshing to find someone like you who talks about lymphedema. We have all a story to tell and I feel that with you, here on your blog, we are not alone :) thank you for sharing all your moments with us!!!
Melanie, you’re so sweet! I’m glad you found my little corner of the internet :)
Found this like via Facebook and already don’t feel quite so alone. I am 42 and the end of last year, I was diagnosed with Lymphedema. I guess I am pretty blessed since it appear that It has been caught early as really the only signs were painless swollen ankles and constant painful feet on walking long distances and my legs looking pretty much like they had been punched constantly. Doctor said it was just bad circulation and it was only at my insistance on being looked at by the right people; that he told me the bad news. I am afraid that I broke down into tears as I saw my sexuality disappear! Thankfully, (I live in France), they make super sexy compression stockings and lol even my sister – who expected really horrible brown/biege colour, was astounded with how fantastic they look. My big issue really is the heat and I am afraid I am naughty in that I don’t wear them when too hot, but find I have to raise my feet and actually see the swelling around my ankles calm down, so really I am one of the lucky ones in that my legs look normal and can wear dresses and skirts still, but I do confess to suffering from vanity and am ashamed of the colour of my legs!!
I’m really glad you found the site, Suzanne! You’re never alone, despite it seeming that way. Lymphedema can be such a lonely disease – it makes you isolate away from others, and you rarely meet other people who have it. But you have now, hooray!
It sounds like you’ve got a healthy outlook towards your legs (and your sexy compression stockings probably help that, too)! I hope you keep that up, because that’s almost as important as wearing your garments :)
What caused your lymphedema Suzanne?
Hello! Alexa,
Thank you! for starting this blog. I’m a 55yr. old African-American woman with lymphedema. I’ve had it ever since I was nine years old. It runs on my mom side of the family, she has it, her mother had it and so did my aunt. I had the dye test when I was young to find out why the swelling in my foot didn’t go down when I sprained it playing at school. It’s so nice to find others who are have lymphedema and all the information on the internet to help us with this.
We can share all our information and finding about this disease. I find now since I’ve gained so much weight and the foods I eat make me feel sluggish. I want start a better diet especially lighter food and I will invest in that “Nutribullet” to make healthy fruit & veggie drinks. Also I join “CURVES” to helped with my circulation and health.
Hi, Erma!
I’m so glad you found the Lymphie Life. It sounds like you’re being very proactive in taking care of yourself by watching your health and weight – that’s wonderful! I wish you all the best and you’re welcome to keep us posted on how things are working out for you!
Alexa
I enjoy you because of your whole work on this blog. Gloria delights in doing investigation and it is easy to see why. Many of us hear all concerning the compelling way you offer practical guides through your blog and even welcome response from other people about this area then our own girl is becoming educated a great deal. Take pleasure in the rest of the year. You are always carrying out a useful job.
I am so happy to find your blog. I, too, have lymphedema in my right leg. Mine was caused when my knee hit the dashboard in an auto accident. I have been searching for alternatives to the heavy, bulky, hot, and flat out boring compression garments they keep putting me in. So if you find anything, let me know!
I am a breast cancer surviver and have lymphemdema. It is so hard to find thing about it or people who even know about it. I have learned most of what I know by looking it up on the web. I wear a sleeve every night to bed in call it my oven mitt. Thanks for being here.
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I had a uterine cancer removed last year, and as part of that procedure, my entire right side groin lymph nodes were taken (they did not need to be! – but nobody cared to do enough research/exams/cure, and that’s what saddens me, i.e. surgeries prevail in the US over cure). So, as the result of that and a severe flu this year, I got a right side (groin- leg) lymphedema. It is not as noticeable for others, but for me is a great deal!
Therefore, I am so happy finding you, sisters in suffering through this problem, and keeping positive. I am especially content to meet here people from different countries. I am originally from Ukraine (Donetsk, in fact!) and have been living in the US for the past 20 years now…..
I love all of you, my lymphie- new sisters, and wish you the best of improvement in your condition!
Tamara
I’m a 58 yr old mom of 4 who was just diagnosed with primary lymph…just left foot and ankle. It’s been 1 year since I went through massage tx and learned to wrap and wear compression stockings. The harder thing is that my youngest child – 17 yr old Maria – was just diagnosed with the same thing. For her it’s both feet and ankles (even calves)…she hasn’t started Lymphatic massage yet (there’s only 1 OT in our area who does it and a looooong waiting list), but I feel very sad for her. No more skinny jeans, no more long jeans in general and she’s not a skirt/dress girl…she’s quiet and embarrassed about how big her feet are. Does anyone have advice on teen clothing and shoes? She will be working this summer in a clothing shop…what can she wear that will cover her legs up?
Me – I am past all that and have no issues with the stockings…except that I would like to paint the stockings but have no idea if the material will take fabric paint. Has anyone tried it?
Thank you for your help!!
Sher
Try bright life direct.com juzo colors
Hi there. Lived your coverage of Isa-bella! My daughter has Parkes Weber Syndrome as well, but we are unaware of any lymphedema aspects (as of yet?). Just starting this journey & have reached out to Isa-Bella as well.
Take Care.
Hi,
I was diagnosed with Lympedrma last year. About 3 yrs ago I noticed my ankle was swollen and it lasted about 2 weeks. It would come and go and I was told that maybe it was the heat but after a few Dr visits I was finally referred to a specialist that diagnosed me with Lymphedma. I had cancer at 21 and had a hysterectomy, That was 21 yrs ago and here are the results of that now. I cried in the car after I was diagnosed because I felt like, why me???? I have to wrap my leg every night and in the mornings the swelling goes down significantly or is gone but it starts to swell during the day, especially if I have shoes with straps or even ankle socks will make it worse. No one really notices unless I point it out but sometimes I feel like EVERYONE is just focusing on my leg and it makes me feel very self conscious. I’ve tried taking vitamins but they make me feel sick, I got tired of juicing and now I soley rely on the wraps.
Thanks for starting the blog, finally people that could relate to what I’m going through.
Gloria, I hope you’ve found help now. I didn’t use compression stockings for years because they creased at the ankle and seemed to make it worse and were so uncomfortable, but they’ve improved them, I’ve improved my patience, and they do help. In the heat I wet the outside of them. I hope you can start wearing them in the daytime if you haven’t already.
Hello, my name is Susan. I am 62 years old. When I was 25, I developed a myoleiosarcoma in my right leg. I underwent cobalt radiation at the City of Hope for six weeks. It left a severe burn under my right butt cheek but, otherwise, no ill effects. When I was 32, I began to develop some swelling around my right knee and ankle but, elevating my leg over above my heart would bring relief. No problems, really until I turned 48. I was always very active, skiing, scuba, golf…and on a hike, without proper shoes(!), I cut my heel on my right foot. I developed a severe case of cellulitis that put me in intensive care. My leg swelled and never really decreased much in size after this. This was the first time I heard the word lymphedema. Learning leg wrapping, getting fittings for heavy duty compression stockings and learning how to massage and exercise my leg was, truthfully, depressing. I was a high school biology teacher. I remember starting the school year, that year, (2001) with my leg all wrapped up like a huge tree trunk. But, teaching biology, I was able to turn it into a ‘teachable moment. As time went on, it felt like the muscle in my foot was shrinking. It didn’t seem to sit flat on the floor any more and I developed a small limp. Pins and needles were also aggravating. Between 2001 and 2005, I had cellulitis 4 times, once from a blister on my foot, once from a cat scratch on my leg, once from scratching a mosquito bite and, I forget what else. Over time, I began to lose balance and fall more frequently. In 2007, I slipped and broke my femur in my right leg. I had a titanium rod put in place. As a result of the radiation, the bone had osteoporosis, the nerves (fried) and muscle had atrophied and my lymphedema was more severe. In 2011, the rod in my leg became infected. It was difficult, for who knows what reason, to diagnose. After a painful year of not walking, UCLA finally diagnosed it but, by then, I needed a total hip replacement. I was very worried but, it all worked out fine. It may seem from reading the history of my journey with cancer, lymphedema, etc., that it’s been a not so happy life. But, that’s not true. I have always been most grateful that I still have my leg, that I can still walk on my own two feet and I’ll be darned if it’s going to keep me from doing what I want to do. I have a great husband, of 35 years, who is probably the main reason for that. So, I think having someone who understands you, supports you, encourages you and, is willing to listen when you’re frustrated, is a great asset. I put on my compression stocking every day, before I get out of bed. I wear it all day. I have a compression pump I use for an hour every evening. I take walks twice a day and do chair yoga 3 times a week. I used to swim 3 times a week but, stopped when I got that infection. It did help and I do plan on getting back into it. My leg does tire easily, I can’t clean my whole house in one day, anymore. And, standing in once place for more than 15 minutes is, literally, a pain. But, I guess my biggest gripe is not being able to wear shorts, skirts, leggings, etc. I could, I guess, but I won’t. My pants just don’t fit correctly, wide legs are the norm, now. But, the older you get, the more you realise almost everyone you know has something to complain about. The idea is to keep moving forward, keep putting yourself out there and try to find joy every where you can. Keep moving.
Hi Alexa! I too am happy to have found this site. I’m 56 and have secondary lymph since 2006. I had a hysterectomy which involved the removal of 50 lymph nodes. I was fortunate to not have cancer. But I wasn’t fortunate enough to have a doctor who would be conservative in his removal of nodes. Especially when I had not been diagnosed with cancer. He did tell me that I might get a “puffy” leg post op. He wasn’t kidding. By 2011, my leg blew up. My family doctor knew exactly what I had, but could offer no help other than stockings. I didn’t return to the OB/Gyn as I felt he’d done enough. I found out later that he is know as “the Butcher,” in Grand Rapids. After some searching, I found a lymphedema clinic in GR! The doctor looked at me and said that I had been, “harrisonized.” He had seen this condition before, many times, from the same doctor. I only mention this as I often share with women, to be diligent in their search for knowledge about hysterectomies. Long story short, I’ve had two surgeries since then. The surgery that was successful was a lymph node transfer performed in Chicago. I have since lost over 3000ml of volume in my leg. I still remain bound by my stocking, pumps and wraps. I have been blessed with the ability to move, stand, and squat. I was also blessed with the ability to take care of my mother. You see, as I was battling my condition, she remained my greatest fan. And then, at the age of 82, she became paralyzed as the result of a hospital’s mistake. She went in for a simply laminectomy and ended up paralyzed the next day. My life changed dramatically. I now found myself driving 3 hours to see her weekly. My pump ALWAYS in tow. And every time I would pump in front of mother, she would tell me how upset she was with the doctor. She was so concerned about me and my health, and she’s sitting in a wheelchair. Her life had been ripped away. Her home, gone. Her winters in Florida, gone. Bathing on her own, dignity, gone. There was never any room in my life to complain. Life with Mother was nothing short of love, laughter and great conversations. For four years, I would continue my trek. Often times hating the packing of pump and wraps. So inconvenient and just a pain. And always at the other end, was the smile that kept me going. Mother passed away in June of 2017. Myself, my 6 sibs and and numerous nieces and nephews surrounded her, all totallying to 52 loved ones. How grateful I was to simply be able to bend my leg and sit on her bed. That I could sit with her all night and not have my leg burn and swell as the evening would turn into day. The way in which my mother handled her situation, gave me clarity into how I see mine. And how I see others. I finally went back to a new therapist who helped me get the swelling down in my groin. Four years of driving and sitting in a nursing home took a bit of a toll. My heart aches at what my mother had to endure. The small silver lining is that my condition took me out of the workforce. I was able to be there for, and with her. There just wasn’t better person than her, to share my struggles, laughs, anger, tears and joy. She was a great mentor, confidante, mother and disability buddy! To the many of you whose stories I’ve read, I wish you all the blessings of health and comfort. This lymphie this is a bitch!
Life at face value,. Your story is so inspiring. My mom, even after having dementia, was always my biggest fan. I envy you and your ability to be with her at the end. I was suffering in and out of hospital, cellulitis, undiagnosed lymphedema in left then right leg. But I to am grateful, every. Single. Day. Even when I don’t leave the house for weeks because of cellulitis, and the horrible flu symptoms, and because I can’t do too much too many days in a row without a flare. Imagine doing all this homeless, in a tent, in the rain, with the cops telling you to get out and move. I am blessed. I can still walk, with a walker. I still have not been able to see a therapist, there are so few near me and other more pressing medical reasons. But many of my systems still work, I can see, hear, eat, defecate, urinate. And all of these make my gratefulness list on the regular. I know for a fact that my mom is looking out for me, and I’m sure your mom is too. Aren’t mom’s the best? Hey another grateful point!! Mom!
Well maybe you’ll see this, it’s been years since your post. Cheers!
I was just diagnosed yesterday and it has been a godsend to find your blog. Like you I’ve had symptoms from birth in both legs and I have gone 26 years without diagnosis or treatment. I look forward to visiting your blog over and over as I navigate this new terrain. I’m scared to death and extremely sad but glad I’m not alone
I’ve been fighting for a diagnosis for nearly a year, my feet and legs so swollen they’re almost unrecognizable. I have a huge hard swelling at the back of my left thigh and because of where I live and the condition not being taken seriously it took me a further 3 months to attend a nhs clinic ran by just two nurses. I was given knee high compression stockings but now the swelling in the back of my left thigh is so hard and it’s enormous and so hard,I’m being offered nothing else. I have quite severe arthritis and now can’t get around at all as the extra weight on my joints make it so painful. Can anyone please help with advice as to which direction I should be heading in because I seem at a loss. Good to read the posts and know I’m not alone .
I just stumbled on this blog and was very interested in reading everybody’s condition. I have been treating lymphedema in my right leg for over 35 years and I have never met one person in all my years that had it. I have gone to many doctors vascular heart doctors and nobody seems to really know much about it 20 years ago I read about this Dr. Lerner in Princeton who Ranett clinic they did bandaging but I was never able to get there because of working conditions. So I have been using compression garments for the last 30 years trying every which one. I also have a pump that I use periodically. But I never really had anybody give me a lot of advice until recently. This summer my leg with this heat swelled a lot and I took my pump Out of a closet that had been sitting there for about for five years. I started using the pump and I Saul results than I thought with the Internet let me search and see if there is any thing that has progressed with lymphedema I found a physical therapist That specialize in lymphedema I was really very concerned watched your video is it saying that she’s dead wrapping for two weeks now I’ve been wrapping with bandages she’s getting ready to measure me for a custom garment. I have never had a custom garment I’ve only bought over the counter I didn’t realize there was such a thing I was wondering if anybody has had custom garments and do they work better than the ones we buy through Jobes or met Medi. I’ve never had to the massage drainage or the wrappings bandages I’m learning to do them myself I’m trying to find what is the best routine the garments the wrappings the Velcro anybody have any ideas on this. It’s just so good to see so much information on the Internet on lymphedema I didn’t realize there were so many people that suffer with this and there’s not enough research or doctors that really handle this
I have always used custom compression stockings…they are expensive, about $300+, now. I usualy get 2 at a time so I can alternate. They’re suppose to be used for 6 months but, I have used mine for sometimes, up to 2 years. They are measured just for you, are a heavier weight and give more compression. I put mine on every morning before I get out of bed. I also elevate my leg every night while I sleep and, periodically throughout the day. Every evening, I use a compression pump for an hour or more. I used to wrap but, after measuring everyday for a week, I saw no discernible difference from what I was doing. However, on occasion when my leg has been more swollen then usual, wrapping will reduce it in size more rapidly. I realize I’m a little late in my response but maybe, it will help someone.
Hi Alexa: I’m not sure I’m in the right place because it only happened once and without a family doctor, walk-in clinics only want to deal with simple problems happening now. Basically, I know I have an allergy to cats and dogs but had been “toughing it out” for love of my pets, until one day I reached for the litter box and boom! Before my hands actually touched it, in mid-air, every pore on the backs of both hands, stood up like little tiny mountains, hundreds of them, and they all began to “shoot” volcano-like clear fluid straight up from their little peaks. Literally an eruption and something I never imagined in my wildest dreams. Scared me silly, but later, my hands turned to almost raw meat and the skin would not heal and I had to bandage both hands and wear plastic hand bags in the shower for two solid weeks before there was any sign of healing. Never got a diagnosis, doctors didn’t seem interested in how it happened, only in treating the raw skin/meat. Trying to fnd out, I stumbled on this term Lymphorrhea and your site and heard that lymph fluid is caustic and wondered if this violent discharge could be the sort of thing they are talking about, although most people seem to describe it as a “leak”? And if it was caused by an allergic reaction? is it still the same thing, this Lymphorrhea? Obviously, I now stay away from cats, and dogs and horses and cows but wonder if this will ever lead to the “leaking” thing most people here seem to talk about.
Hi Alexa, I have secondary lympedema from cancer treatments. It is in my left leg. Today in the stretching end of a water aerobics class I had an unusual experience. I was standing and felt tickling up my swollen leg. When I looked down I had little air bubbles coming out of my lower leg and as they kind of crawled up they were the tickling sensation. Lasted for a few minutes. Have you ever heard of anything like this? After having lymph edema for 25 years this is a new one for me. Thanks, Anita
Having lymphe edema for almost 30 years, I search out information and treatment hints all the time. I appreciate all the work you have done here and I LOVE IT! Will be checking back regularly. Thanks Alexa! Kim
I’m new to Lymphedema since having Lymph nodes removed during an exploratory surgery on my abdomen last fall . I seem to have it mostly in my torso but the pain is head to toe when I have a flare up . I’m on homeopathic remedies , diet, yoga walking and water aerobics and swimming 🏊 manning to start rebounding too. . Right now I’m
Having the worst attack I’ve ever had , I’m in pain can’t sleep and have gain 5 !pounds in a few hours . Ouch !
GOOD STUFF !!! This site is a miracle !!! And here “old Johnee8toes” thought he was the only one leaking something that at 1st looked like urine but without the smell, right out of both lower legs. (Very much from the wrong place.) I went to the “saw bones,” He gave me that look… you dumb hillbilly and educated me as to my new life as a lymphy. Thanks to all of you for sharing. And now I know the rest of the story.
J8T
Hi Alexa
Glad I found this blog. I have had lymphedema for years. It’s not getting any better. My legs hurt, feel warm and tight more times than I care to talk about. People think you are slow and over weight all the time. It feels like they would rather not be around you because you would cramp their style. Although I have gain a lot of weight by being inactive now. My primary care doctors keep asking me are you taking your fluid pills. I have a lymph doctor all he talks about is my compression socks not being tight enough and rushes out of the room. My lymp clinic seems like they have no idea of anything new. Are you pumping is another comment I here from them. Seem like all of my dreams are going down hill.
This problem is just one of my medical problems that I have. I feel if I could get this one worked out some of the others wouldn’t be so hard. Sorry to vent but I’m glad there is someone that understand the problem and the tears.
Thanks Phyllis
Phyllis, look into seeing a vascular doctor at a local medical university, they often are more up to date on treatment. Also, please look into your “fluid pills” These days it’s pretty common knowledge that diuretics are not helpful for lymphedema, although I Am NOT a Doctor!!! Diuretics dehydrate the lymph fluid, because they remove water, not lymph. So they make the remaining lymph sticky and immobile. I wish you luck with your illness, I too have it in both legs and groin from a poisonous spider bite.
dont eat powdered oils hidden in pastries everyone. eat fresh no avo no salmoln or lamb or nuts limit or avoid
No salmon, lamb or nuts?
I have just found this site after over 40 years of living with primary lympedema in both legs. It showed itself around 8 years of age when my knees started to lose their shape and other kids used to comment on them. My parents had no idea there was anything wrong and I subsequently embarked on a long period of standing for shop and bar work until I was around 25 years old. This took what was a mild case to a serious case of swelling and tightness in my legs. In my twenties I finally managed to get some help from my GP but it was only in the form of compression stockings. As primary lymphedema affects 1 in 100,000 people no one really knew what to do about it. I was offered liposuction at one stage which would have made it worse. Later in life the condition worsened when I became pregnant with my two children, I would have liked to have had more children but each pregnancy resulted in a heavy risk of thrombosis and brief hospitalization for monitoring whilst pregnant. I also had difficulty wearing shoes. I am now 51 and still don’t show my legs in public. I have worn trousers for most of my life. I do have a compression machine with sleeves for both legs which is wonderful, it feels great on the legs and reduces the swelling a lot…I would recommend to anyone who does not have one. I was extremely worried that my children would inherit the condition but both are post puberty and not affected currently. We learn to live with what we have and the important thing is we are lucky to have friends, family and marriage partners that see past the condition and only see the person we are.
Hi everyone, just found this site after noticing clear fluid coming from what just looked like a open pore in my lower left leg. I phoned doctor for some advice and receptionist said sorry there’s nobody available to talk to you but call back tomorrow morning. I started to look on internet and came across this site. I’m 82 and all my earlier life I had straight legs with no shape to ankles, but it didn’t stop me getting out and about, dancing, roller skating etc. When I was 47 I had a hysterectomy and all of a sudden my legs were getting larger although my weight was ok. Every doctor I’d ever seen for various reasons hadn’t a clue what caused it. Eventually when I was 60ish I was at doctors and a young doctor who was covering at practice saw me for something that I can’t even remember, and as usual I came out with my piece about had he any idea what it was and he said straight away I’ll make you an appointment for you at the hospice who also deals with cancer patients who had primary lymphodema. The nurse I saw there said to me you have 2 conditions, 1st is lipodema which is inherited, thus the shapeless legs, and 2nd is lymphodema which woul have happened when you had hysterectomy when your hormones are over place. I got measured for compression stockings and went back every 6 months to get measured to check on them. My legs more or less didn’t get bigger and the head nurse who for some reason was always abrupt with me said I’m signing you off. I said why ? coming here keeps me motivated. She said well unfortunately there are people here who are worse off than you. I couldn’t argue with that. For the next few years I was naughty and didn’t always wear the stockings, but my legs were ok. Then I retired at 76 and was less active and my weight started to creep up and I noticed my legs seemed to be getting bigger.
My sister and I lived together for many years and she was diagnosed a few years ago with COPD. She died in August last year and I didn’t grieve properly, didn’t even cry. between that and the lockdown I turned to food for comfort and I put on 3 stone (52 pounds) All of a sudden I noticed my legs were like balloons, Only from ankle up because with lipodeama the feet don’t swell but leaves you with almost like a cuff at the ankle. Anyway with the leakage I panicked and look up internet for some help and I’m glad I did and found so many people with same problems. I’ll still phone doctor in morning but thank you for this site.
Hi Catherine,
I also have lymphodema , following a vicious moquito attack in the Cook Islands, almost 12 years ago. I went from having beautiful slim legs to having the lyph glands destroyed in my groin, left with permnent lymphodema. Not only did my life change drastically, I went through many other losses, including a marriage, the death of my brother and my daughter moving to Scotland with her husband, then I had a pulmonry embolism, other health issues and like you, never properly grieving, and with not only my mobility severely affected and my hosiery costing me eighthundred NZ dollars a pair, I began putting on weight, feeling very depressed about this for I was always slim.
I recentlyexperienced leaking in my lower right leg and now, an ultra sound has showed leaking veins. Have you lso now got leaking veins? .
Thank u alexa for writing such a nice vlog.It helped me.
Hey Alexa…glad to find your page,i have had lymphedema since i was 8 in 2010!😊
Thank goodness for you and your wonderful blog! I don’t feel so alone and scared. I’m in middle of trying to get formal diagnosis. I had no idea something was wrong until I woke up with nerve pain, itching, numbness and swelling that in matter of days felt like it’s spreading from left leg and left arm to other side of my body. I can barely sit in chair for more than hour. I believe it’s lymphedema as symptoms all add up. ER did not find anything vitally wrong when it first started, so I’m on a mission to get diagnosed now! Wish me luck.
Hello, My name is Michelle. I was diagnosed with breast cancer in Nov 2020. We started doc appt immediately. I had surgery 1.20.22 at that point the dye they placed directly into my nipple didn’t adequately light up the affected lymph nodes. They took the ones who kinda lit up. 2 weeks later we did a PET scan it showed my lymph nodes were really pissed off. So they went in again and took more lymph nodes for a total of 15 8 of which were cancerous. Then I started chemo, they went with a concoction of 3 different medications which they call Red Devil they told me all this stuff was likely to happen, weight loss, vomiting, nausea, fatigue, an inability to eat. They set me up well with medications to fight nausea and vomiting. By some miracle I had such a small amount of side effects they aren’t worth mentioning. After my last treatment I started with issues breathing, went to ER they kept me. After 3 days in hospital they finally figured out that I had multiple blood clots in both lungs. I stayed a total of 5 days. Then I believe we waited like a month and started the next chemo series was supposed to be less side effects than 1st series it kicked my butt. I mowed through food in the 1st series, the second series I still didn’t have an issue with appetite. Then radiation started half way through I got covid had to wait. Needless to say chemo and radiation took up my entire 2021. I had a colonoscopy 4-5 months before this diagnosis and found out I had pre cancerous polyps. At 20 yrs. old I found out I had severe endometriosis. I had multiple surgeries for that treatment/maintenance of that terrible disease since I was 20 until today I’ve had 13 surgeries, I’m 57 soon to be 58 in January. I started reading your article because when I need answers to my questions I occasionally research on the internet. I have never had a tattoo except the 3 dots for the radiation. I know I can’t have anything like blood pressure, IVs, etc on this arm. So I was curious what you were gonna say. I was thinking instead of wearing these dang silicone bracelets….warning of lymphedema and blood thinners. What if I had tattoos that looked like the real bracelets. No worries it’s not gonna happen.
Thank you for your research and publication of your findings.
Merry Christmas and Happy New Year to everyone