r/Lymphedema

Hi Everyone,

I am totally new to this community so I am sorry if I don't know the right words to say what I want to say. I am 19 years old and about to go back to university but my mom recently got diagnosed with Lymphedema. One of her legs is noticeably larger than the other and she's been in a lot of pain. She was also diagnosed with arthritis recently as well.

She has been waiting for a physical therapist but she is on a few waitlists. I am getting very concerned because she has been very upset. I've found her crying a lot recently and I feel so bad and I don't know how to help. She's been to the ER several times. She is in a lot of pain. She hasn't been getting much sleep also. She still goes to work every day and comes home and cooks dinner and stuff but I can see she's feeling horrible. Also she's recently had terrible pins and needles in her leg which is causing her to panic and sleep even less.

I don't know what advice I can give her or what we can try. I know she bought compression socks online and she wears them from morning to before bed. Sometimes she massages the area herself. Sometimes she ices it. I think she's been taking NSAIDs which I read might be making it worse but any input would be appreciated. Anything you guys think I can have her try or any advice on getting on this quickly is so appreciated from you.

Sorry again if I am not vocalizing this the correct way, I am just trying to help out my mom. Wishing everyone the best :)

With insurance I'm looking at paying $2000.00 for a pump with leg and torso. Anyone bought pumps online for less? Brand rec? Advise? Yes I'm in the US.

For all my friends that are on Medicare, Lymphedema Products LLC (lymphedemaproducts.com) is now accepting Medicare! They often have open box products that are sometimes 50% off that they will notify you by email of.

Just an FYI! 😊🦋

A few days ago the scientific article on Phase 2 was published, confirming that "Selective leukotriene B4 antagonism is associated with improvement in overall objective and subjective measures of lymphedema. This study provides the first evidence in support of acebilustat as a novel oral therapeutic for chronic lymphedema".

No news on Phase 3 but I guess that's gonna take a bit longer. Hopefully Dr Rockson, now that the article was published, will discuss soon the results on the LEARN YouTube channel.

Hi All-

I've been very lucky so far, but I need some advice, please. 11 years ago, I developed hand/arm lymphedema 10 months after cancer treatment. I was already in PT for something else, so I was treated early and aggressively; I literally started treatment the day after the lymphedema flared. However, my problem area is/has always been the webbing between my fingers. It doesn't seem like even a Flexi gets that spot well.

I'm thinking that I need to change garments. I had tried a lot of brands early on, but settled on Lymphedivas, because I wanted something that looked non-medical. I used them for years, but the last time I saw my current OT, she told me to switch to Juzo, because it's stronger. But it doesn't feel like or look like they are strong enough in the webbing, either. I've tried taping and then putting on a glove, but it gets annoying because the glove pulls the tape up. Does anybody have a favorite brand of gloves that does well with fingers/webbing? I know I need something different, but I don't want to spend money blindly. Thanks for reading this far!

Pour expliquer expliquer simplement, j'ai un lymphoedeme primaire (démarré en même temps que ma puberté précoce à 9 ans, j'en ai 32 actuellement) et peut-être du lipoedeme. J'ai aussi 4 maladies rares et génétiques depuis mes 2 mois, et des maladies chroniques qui se sont ajoutées au fur et à mesure des années.

J'ai essayé toutes sortes de bas de contention/ compression mais je ne supporte aucune matière (hypersensibilité au niveau de la peau)

J'en ai partout, dans tout le corps, mais la ou ça m'embête le plus c'est au niveau des pieds (orteils et dessus du pied compris), cheville et mollets (pour les bottes)

J'ai vu que j'avais un trou qui se formait au niveau de la semelle extérieure de mes baskets, je dois en changer rapidement, c'est ma seule paire

Quelles marques de basket me conseiller vous ? Qui soient assez larges avec une semelle épaisse ? Pareille pour les bottines (je voudrais bien essayer les Doc Martens, ce qui m'embête c'est les ampoules 😖)

Merci d'avance pour vos réponses et conseils

2 months ago I had a flexsig. after I noticed my right leg was feeling stiff. a couple days later it was huge! Had 2 unltrasounds to rule out a blood clot. Then I was sent to a knee doctor, 2 x rays and then a MRI. She said, mild arthritis, do PT. So my leg kept swelling. I went to another knee doctor. He also said mild arthritis, it's normal at your age. I do have a backer cyst but it's smal. finally I went to a vein doc. He never really looked at me, just ran some tests. They said the right leg the blood flow was a little slower. They want to do a venogram. I don't trust this guy, he is fresh out of school and went in to carrabian where you do college from the beach. ok. no other vascukar docs. I had people searching for me. I am in Colorado. Anyway, why has nobody thought this might be lymphadema? TL;DR thoughts??

I am waiting to get into a lymphedema PT. In the meantime, I'm wearing tubiflex compression where you cut the length from a huge roll yourself. You have to double it to get proper compression. It's so hard to get on! Q: Does anyone have experience wearing this? How do you deal with the top rolling and tourniquetting the leg below the knee? It's horrible!

EDIT: To be clear, I did not say anything. (This was at the bottom of my post.)

I saw a woman in her 20s wearing shorts who looked as if she had both lipoedema and lymphoedema - seeming cuffing at the ankles( and (for want of better words), lumpy thighs, small-ish upper body (you wouldn't call her fat) suggesting lipoedema, and disproportionately thick, heavy looking lower legs - that would stand out as unusual to anyone - suggesting lymphoedema.

We're in the most extereme heatwave in our history.  We were both waiting for the bus and actually ended up getting the same one.

Considering how under-diagnosed these conditions are and the importance of really intervention (which I didn't get despite doing too my GP immediately), I felt a responsibility to let her know if she didn't already. There's a chance she knows but just decided not to wear any compression or whatever.

I wanted to ask if she'd heard of either condition to potentially help. But I also didn't want to make her feel self-conscious or anything.

Anyway, I didn't say anything. Would you have done?

Hi! First of all, thank you for having this subreddit. Im (53, F) tearing up while writing this because I have felt so alone and so hopeless for the past 10 years or more. I can't wait until I have some time to read through all of the posts! I was diagnosed with lymphedema on the left side of my body and lipedema all over about four years ago. I was given some exercises to massage and I already had a pump that I bought off of Amazon. I brought it into PT and she showed me how to use it. All of my many medical professionals basically told me to lose weight. Ok, got it. (easier said that done). Anyway, I started a GLP-1 in January and I'm down 75 pounds so far. I have another 75 before I can have any kind of skin surgery. (245 cw)

But guys.... I still can't look in a mirror. I still can't wear jeans that fit. My left leg is almost 2" in diameter larger than my right. My calves (both) and giant sausage rolls. I know I shouldn't speak badly about myself but... Im stared at in public. Its so embarrassing. I can't wear long dresses because dresses don't cover the "cankles". I can't wear jeans because they are so tight at the calves and quads and super loose at the waist. I have nothing to wear and I have to go onsite to a customer on 08/24-25. Im in a panic. I haven't been onsite with a customer in YEARS. Heck, I avoid outside because Im embarrassed. I know a lot of it is BD but I really don't know what to wear. You should see the disappointment when people meet me. Now, that I have seen all my life. I sound super cute and young on the phone and guys flirt with me all the time. I try to keep it professional but they always push the boundaries. Then imagine when I come rolling in onsite. Then they do the up-down and get to my legs then they just stare. And I'm not overthinking it. I was in line iwth my son at his graduation. I wore super baggy flowy yoga pants with a long sweater. But you could still see the fat pockets at my knees and my legs rubs together even at the knees when I walk. Anyway, this lady ahead of us turned around, did the up-down and stopped at the knees. She kept turning around and staring at my knees. I was dying inside. I was looking at her waiting for... something? I don't know. Anyway, I finally asked if I could help her with something. She jumped and looked up at me, mumbled something and turned back around. UGH. Even if it wasn't about the fat or if she was lost in a memory, it still wouldn't have happened if she couldn't see them.

Ok, enough. Sorry about that. I guess my question is what do women wear when they need to be business casual and they need to go to a Machine Shop and they have huge legs. Sorry for the novel but Im sad, alone, can't enjoy the weight loss because I'm still having issues with my legs, and Im hopeless. Any advice?

I was just diagnosed with lymphedema and had my first manual lymphatic drainage. Afterwards, my PT wrapped both my legs up to my knees with bandages. It doesn't hurt but it is absolutely driving me insane. How can people possibly leave these on for 24+ hours? I am so agitated by it and it's only been about 10 hours. I have to go twice a week for six weeks, so I'm nervous that I am going to uncomfortable and agitated for foreseeable future.

Does this get easier to deal with? Do you get used to it? Can someone reassure me that it will all be worth it in the end :( Also, does anyone have any tips for bathing without getting the bandages wet?

EDIT: this should say "bandages" not wrapping. Im so new to all of this that im not even getting the terms right!

I would like to ask if anyone has undergone immediate lymphatic reconstruction surgery? Could you share your experience? I've heard of a procedure called LYMPHA, and also another one called ARM. Are those standard procedure recommended by default? Would these be suitable for patient with cT2 ? Thanks so much.

I have bilateral lower leg lymphedema since about 6 years ago and possibly due to a spinal cord injury (compression) 14 years ago which limits me to using a wheelchair or walker today to get around.

I’ve had 4 bouts with sepsis in 5 years with 2 of those bouts just 2 months recently. The first of those 2 was no big deal- I knew the signs (dizziness and very warm lower leg on 1 side only) and started treatment with 3 x 300mg Clindamycin per day for 7 days. I already had the antibiotics on hand from a “just in case” scrip from my Dr..

I should have but didn’t refill that scrip because I was going to wait until my next Dr’s appt. in 3 months to do so. But a 2 months I had sepsis again and had to go to the ER it hit so fast.

My questions are;

1- Do any of you who’ve had repeat sepsis keep a “just in case” scrip of antibiotics on hand? I know there are different antibiotics used for different bacteria. I believe my taking antibiotics so early not only kept me out of the ER for a week but also prevented the serious lower leg wound I developed 2 months later when sepsis hit me again.

2- Do any of your doctors prescribe a prophylactic dose of preventative antibiotic for periods of time or even for life?I’ve been on 1 x 300mg Clindamycin per day as a prophylactic ever since my ER stay and leg wound 2 months ago. My regular Dr. prescribed this despite the C-Diff dangers with Clindamycin ( I take daily probiotics) to bridge the gap to my first Infectious Disease Specialist appointment which will finally be later this week.

My regular Dr. said if the particular bacteria were known , likely either staph or strep, I could take a prophylactic dose of a safer antibiotic.

I’m 74 and all for life long antibiotics to prevent the delirium, fever and leaking leg wound caused by my latest bout with sepsis. I have this feeling though that an Infectious Disease Dr. won’t go for that, not that it could cause me problems but the fear the medical industry has about creating antibiotic resistant “super bugs”. If those Dr.s went through what I did this last time I bet they’d have no problem prescribing prophylactic antibiotics for themselves.

Anyway, just trying to get a feel for preventative antibiotics. thanks in advance for any info.

Hi, I have had lymphedema since i was 8 years old.

I am now heading into my 30s and have been looking into products for people who deal with this condition. I'd like to do some market research outside of myself to know ... what products do you like? which ones work and which dont? what products do you feel you are missing in your routine and what products work but need alot of improvement.

So any input is much appreciated - I would love to hear about what has and hasnt worked for everyone!

I’ve had veinous insufficiency going on since I was a kid. I had one vein popping out since it was 15 and had surgery for it when I was 20-21. It wasn’t a minor thing that made me as a young woman a little insecure. It legit had popped and was about the size of half a pinky finger.

The doctor I went to did a scan (forgot the name of it) and pressed my calves and was stunned to see how bad they where. I was then 22 yrs, 5’7 and about 120 lbs mind you. I asked him why did I have this since I was: thin, young, non drinker or any drugs and fairly athletic. His answer was genes. My great grandma, grandma and mom have all had bad veins and I’m talking the big several ones.

I’ve wear regular compression socks daily. And currently at 35 have loads of spiderveins that I plan on removing this autumn.

My problem however are my cankles. I don’t have the courage to post on Reddit but my cankles are fairly large for my frame, Im 141 lbs today. I’ve seen way bigger women with smaller ankles than me. I’ve had exes comment on them negatively and a masseur saying they look swollen. Is it worth doing lipo? Because from what I can see other than loosing weight there is no other treatment. Only symptom management. Compression socks. Lower salt intake. Loose weight. Do vibrations plates work? I don’t think I’ve got lymphedema.

I’ve noticed that my legs feel much more uncomfortable when they’re hot, especially around my knees and calves. Cooling them gives me noticeable relief, so I’ve become curious about whether other people with lipedema experience the same thing.

Does heat or humidity affect you? And if it does, what do you currently do to cool your legs or make them feel better?

I bought my first pair of graduated compression stockings and noticed a difference in my energy level from wearing them 4-6 hours for two days in a row, but I noticed no difference in swelling in my legs. I’m wondering how long it takes for swelling to go down. I had assumed it was hours, but I’m hoping I just assumed wrong. I bought 20-30mmHG stockings and think I may need to go down in compression due to pain in my veins and lots of little spasms throughout my legs from wearing them a few hours (I had wanted to wear them all day both days but has to take them off early both days due to the vein pain). Just wondered what other people’s experience is with improvements in swelling (and if anyone experiences vein pain as well). Thanks!