Has anyone been diagnosed early, and kept their swelling under control for many years or decades, and avoided cellulitis? Has anyone seen an improvement or resolution of the condition after the first year or two - e.g. lymph channels naturally rerouting around a problem area? My lymphoedema is from lymph node removal for melanoma testing.
I was diagnosed with secondary lymphedema in my right leg about 13 months ago after cancer treatment. The swelling has been getting worse despite daily compression, manual lymphatic drainage massage and keeping my legs elevated as much as possible. By the end of most days my leg feels heavy, tight and painful and I’m starting to get some skin changes which really worries me. A few weeks ago I decided to try adding lymphatic drainage supplements to my routine after reading quite a bit about them. I’m only on week three but I’m already noticing some small positive changes the extreme heaviness in the morning has eased a little and the skin feels slightly less tight.Has anyone here had success with lymphatic drainage supplements and did you combine them with other things like dry brushing,exercises or diet changes for better results?
I'm curious if or how those who use the pump at home travel? Assume you use compression wear.
Do you take the pump with you? If so, how do you pack it so it's not a huge cumbersome item to carry/transport?
Do you take it if driving but not if flying? How do you manage the swelling?
As many of us have battled wrong information, even from CLTs, I learned that if you are prescribed thigh high compression, you also need graduated compression shorts otherwise the fluid is just being pushed into the upper thigh, genital and pelvic region.
So many of us are not prescribed graduated compression shorts and/or are not educated about the lack of shorts potentially causing genital or pelvic swelling/lymphedema. Graduated Compress shorts, not shape wear shorts, are tighter in the thigh to bring the fluid up.
It is possible the shorts won’t fully get the fluid out of the upper thighs, genitals, pelvis, but it is something to consider given we have so little information. , even from CLTs.
I have primary lymphedema in both of my legs and feet. I was diagnosed in my mid twenties about 20 years ago. I also have a weak right ankle from an injury I had when I was a teen and my right ankle tends to roll while wearing shoes causing me to tend to walk on the side of my foot. It's gotten to a point where I can't leave my house anymore because my shoes will no longer support my ankle enough. Are there any ankle braces made for people like me with huge swollen legs? It can't be big and it has to be confined to the foot below my cankles.
Edit: I didn't create this post for advice on my legs. I've been dealing with this for twenty years. I have heard it all. Please keep this to the ankle brace.
I just wanted to know if all the Instagram hype is real about the vibration plate. Does it actually help in lymphatic drainage? What can I expect from it and the best brand in India to get vibration place from?
I am a primary patient. When I started MLD of my legs, slight pelvic swelling appeared. I was overall dismissed by my CLT and PCP. An internal/external pelvic ultrasound was ordered and it was “normal”.
I was then prescribed a pump, with the newest technology, that also covered the pelvic region. Which is supposed to “clear” the area before pumping the legs. My CLT never showed me how to do MLD on myself, instead they gave me low impact exercises to do prior to pumping.
About a month after starting the pump I ended up with internal & external genital lymphedema which has not subsided after months of pelvic floor/PT/CLT therapy. I also have pelvic lymphedema now.
I am not implying that all pumps can cause genital lymphedema, but do know there is a risk and I assume it is higher for primary patients. The risk was not told to me by my CLT or the pump company so please be extra cautious eventhough the “technology” of the pumps has changed, I assume the risk has not.
Please view the link. Yes, the study is old, but there is a risk and I am now living with that risk as it was not disclosed to me with the newest, most modern pump.
https://pubmed.ncbi.nlm.nih.gov/9561507/
EDIT: I won’t disclose what pump I was prescribed. But it does provide pelvic coverage with the legs and it has the “newest” technology. Per the article linked and another article I cannot find again, which was published in the 2000s, it does not matter what type of pump, or how long it is used for in order to put you at risk for genital symptoms. Again, this is a FYI/PSA post.
ADDITIONALLY: if you are prescribed thigh high compression, you also need compression shorts otherwise the fluid is just being pushed into the genital and pelvic region. So many of us are not prescribed shorts and/or are not educated about the lack of shorts potentially causing genital or pelvic lymphedema.
LASTLY: The pump companies are just another version of Big Pharma. They will likely never disclose the risk.
Hello,
I am trying to determine if I have lymphedema or lipedema. My dr (an np) didn't want to give me a referral, but offered a venous ultrasound-- like a compromise, I guess?
So my question is, what information will I actually get from this? Can the test be... 'negative'... And I still have lymphedema or lipedema? Can this diagnose at all, or is this just a waste of my time to encourage me to drop the subject?
Thanks for any input 🙂
I’m a 27 year old female with persistent bilateral pitting edema in my lower legs that has been present for years. My bmi is 23 and I workout regularly. Recently, I’ve developed progressive discoloration around my ankles/lower legs, and I occasionally have discomfort, especially when running. It feels like all the blood is pooling to my calves. When I went to a dr about this, they heavily focused on the staining and sent my pics to a dermatologist. I requested a comprehensive venous workup. A Doppler ultrasound ruled out blood clots, venous insufficiency (reflux), and significant varicose veins. Routine blood work has not identified an obvious cause. Dermatology felt the skin changes were consistent with pigmented purpuric dermatosis (Schamberg’s disease), but that diagnosis does not explain the persistent pitting edema. I’m looking for insight into what could be causing the chronic edema and what additional evaluation or treatment might be appropriate. I am so grateful for any information, I don’t know where to go from here.
—not on any medication—
Anyone ever hear of this?
It’s a 15 lb vibrating “plate” that’s supposed to treat lymphedema.
Hi, I'm a 26-year-old woman, 175 cm tall and around 90 kg.
I'm usually very sedentary and don't exercise much, I'm a programmer. About a week ago, I decided to work out for the first time in a long time. I felt completely fine during the workout, but the following day I started noticing symptoms.
First, my right leg became very itchy, and I found a lump about 3–4 cm in size. It was hard, red, slightly warm to the touch, and somewhat painful. Since then, I also feel like my right leg has become slightly larger than my left, although I'm not sure. I don't think there was any noticeable difference before this happened.
Over the next few days, the symptoms gradually got worse. I started feeling pain throughout my entire right leg, from my hip down to my ankle. I also noticed a yellow bruise near my knee. My leg feels unusually heavy, almost as if it weighs a couple of kilograms more than the other one, and it sometimes feels swollen. At first, I went to a doctor who thought it might be an insect bite. He prescribed a topical corticosteroid cream to help reduce the lump, but although the redness improved, the lump didn't disappear and my symptoms gradually got worse over the following days.
Then I went to another doctor, who performed a Doppler ultrasound. He said there was no evidence of a blood clot (deep vein thrombosis). He thinks I have venous insufficiency and prescribed diosmin.
However, I'm still worried because the lump it's not as big as before and it's not red, but it continues to hurt, feels heavy, and the lump hasn't gone away after a week. I'm not sure whether these symptoms can all be explained by venous insufficiency or if I should be looking into other possible causes. I have the Doppler ultrasound if it's necessary.
The leg is also very tender to the touch. Some areas are extremely painful when pressed, especially the back of my calf.
I take: nexium, sibilla (a combined oral contraceptive pill), 2mg lorazepam, 25mg fluoxetine, folic acid and Almax (almagate). I don't drink alcohol nor I smoke. For context, this was my first workout after being sedentary for a long time. I did:
Hello!
So I was recently diagnosed with bilateral primary lymphedema after months of chasing problems involving pain in my legs/feet/ankles. There are multiple causes at play here, but the lymphedema is the one I'm trying to get ahead of now before it becomes a bigger issue (previous damage from bad falls and over-tight tendons are already being adressed).
I've tried a search in this sub for what people recommend for decent, not-break-the-bank compression socks but I'll admit it's become a bit overwhelming. So I'll ask here: what are your current recommendations for decently priced compression socks, preferably ones that can be machine washed because time and pain while standing at the sink is still a problem currently. I work a physical stocking job and I can tell when the swelling gets to be a problem. It's actually limiting how many days I work for the moment.
It will probably be asked: I do have an appointment for a lymphedema therapist next month set up a month ago, but I need to make it until then.
Thank you in advance.
I was diagnosed about a year and a half ago. I wear my socks 30mmgh everyday and 2-3 times a week I use tactile medical compression pump. I’m short and squat so so have been having trouble finding socks that fit comfortably and I’ve noticed this pooling in my ankles recently. It’s very uncomfortable as it digs into the skin and creates some irritation. Is this just normal swelling or is it a fit/sizing issue?
I was born with lymphedema my legs have been swelling as long as I can remember. I heard about supplements and got really excited but after further research it seems to be something thar has more effect on secondary lymphedema not primary. Has anyone with primary tried it and had any positive experiences?
Hi folks,
My mum has lymphoedema in her right leg as a result of having her lymph nodes removed for cancer treatment. It’s currently super warm in the UK at the moment with night time temperatures up around 20°C (which is warm for us). Her leg has swollen up massively and she has it elevated but after a night like this it doesn’t seem to be going down any.
She’s kinda playing it down but I’m actually quite worried about her and think she should maybe contact an out of hours GP.
I’d love to hear from you if this is a standard thing you deal with or if there’s any genuine concerns I should have and if she needs to be checked out.
Thanks in advance.
A worried son.
Okay this is my realisation, after living like this for years, even when 6 half stone,...
Years on.. I'm now 52, female, size 18/20
that all my life I have suffered with lipidemia.
I just assumed it was cellulite and even though I have lost weight various times, it just doesn't go and I can see the horrible lumps on my heavy thighs and it distresses me and although I can get compression socks..
I noticed that there is not really anything for thighs,
is there anything in the UK,
that I can use that is reliable, for heavy thighs? And bottom...
thank you for all the information
Has anyone had any personal experiences with vibration plates? I am curious and considering trying one.
Due to budgetary restraints I have not yet pursued my lymph/lip edema diagnosis although I will be doing so in the next few months. I have come to strongly suspect lymphedema due to enlargement and swelling in both legs - which up until recently has been medically dismissed as mere obesity. However I have always had intermittent issues with swelling such as when I had a neck surgery and developed facial/neck edema. After quite a lot of research I've come to suspect bilateral lower limb lipedema or lymphedema. My triceps area is also affected.
Has anyone had positive or negative experience with using a vibration plate for their edema? I also am curious to try one for treating long term back and hip pain.
Getting compression leg pumps that go up to upper thigh - most of my swelling is in the hips though - should these still help or do they need to cover the hips?
Anyone have experience with hip swelling finding success with just leg pumps?
Hi all! I have primary lymphedema for some time now and i know all the big things for managing it like compression, MLD/CDT/PT, leg elevation, ect. I haven’t yet tried a vibration plate or pumps, but i was wondering if anyone had any simple things to implement into my daily life to help manage swelling and pain. For example changes in eating habits or supplements or topical treatments! Thanks!
Hello! I’ve always had issues wrapping my right leg because of the shape of the swelling. There’s a spot where for whatever reason there isn’t much swelling, and then way more swelling than other places right above it. I used to have issues with the bandages sliding down because of the shape of that spot and getting bunched below it where there isn’t swelling. I stopped even trying for a long time and decided to try again today. The wraps are staying put, but there’s pain in that spot now. Any advice what I’m doing wrong or what I could do differently?