so what of these things are down to the lymphodema? - LSN


5,052 members2,330 posts

so what of these things are down to the lymphodema?

Emma1966 profile image

I have primary lymphodema. started in right foot after I had terrible sunburn and blisters, but went away most of the time. both legs swelled when I was pregnant at 34 but then went down again after I gave birth. 2 years later I put on a huge amount of weight. At 40 the legs really went, when I was pregnant again, and have stayed up since then. I have constant sinusitis and last two years I have developed HS. Weight gain is rapid - loss is horrifically slow. Any time I do something to my diet/lifestyle by body seems to go into 'shock' and put on weight rapidly (ie I stopped smoking, all my digestive system ground to a halt and menstrual cycle stopped for 9 months, and put on 3 stone in 12 weeks) is this just my body being tricky, or could it be lymphodema. I get acid reflux badly too

14 Replies

Dear Emma,I really don't want to be the bearer of bad news ,but i too have Lymphodema on both legs and it too started at my feet and i gradually ended up with two very swollen legs .I noticed many changes to my body ,weight increased and i found that i was eating more rubbish and smoking which i gave up 3 months ago.Since i gave up the cigarettes my weight ballooned and i gained another three stone.I have tried eating healthy ,cutting down on food ,and nothing seems to work.The reason for this is simple i eat things thats healthy but i eat too much of them ,for instance ,an apple is good for you but in my case its a bag of six and bananas and oranges then thats no good for you.i snack ,which is bad ,and i don't exercise which is worse.,and yet i blame everything ,the Lympheodema ,the loss of tobacco,my wife buying the wrong foods ,when it's nobody's fault but my own ,i just wont admit to myself that i eat too much and bring it on myself ,you are like me ,you eat without realizing you are eating the wrong food ,which is making you gain weight .There is one good way of losing it ,try calorie counting ,2000 calories a day your allowed ,eat less than 2000 you will lose weight eat more than 2000 you gain are like me Emma we got to admit to ourselves we are fat because we eat to much ,simple.

ahh, but I WAS watching my weight. I was even going to weight watchers earlier this year (as had easily and successfully lost 3 stone prior to the stopping smoking, when my body had finally naturally returned to a regualr cycle regarding hormones/digestion after the first massive weight gain which took about 8 years to settle), eating healthily, weighing and writing everything down, I went from November through until May and lost a total of 1/2 a lb..... Both times when I rapidly put on weight was after I made a major lifestyle change. The first was after separation from a highly abusive partner (so the fear/adrenalin was removed from my life, and anti depressants gone) second time was when I gave up smoking, and as I say, even my menstrual cycle stopped for 9 months. My eating patterns didnt change at all, it was just what my body did with it that drastically altered.

the first time I went to weight watchers the weight went down easily, and I lost 3 stone in 7 months. That was in 2011. I had had the first weight gain of 3 stone in 3 months in 2003. I stopped smoking in March 2012 and I was just under 10 stone. By June I was 12 and a half and the weight plateaued. I tried things which usually had worked in the past but nothing did, so I retuirned to WW as it had been very good before. Despite following it to the letter, AND chosing the healthy options nothing happened at all. I even had my family track everything for me as I thought I was going insane and missing something. So I agree that sometimes I may have eaten things that perhaps I shouldnt, but the overall pattern is not of overeating, it is far more complicated than that. I have just entered a point where all my cycles have decided to go haywire again, and I put on 1/2 stone last week whilst not doing anything different.

Hi might be an idea to visit your doc and get a thyroid / metabolism / hormone check as I can't see any lymhoedema reason why your second WW experience was so spectacularly unsuccessful. It must be really dispiriting if you are doing all the right stuff and your body is just going haywire. Good luck with getting a solution

Just wondering what hs is? I too struggle with my weight and primary lymphoedema. Two years ago I put on 15 kgs in6 weeks for no reason and no amount of denial of nice food makes it go away. Yes I eat good food and probably too much but im not eating takeaway or drinking so get disheartened. All tests always come back fine. Take heart you r not alone, I know that doesn't make us thinner just united. One day they have to find the link between primary and our other symptoms and I hope that day is soon.

I sympathise with you. I have sufferred from HS since puberty and am now into my forties. I was only diagnosed with le last year but have sufferred for about 2 yrs. I consider myself fortunate in that i have manged to catch it early and class 3 compression stocking seem to keep things under control.

Like Galtyboi i blamed the le, my wife etc for gaining weight but it was down to me. I gave up smoking about 10yrs ago now and when i did so piled on weight. I lost this, gained it plus some and 2ys ago managed to lose 5stone in 6months. I have started dieting again and have lost 2 stone but still have a way to go. For me i find that cutting out carbs and eating mainly proteins work.

I have however found it is more difficult to lose weight the older i get.

It is also important to exercise something which i find difficult to get motivated about.

I too agree with the comment above it is probably worth seeing your doctor as there could be an underlying problem.

The main thing is not to give up.

I have secondary Lymphodema and have had it for the past 7 years. I have put on weight, some of which can be blamed on the Lympodema in both my legs, but it is also lack of exercise and not always healthy eating. I do try to keep it all in balance and do not believe that you should never allow yourself the foods that are not healthy. I swim a lot and try to walk the dog and cycle to keep my legs sorted. I was diagnosed early and wear class two stockings on both legs. Swimming in particular helps to keep my leg size down, I think keeps my weight down and most important makes me feel good. Nobody has said anything about mental health and not feeling good about yourself can lead to low self esteem, lack of confidence and even depression. This in turn can cause you to turn to eating all the wrong things. So my advice is try hard to eat healthy, walk, swim or any exercise even if it is just 30 mins and of a slow pace. Small steps, and if you have a bad day get up the following day and start again. I have meet new people through swimming which has taken my social life in a different direction as well.

Hi; the weight issue could be related to your hormones; i gained a stone within weeks when i hit 40; got acne too for the first time in my life. MY GP couldn't understand it as i eat a healthy diet and exercise regularly - I also have bilateral lymphoedema and lipoedema. I followed a very strict high protien diet for a few weeks and the weight fell away really quickly; and whilst i have never been particularly slim; things settled down. The advice above is sound; it sounds as though you could have lymphoedema that needs to be properly diagnosed (you may have to push your GP here as they are not all aware of the condition and how it affects the individual). However; everyone reading this (on my soap box again!); whether they have lymphoedema; lipoedema or other health concerns should try to eat a clean diet - throw away all of the stuff in the cupboard that has a long list of ingredients; make your food from scratch so that you know exactly what is in it. I am currently reading a book called 'The Anti-Inflammation Diet for Dummies' which really underlines the need for a clean diet and explains why the food we are eating today is killing us from the inside out. for those of you struggling with your lymphoedema you really should try the Lympha Press - it is fantastic in helping to manage the condition! Lymphoedema & Lipoedema is not our fault and is out of our control - but weight management is totally within our control and if we can keep our weight within a reasonable range the lymphoedema is more manageable too. SORRY to preach; but we are the boss of ourselves; not the marketers who sell us the rubbish food we have all become addicted to!

Hi niomi. I would like to read that book. I agree with you comments. But I do believe there is far too much focus on diets - diets don't work - psychologically you feel you are going without something. Best just to eat well and exercise exercise exercise. Try walking bike instead of car. Take the stairs not the lift. Anything just move

I have primary lympheodema and I'm afraid it can and will very much come on in a huge acceleration as you describe. I now trace mine back to when I fractured my skull and damaged the back of my neck and boom, bobs your uncle I go from a size 10 to a size 22 in one year. No change of diet, lots of exercise. The acid reflux you get is classic to problems I have when my tummy area lymph nodes are overloaded, you may experience shortness of breath too. No amount of dieting will remove lymph and in fact I probably was for a long time annorexic whilst looking overweight. What is needed is compression, deep breathing, and mld. Saldly, unless you pay you wont get necessarily get mld.

Ro help yiu with your immediate struggles I personally found pilates helped open the lymph flow in the tummy, I can't recommend swimming enough, and also singing or anything like this that makes tou take big gulps full of air. Either way none of these activities can hurt so worst case you have fun and get fit but I think it might help you.

Incidentally to back up my comment my doctor measures a stonne weight loss this year and I have eaten lovely big meals, I do a little exercise. But the weight is lost when my boyfriend breaks it up with his hands and pushes it through my system because it is lympheodema. I have lost half a stone in a day by wearing tight jeans. So before you self flagilate realise the medical experts know next to nothing about primary lympheodema, and its NOT YOUR FAULT we don't get the help we should. In desperation I personally paid for a ct scan of my tummy with dr mortimer who said very clearly its lympheodema and was a bit cross I have never had any formal treatment for it nor have I still.

Thank you for that info. I will take a look at Pilates and had been thinking about getting some lymphatic drainage done locally. People just assume I am eating too much and am making excuses I seem to find that once I go over a certain size it gets worse much quicker- am guessing the weight puts more compression onto the groin lymphaptics. Vicious cycle. If I can get below 10 stone I tend to stay there, but getting there.....

Also I am waiting to have an abdominal scan so maybe they will be looking for congestion in the groin area. Was wondering whether the compression shorts, like cycling shorts, would be a good thing to try?

Hi 👋 Emma. I was born with condition and like you put loads of weight on when pregnant. It was after my 2 nd daughter was born that my legs really blew up and I still hadn’t been given a diagnosis. I got my diagnosis purely by chance after a thorough medical history with a very reputable gynaecologist. Who examined me and sent me to a breast cancer oncologist. After lymphangiogram showing No channels or nodes could be identified that were working. I was told it was Permanent Progressivs Chronically disabling and your mobility will be severely restricted for the rest of your life. I had a 3 year old and 5 year old as glad as I was to finally be able to explain to people. That these gross arms and legs have a name. Unfortunately we do live in a judgemental society and if your body does not conform to normal it is a hugely demoralising illness. You have to try all that is offered to you and find out how to live with this condition. I was lucky in that the cancer surgeon i was assigned to told me from the beginning that in my case De bulking wouldn’t work and for me to have pressure stockings on I would have to be anesthetisered to put them on and as soon as they came off The fluid would come back and Possibly make it work. So I have carried on and worked around having this body. Please try anything your offered because things have improved for some people I was just unlucky that apart from oncologists who understand the Lymphatic system. Society labels you as fat and unhealthy. I’m in my 60 s now both my daughters have not inherited this condition So I spend my time at home crafting knitting and sewing and enjoying my family x Hope I can be a friend 🙏🏻🤞

Thank you Canada91 - your reply has brought up my post from 7 years ago and its interesting to see where I am now compared to where I was.

Still overweight - in fact the most overweight Ive ever been at around 13 1/2 stone.

I have had a proper diagnosis and was seen at St Georges. I am fortunate that the lymphodema is being managed - I now am able to attend a local Lymphodema clinic instead of a 4 hour round trip to London (previously they wouldnt take me as only saw secondary)

In regards dieting. I had done a VLCD and managed in 7 months to lose a stone. This came off in the first 6 weeks - the following 4 1/2 months I lost nothing, despite being on 800 calories a day. When I lost the will to continue it went back on and more.

Doctors have done all the tests and nothing is wrong with my thyroid. Ive done the whole perimenopause and menopause and am out the other side now at 54.

I am using class 2 made to measure haddenham stockings and class 1 made to measure haddenham toe gloves - this is because the top of my foot and my toes are where it all starts.

Last year I broke my leg - the fibula just above the ankle snapped when I fell on it in the woods - ironically on New years day when I had decided to do some healthy walking each day! I didnt realise it was broken for a month, but luckily the compression stockings held it in place and it healed straight. However its now another area that has a congestion problem. I then had my first case of cellulitus in the opposite leg, when I fell again during a forest school session I was running and bashed my knee, and that night it all kicked off.

About 2 years ago I saw a different therapist at clinic who pointed out that I was beginning to get skin changes around my big toe where it joins my foot, which sent me into a panic. Since then I started having monthly MLD which I pay for, because I know it doesnt stop the swelling, but it has made an improvement in the skin because they were able to soften and move the congested lymph each time - I understand its the fluid that doesnt shift that changes over time, and Im desperate for that to not happen. The lymph moves and softens more each time, and its also helping the solid mass that developed around my ankle last year. It didnt have an effect on measurements but it is helping to keep my skin intact and the swelling to be pitting rather than fibrosing.

Ive also been looking closely at the new research thats coming out about primary - the inflammatory nature of it, and the association with obesity - not only that obesity causes it, but that it in turn causes obesity. Although it doesnt make the difficulty of weight loss easier, it is good to have the knowledge because Im sick of people assuming Im sitting home scoffing cake and thats why Im fat.

Ive also been allowed a private prescription for medicinal cannabis, which has had quite an effect on my inflammatory issues. As I get measured every 6 months its interesting to note that in the last 3 months since Ive been using this my feet have got smaller (this isnt to do with the MLD) even though my legs (which are pretty slim and not mishapen) have slightly increased, but only in line with the weight gain.

You may also like...