Years with no treatment.

Years with no treatment.

Im pretty sure Ive had lymphedema for years but never diagnosed, just always passed over as edema in a fat lady. Too many times overweight people are not treated the same as other patients and thus our problems, including lymphedema, just keep getting worse. Over the last 3 yrs Ive lost nearly 100 lbs but my legs are still the same big, ugly tree trunks! Im not sure if any of this could have been slowed or ended but Id like to know.

55 Replies

  • Dear gramjane you certainly look very skinny to me congratulations on losing 100 pounds that had to of been very tough to do but you look very beautiful and happy birthday if the cake is recent . So sorry you have to suffer with this lymphedema monster I think it is much harder for women than it is for menperhaps we are a little more vain I know the looks of my husband's legs don't really bother him if mine looked Like his I would be devastated

  • Hmmm thats interesting cause I was just thinking its probably harder for men. Women can wear split leg skirts or long skirts, not men, unless they are brave enough to go ethnic and wear African or Hawaiian skirts. Right now I can even begin to wear pants. But it sounds like maybe your husbands pump keeps his a more normal size. The picture is my 70th birthday the middle of August. Being older and having lived with this crappy thing, I guess its just part of life. You take what youre dealt and do the best you can. No sense in whining, it doesnt change anything but it does do good to vent I think. Sorry, I do tend to ramble on, but thanks for listening. Good luck to you and your husband. Always ready to listen 😊

  • Except for being a fairly newlywed ( two yrs the end of Nov) I really dont care any more. I just try to cover up and go about life. I will keep trying tho to find some answers. Thank you for the lovely compliments!

  • If both legs are swollen (similar size) but not feet it could be lipodema. Sounds like you are in the US. The UK based Lymphoedema Support Network, , has information on their website on lymphoedema and lipodema and posts information overseas.

    Early treatment should help manage lymphoedema (can't comment on lipodema). Highly unlikely it would have ended it. However it is never too late to start treatment!

  • Thanks AnneBury, I have heard of lipodema, probably from this site, but I still dont know what I have. My feet have swelled in the past, like normal swelling, but go back. I thought it was because I never go barefoot or wear sandals or flip flops as I think this lets your feet spread. But the message therapist (went for a few weeks) said he didnt think so but never mentioned lipodema. My left leg is mammoth right now, the right is hard and lumpy, sort of pertrified. So I dont know, but you've given me something to think and ask about.

  • Hi gramjane - I am 77 but my 'fat legs' were only diagnosed as being primary lymphoedema in 2006. None of the treatments taken - bandaging, flowtron, manual lymphatic drainage have made any difference. Apparently had been untreated for so long nothing I did could undo the problem/damage. Because I had lived with it all my life, like you say, I just got on with things. Finally stopped wearing skirts/dresses in 2007 - I do not like the look/size/colour of my legs. Not particularly bothered by what other people think to be honest, but prefer my legs and feet covered. However I have always looked after my skin and also my feet/nails. Countless attacks of cellulitis have left my skin badly discoloured and lumpy but I am still here! Swelling in my ankles, feet and toe make walking somewhat difficult, but things could be so much worse, couldn't they? Take care of yourself (and especially your legs!)Xxx

  • Hi! Sorry me again. If you dont wear skirts and dresses, what do you wear? I cant get my legs in pants unless I buy them 4 sizes too big and then take in the waist and hips.

  • I wear wide leg trousers which I buy from Marks and Spencer. My biggest dilemma is finding winter boots. I have been lucky to find wellington boots which accommodate both my swollen legs, ankles and feet. These are the first wellies I have been able to wear in over 30 years. I have an allotment so they are a necessity in the winter months.

  • Thanks. Im going to look into those things😊

  • All of this sounds very familiar to me as well and I can empathise with gramjane and Anne16.

    I had primary LE diagnosed at about 12 but had been wrongly diagnosed at 10 with flat feet which resulted in 2 years of electric shock treatment - different times then, I am now 62 and have never been offered any type of support, in fact it was discovering this site that I found out about different things you are all doing to try and make a difference so thanks.

    I have become less conscious of my swollen legs over the years- if others find them offensive then tough- it's their problem.

    I have recently retired after working 45 years which is bliss but have gained weight through inactivity so am working on that.

    You can enjoy life with this affliction- I have had a long working life, 2 kids and 2 stepkids and 11 grandkids, overseas holidays + loads of activities so don't give up.

  • Goodmorning Diane999, I love your positive attitude, it does help to get us through rough times. Im so sorry that you have suffered this affliction from such a young age. Maybe thats why you have taken care of yourself in a very positive way. I think thats one reason I hang in there too. Too bad we have to throw in the weight factor as well, I think Ive been working on that one since I was 5 yrs old. LOL. Good luck. Diane999 and thank you.

  • I was 38 when I was was diagnosed with lipadema. The doctors said it was my job from standing all day or my weight even when i was ill and went down to a size 0 but my legs were still swollen they still said it was my job (hairdresser). It was only when I hurt my back and went to see someone privately they noticed my legs and I talked to his wife and she said it was lipadema I had. I went back to my doctor and he just brushed it of after a but of cellulitis 2 months ago and now see a lymphadema nurse at the age of 43. I still haven't had any test done to make sure this is what it isfor sure but I do get some tights to wear 👍 and work out at the gym 5 days a week x x

  • I just cant imagine how many of us go undiagnosed and untreated. Or treated wrongly. Its definitely time for you to get a new doctor! There are no knowledgeable drs in my area, so its all experimental for me! You're so smart and fortunate to work out, keep it up!

  • Mel1313 I wish I had your energy, but I'm impressed that you work out in a gym with this awful condition. I attended some knowledge sessions that were being run at my local hospice recently and when I asked whether they thought it was safe to attend a gym and to join a fitness class the nursing staff were not keen at all, suggesting that massage and gentle exercise classes ran by experts in lipo/lymphoedema was a better option, so it turns out that Tesco's not far from where I live run one. So I have gone to a few sessions, it was very relaxing and lovely to meet people with the same or similar conditions but honestly the exercise was so gentle you have no hope of burning off any excess fat. Still the fact that this exists shows that there are some things to go too. I would say that the exercise I took part in would be fine as a gentle warm up and stretch, the sort of thing you would do before starting to work on increasing your metabolism and again at the end in calming down.

  • Hello deadfootmo gad you found somewhere to go. Igo to the gym every night on the treadmill for an hour fast walking and the bike for 10 minutes swim 3 times a week (run in water) I know I'm very lucky than most people and I do try to keep as active as possible and keep my weight down. You are lucky to have met people with the same condition I have never met anyone with lipadema. I wonder if they have these types of classes in Edinburgh. You keep going and enjoy and if you feel you could do a bit more talk to who runs the class x x let me know how you get on

  • Mel1313, you are amazing and you know something else since coming here a couple of months ago, I have loved talking with people who care and have something to share. I am also learning a lot from the troubles of others and feel that I am not alone in this. So whoever started this off deserves a medal and a big Thank you.

  • Hello Gramjane, You look fabulous and if it's your Birthday I hope you had a good one.

    I do think that as a fat person we are treated differently by doctors who see that we have a problem that is self caused. Self caused because we eat too much, or eat the wrong foods or we drink too much and then on top of this lot we must sit down a lot and have a sedentary life-style.

    Most of the latter though is very far from the truth. I don't go to the gym or go running but I am active, I walk to most places basically because the shops aren't too far away and on top of that I have to budget seriously so that getting on a bus and paying to go somewhere has to be worthwhile.

    Whenever, I have had a job I am also active on my feet for most of the time teaching.

    When my feet ankles and lower legs started to swell years ago it was always when on holiday when the journey took too long or the weather was extremely hot. But they would go down the next day after a decent sleep. However, the swelling became more frequent and booked an appointment with my GP.

    My GP told me it was water retention due to being overweight and that I should make every effort to lose weight. In fact every time over the last six years this has been my GP's attitude, Lose weight, eat a med or low GI diet, walk at a pace to increase your metabolism every day for 20 minutes and join a gym etc. You work live in the fast lane, then Stuck for diet get Jamie Olivers 15 minute recipes. Go away and lose weight.

    Just before diagnosis at a hospice, I went to get a second opinion so booked an appointment with a different doctor and she was lovely, she suspected that what I had wasn't just water retention so thought my GP was right not to prescribe water tablets as I had asked for those, but instead she arranged for me to meet a specialist in Lymphoedema.

    So on attending my appointment I was measured with a scanning machine, then I was physically examined and measured before the practitioner nurse told me it was Vienuos Lymphodema. I was prescribed compression socks just before Easter this year and I am still trying to get used to them today.

    I am not really a happy bunny as the socks give me extra rings right round my ankles and mid calf, but I keep trying them. Thing is I find that they are so painful to wear I can't wear them any more than 2 - 3 hours at a time. I get numbness, pins and needles, pain, cramps in the calf, and the extra rings. Even when I wear them every 20 minutes I am trying to rearrange them as I wear them.

    If I thought for one moment that losing weight would reduce my problem I would do it now, other than that I live with this monster issue that does affect me in everything I do.

  • I've had real problems with my hosiery this year, and was changed from circular knit to flat knit fabric. At least with a scanning machine your measurements should be more accurate than using a tape measure every 10cm up the leg.

  • Now that advice is priceless! Thank you so much. I've heard horror stories over prices and fit and never using them after paying a goodly sum for them

  • In the UK we can get two sets provided free, every six months. It's quite likely they won't last long with a moderate amount of walking, and getting them dry after laundering can be a hassle, so it's usually recommended to buy extra sets of the heavier flat knit types. As these are often custom-made, the price is higher, and it's doubly important to make sure they fit comfortably.

    A relative of mine lived to her nineties with primary lymphoedema. She didn't have hosiery, and the skin on her legs looked in good condition. Her children haven't been affected by the condition.

  • Im amost afraid to have any made. What if the don't fit? Do they do them over? And I'm not sure if I can really stand to wear them so its interesring to learn about someone who didnt.

  • By the way, the scanning machine mentioned in this thread is for measuring and comparing limb volume. It is not used for hosiery measuring. An experienced lymphoedema specialist with a tape measure and a sound knowledge of compression hosiery is the best way of getting a good fit. Circular knit hosiery is often fitted and is, in many cases, not appropriate for lymphoedema. Flatknit stockings, made to measure, although thicker, are easier to get on and do not dig in.

  • Hello Whitesugar, I thought the machine I was measured with , measured the amount of fluid in my leg and where that fluid was gathering. I am going to check out a gym today, fingers crossed they employ someone who can really help as I also have Asthma and COPD.

  • I've just checked with someone who goes to the Derby clinic, where a machine is used to measure for their hosiery.

    I have experienced made to measure flat knit hosiery digging in, unfortunately.

  • They just sound so hot and bulky. I'm way too old to be vain about my legs anymore, (except that I do keep them covered), so I just cant wrap myself around being all trussed up. I realize they help the swelling down but how important is it. Ive been dealing with for at least 30-40 years not doing anything cause I didn't know.

  • What is the difference between flat knit and circular knit? Does anybody know what this means for the wearer? The ones I have are made by Mediven and in examing the texture it looks like an extremely heavy column knit of about 200 denier or more, they are made with 76% Polyamid and 24% Elastan and there is no stretch in them at all. They are also as much as a problem to get on as they are to get off because of this no stretch or give. I can manage to get them on myself but getting them off I need someone else to help me. It is however, very frustrating and exhausting in equal measure especially since I have Asthma and COPD to contend with too.

  • Flat knit have a seam up the back. They are knitted flat on a loom then stitched up. Circular knit are knitted as a tube (like any ordinary stocking or tights from the high street) and tend to try to find their smallest circumference. This is the reason they grip too hard sometimes at the ankle or at the top of the stocking if the leg shape is wrong for circular knit or the sizing is not accurate. Most circular knit is 'off-the-shelf', but you can have it made to measure. If a leg is anything other than a 'normal' shape a flat knit stocking is the better option, more comfortable, skims over any lumps and folds and is easier to put on and take off.

  • Oh my goodness, thank you! There is so much to learn and the $ kills me, so thank for any help.

  • Thank you for this information. I must then have flat knit as they have a very wide seam at the back. It is unfortunate for me that I do not find them comfortable at all. I had such a deep sore and a very red ring round the ankle joint and another at the base of my calf, they are unbearable as they act like a tourniquet within less than 90 minutes, I cursed like mad the other day when I tried them for almost three hours in the evening and suffered with numbness pins and needles and a terrible throbbing and stinging in my toes.I do know that there is no way I could wear them for the 23 hours a day I was told I needed to wear them for. So I will get back in touch with the nurse who fitted them.

  • Please adk about the consequences of not wearing them. I just cant stand the thought for the very reason that you describe. And I only used some compresdion sleeves not stockings.

  • Hello gramjane,

    I'm trying not to think about the consequences as I still have 12 years of working life before I am allowed to retire. I have obviously had the condition a long time but was left undiagnosed for five years and had I not been seen this year then this would have been 6 years.

    The view taken by the specialists in the hospice is that if you don't wear the socks, the stockings or the tights they prescribe is that they haven't got the time to waste when someone else may be more responsive to treatment. There was an indication in one of the information or education sessions I attended that the condition can get worse.

    However, the alternatives to the compression, seems to be a form of bandaging, which they suggested was very awkward to teach the individual how to do them, however but for some patients they would be removed and replaced by a trained home visiting nurse twice or thrice weekly.

    The latter would be a bit awkward due to being a teacher that needs to go to work some days when the supply work comes in first thing in the morning. The other thing is a lot of people in the UK with this condition are registered disabled and are in receipt of disability allowances, i have not gone down that route as I feel that at 55 I am not about to sell myself short on a career that is young, (Changed career late on) as teaching is a such a joy, its like a drug to me, seeing young people progress by gaining qualifications and confidence.

    After my next visit to the hospice, I guess I will find out if anything else can be done for me. Fingers crossed all goes well.

  • My Dr. gave me a good talking to about the hose and has sent in a prescription to be apprpved by my insurance. I sure am glad the weather is getting cooler, maybe I can get used to them easier. Thanks much!

  • I will keep my fingers crossed for you.

  • Sounds as if many of us have many other health besides lymphedema. I too have a breathing problem. It came out of nowhere and also no answers for a paralyzed diaphragm. I got myself off the oxygen for a a year or so but am back on it now.

  • Singing or swimming are the two finest things you can do for difficulties in breathing. I can't swim but I love singing along to Kiri Te Kanewa. Classical singing was my former career. But I was diagnosed at 13 years of age with Asthma and in 2008 after recovering from Legionella (where I had a real battle for my life in hospital), I was diagnosed several weeks later as having COPD as a result of being a long term asthmatic, as I do not smoke.

    In relation to singing I last sang professionally in 2010, but my voice just didn't feel right. Strange enough though the other day in the car I heard a John Denver song called "All this Joy." It had a seriously religious feel to it, so I listened to it again trying out the occasional line or two and the soprano part of my voice is still there. So although I may not be good enough to take up where I left my professional career off, but I am going to join a classical choir. So I can still enjoy life and something else I used to do. My feet won't be stopping me.

  • I love your sweet spirit and love of life. Its way more fun to find something we enjoy and pursue some new interests than sit and whine. Thanks for the uplifting boost!

  • YIKES! That is exactly what I'm worried about. Sorry that you are the one with the horror story, it is usually me. But I havent been there yet.

  • This was in response to Deadfootmo.

  • Hello GramJane, Thank you. What really made me push for help this year is the fact that on one or two occasions in work, standing teaching for a large proportion of time, at the end of day I was really suffering with such severe pain it would have been easier to crawl home than to get the bus.So I am pleased I sought a second opinion despite the treatment socks not working for me. I hope everyone who suffers from this dreadful condition finds a treatment or resolution that works for them.

  • So DeadfootMo, these stockings do not fit you correctly. Stop wearing them and get back to the nurse who fitted you. Compression should be comfortable, not restrictive and certainly not painful.

  • Thanks Whitesugar I really needed to hear that!

  • Sounds like you have the same doctor as me! According to him everything I see him about is because of my weight! I was also told by a rheumatologist that I should see my dentist about getting my jaw wired so I would lose weight from not being able to eat! She didn't go to charm school!

    Ive had swollen feet and calves for many years, kept being told its my weight. I found this forum and the support on here was amazing giving me the right things to say to my gp. I have now seen a lymphoedema nurse who didn't question the fact that I have this and support socks were given to me. However I had the same problem as you in that they cut in around my ankles and back of my knees and Id have to take them off after a short while because of numbness and pain. When I saw the nurse again she has given me a different kind of support. I now have velcro wraps which I wear at home and as advised by her wear them to bed and so far they are working and they are so much more comfortable. Only thing is you can't wear shoes with them so I only use them when home watching telly.

    Hugs Joolz.x

  • Thank you for this. I'm pleased it is working for you. Went for a job interview today for a new job, I chose not to wear the compression socks for the obvious reasons I would not have had anyone available to help me to get them off when they became unbearable. However, when it came to going home my toes felt red hot and tingly, my feet ached and they were swollen again and it was only 3 pm in the afternoon. I wish someone would invent a miracle cure.

  • Amen! So sorry for your pain. It's always something to deal with and if we choose wrong, we pay. I'm waiting for that miracle too!

  • Oh dear I hope they have gone back down a bit, they are so painful when swollen aren't they? Good luck with the job. Id have this problem too I can't get them on or off on my own. I even have trouble putting these wraps on myself but they are easier than the hosiery on my hands. Joolz.x

  • Oh my gosh! I hope you never go back to that jerk. I swear you should have told him to have his jaws wired shut until he learned some compassion and manners.

  • I think its something consultants learn in med school. How to be obnoxious in one easy lesson. Its not the first one to say something rude to me. When I first got arthritis in my knees I was sent to orthopaedic surgeon who sent me for an X-ray and told me "You are too fat to even examine but you need knee replacements which I won't do because you are too fat!" That was 8 years ago and I was a size 16, Id hate to think what he would say to me now as my mobility decreased due to needing knee replacements which they won't do and my weight has increased year on year despite eating healthily. Another told me I would lose weight if I was "locked in a room with only water". My answer to him was that I would get malnutrition causing other problems. What an idiot!

  • So sad and maddening. It's too bad you didn't get your knees done. I had both of mine done in 2003, way heavier than size 16. I had a wonderful, caring surgeon and both legs were very successful. It was one of the nest things Ive ever done. I could barely walk and with excruciating pain. I didnt have all of my other health issues at that time. Is there a chance you could find a different surgeon?

  • Hi DeadfootMo, I just reread your post and realized I didn't reply. Sorry, sometimes I read really late but make mistakes if I write. Or, fall asleep and accidentally cancel the whole thing. Anyway, thankyou for the lovely complement. 70 yrs old is a milestone for sure. I'm so proud of you for staying so active, it takes real effort to stay fit. I wish I had been more diligent when I was younger, now with my disabilities I cant even walk without a cane or walker. But I too stay very busy, even still working outside some days, using my walker and dragging along my oxygen. I pray that all of us will stay active and independent as long as possible

  • Hi gramjane I had the same problem initially. Primary lymphoedema runs in my mothers side of the family. My mother got no treatment apart from diuretics which really did her no good. When I went to my GP I told her I wanted referred to a consultant as I did not want to end up with poor mobility like my mother. My GP tried to tell me that it was because I was overweight and that I should just lose weight but luckily I had already researched online and I knew more about the condition than she did. She didn't refer me but when she retired 6 months later I asked my new GP for a referral and got it, that was 10 years ago. I have had cause to speak to a GP recently about my lymphoedema and was again reminded about my weight. Rightly or wrongly I told him that GPs often do not understand lymphoedema and he clearly didn't so could he please refer me to someone that understood the condition, which he did. Don't give up, go to your GP and ask for a referral, it will improve your life and give you the support that you need.

  • Hi Dipper (cute name), Thanks for your encouragement. I wonder how many "heavy" people are routinely dismissed. It's so frustrating. The Drs treating me now clearly know very little. I'm on an extra heavy duty round of diruetics and finally this morning my worst leg is down slightly. Something I read about lymphedema said that no matter how much weight you lose your legs will stay heavy.Yip! They are right! I'm going to post a recent experience I had concerning diruetics. Watch for it and let me know what you think.

  • Hi gramjane, I call myself Dipper after those little brown and white birds you see in Scotland bobbing up and down on a stone at the side of the river. I have always told my sister if I come back in the future that I would like to come back as a Dipper.

    It is very frustrating, I take a herbal remedy for fluid retention in the summer if my legs are very swollen but other than that I use massage and more recently compression stockings. I look forward to your future posts

  • Hi i wear compression wraps called compreflex by SIGVARIS they have a website these are great as you do them up using straps with Velcro on the ends. I got them because being disabled there was no way I could get the others on. Have a look at the website and see if you can get these as you adjust them yourself.

  • Thank you Loramay. I will check that out and hopefully find something that workks for me.

  • Hi gramjane i am similar to you,as i recently lost 100 pounds on a low carb diet,but found to my dismay that i hadnt had fat legs at all,i had problem legs!

    Doesnt really seem fair does it when we have worked hard to lose weight but left with chunky trunks?

    Saw a wonderful specialist nurse who unfortunately retires next year and doesnt know if she will be replaced. She told me i have lipoedema and probably some lymphoedema too. I wear circular knit stockings right up to the top of my legs,and kept up with a waistband - not the comfiest contraption!!! - and because of something someone on this wonderful site said, i asked her about flat knit,which the member here had said is what is needed - circular knit is for venous problems apparently.

    Anyhow am awaiting their arrival, and in meantime persevering with circ knit stockings,which i detest as theyre hot and uncomfortable to wear ...and not being a morning person, i resent having to clamber into them pretty much as soon as i get up. And the prospect of wearing them for life fills me with gloom.

    Someone on here told me to allow myself to go thru all the attendant emotions that accompany the oedema diagnosis,and its good advice,coz much as we try to be positive,a lot of feelings do come up that shdnt be ignored.

    But if they stop things getting any worse,its worth wearing the stockings...Like you gram,i have gone about in blissful ignorance stocking free for years and feel fortunate that despite the years of neglect, my legs could be a lot worse. Having said that i have fat ankles and a fold of fat above each knee,pad of fat in front of each knee,which is quite unsightly.

    Sorry to hear you have additional health too ..

    Sucks doesnt it! * sigh! *

    I use essential oils in a carrier or mixed in with my moisturising cream to massage my legs and am trying things like nettle tea..anything i read about i will try. I have heard of one or two people who have made a complete true this is i dont know,but it cheers me up when i think of it,so im gonna believe it IS possible ! X

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