Does lymphoedema always get worse?

Hi Folks!

My heart goes out to all of you who really struggle with bad lymphoedema. Some of you are having such a rubbish time and it seems so unfair. I am lucky that mine is still mild but it is getting a bit worse and I'm wondering if any of you can help.

I developed secondary lymphoedema after surgery for cervical cancer just over two years ago. I sometimes wear compression tights but I find them so uncomfortable and I do try to do a SLD massage but often "forget" (i.e. can't really be bothered!) I've started buying firm support tights from Boots as I find those more comfortable (unsurprisingly!) in the hope that they might help but have no idea if they do or not.

I'm interested to know if lymphoedema always gets worse. At the moment it's more annoying and uncomfortable than anything else and I don't seem to be applying myself to regular SLD and compression tights. I think I'm probably looking for some of you to focus me! Any advice would be very welcome. (Sorry for the long post!)

Skeeple x

22 Replies

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  • Hi Skeeple. I can relate to everything you've just said. I also find compression tights very uncomfortable. I always have the greatest of intentions of doing all the right things and then half the time I can't be bothered. I only wear compression tights when I'm home and then its such a relief when I take them off :) And like you, I don't know if its helping or not. Not to be too negative, if we don't apply ourselves to regular SLD I have been told it will get worse. Have you been refered to get some help? x

  • I started showing signs of lymphedema in 2004. It took awhile to get proper diagnosis. I didn't wear compression garments regularly when first diagnosed primarily because even though I was finally diagnosed I didn't fully understand the long term impact. Lymphedema IS progressive. Your limb/s Will get bigger. Finding clothes that you like will get harder to find. It does getting painful. But, the worst part is how it seems to suck your life away as time goes on. Wearing stocking and doing massage may not be fun but the alternative inyou opinion is worse. This is waste building up in your system. You have an opportunity to be inconvenienced for an hour a day doing massage verses missing out on life because it drags you down eventually. It may not be today or tomorrow, but eventually. Tomorrow I am having surgery on my leg and you bet I will wear those stocking and do the massage regularly. I feel I have missed out on to much already.

  • Hi Snaomi,

    Thank you very much for replying. What you've said has encouraged me to take what my lymph nurse has said more seriously. I'm doing SLD, wearing the horrible tights and swimming. I have noticed a difference and could evening wear my knee high boots yesterday evening which was a good measure of success. I've been god for a couple of days now - let's hope I can keep it up.

    I do hope your surgery went well and makes a real difference for you.

    Skeeple x

  • Hi Angie,

    Yes, I have been referred and she has told me I need to do the SLD and wear the tights to stop it getting worse but that doesn't seem to have motivated me quite enough. Reading the replies below has given me a bit of a nudge and I've decided to treat the massage as a meditation exercise. Not sure how to put a positive spin on the tights, though! ;)

    Good luck with your good intentions too!

    Skeeple x

  • Hi

    I was just like you in the early stages. It didn't seem that bad so I was very blasé about my condition but it gradually gets worse. You won't notice it but eventually, it will start impacting on your life and trust me it's easier to stop it getting worse early then trying to reduce it later.

    We all appreciate what a bind compression garments are but work with your lymphoedema practitioner and find something that works for you.

    I always struggled with single leg stockings. The gathering behind the knee and at the ankle was excruciating but then through trial and error I have mine made where I have a stocking which is full on my lymphie leg and a short on my good leg, and these stay up soooooo much better, that I now don't really notice wearing them, but you still get that joyous relief at removing them at the end of the day.

    Evolve your care, because you have a chronic condition that will change. Find what's best for you but treat it seriously, especially in the early stages because you will regret letting things slide. I did!

  • Thank you, Syrup. I really appreciate you sharing your experience and it is helping me not to be so blase about it. My nurse can tell me it's important all she likes but, to to be honest, it is the experience of those of you who have lived with lymphoedema that might motivate me. Thank you! :)

  • Hi skeepie

    I have primary bilateral LE (full leg). It's such a rubbish disease that affects every dimension of ones life.

    The general consensus among LE specialist consultants, specialist nurses and MLD therapists is that the disease will progress and progress much faster if you do not comply with the treatment/management DAILY protocol including: therapeutic compression ( ie bespoke garments); daily self lymphatic drainage/SLD; attentive skin care to prevent cellulitis; MLD by a qualified practitioner weekly or as much as possible (bearing in mind the cost!); and periodic bandaging.

    I get SOOOO fed up with the time-intensive and tiring daily protocol (which takes me 1 1/4 hour in the AM and again in PM). When I have queried the nurse specialist and the MLD therapist that I see weekly if I can slack off to give myself a break from tiring routine 24/7, they have both strongly urged me NOT to reduce adherence to the protocol as my LE will progress to the next stage. It's is a staged disease with 4 stages.

    The specialist nurse told me most of her patients are people who did not manage their LE with the advised protocol (by choose or because they did not know the protocol many years ago), and it has progressed hugely for those patients to a rather horrifying degree. She emphasises that it is not possible to go backward once you progress through the stages. Some people might be helped by bulk reduction surgery eg SAPL however many people (like me) are not surgery candidates for the 3 surgeries currently being undertaken to reduce LE symptoms. Sadly the surgeries do not always work for people who have them and they are not a cure for LE. For instance I know someone with secondary leg LE who had a lymph node transfer 18 months ago and has had no improvement at all while another I know has improved following node transfer.

    As much as you get fed up and tired of wearing bespoke compression etc I'm afraid you do put the risk much much higher that your LE was worsen and will do much faster than if you adhere to the treatment protocol. It makes me so sad and angry but until here is a cure for LE discovered we don't really have a choice if we want to slow or stall disease profession :-( take care x

  • Thank you, CCT. I can't tell you how much these responses are focusing me and providing me with the incentive not to be so lazy about it. I might have to keep reading them whenever I start to slack off!

    I'm sad to hear that your routine is so relentless and it makes me ashamed that I am moaning about a couple of 10 min massages every day. I wish you well with everything and thanks again for taking the trouble to reply.

    Skeeple x

  • Oh sleep is. As everyonee else says you must keep up with your message and wearing your compression garments. Mine is in my arm and is only mild but, I do find if I do not message for a few days, it definitely gets worse. How long have you worn your compression tights? It does take a while to get used to wearing them and then they become a part of you (but it is still a relief when you take them off). Also I had to try quite a few different ones before I found one which was suitable -do you have the correct one for you? My lymphoedema nurse is very good and I am able to contact her if needed in between appointments

    Please keep persevering and, hopefully, things will improve xx

  • Hi Chrissie,

    Thank you for replying and for your encouragement to persevere.

    I've had the tights for over a year but have had long periods of not wearing them at all. I've got two different makes and one make is slightly more comfortable than the other. Still not great though! Apart from them feeling tight on my legs, the waistband is ridiculously tight - and my waist is not big anyway. I've always hated the waistbands on tights but I need the tights because the lymphoedema extends to buttock and groin. (Actually, in truth I prefer the look of my lymphie buttock to the other saggy one at this stage! Wouldn't want it to get any bigger though.

    Hope your arm is having a good day!

    Skeeple x

  • Everyone is different. I got one swollen leg/ foot and then quite a few years later the other. I had multi layered bandaging in the late1980's and lost some fluid. My lymphoedema has been stable (overall) since then despite cellulitis and bunion operations. As I have got older I have been much better at wearing my compression. However, I have no idea what will happen in the future so just hope things stay as is..........

  • I hope they stay as is for you do too, Anne. Thank you for replying.

    Skeeple x

  • While I think this is an excellent site I think it can give a skewed view. I have met quite a few people with lymphoedema who live typical lives without much in the way of difficulties. None of us know whether our swelling etc will get worse but things stay as they are for ages. I do know one whose lymphoedema has got worse but she has just had her third child. Those people don't use this site so we tend to get "the worst" here, not "the best".

  • Hi Anne, totally agree with what you've said. I've been told that everyone responds to treatment/progresses/degenerates differently, but why take the risk? I've had Primary evident since my late teens but didn't know. I've always been pretty active, which I do think helps but last year (age 43) one leg/foot progressed to secondary which prompted me to see the GP. After lots of tests for DVT, cancers etc, I was eventually properly diagnosed. Since then, I have researched and taken all recommendations very seriously. I wear compression every day, I have paid for some MLD and bandaging (although can't afford much). I have modified and upped the excercise I do, lost a little weight and I am experimenting with food types and effects on my swelling. I have have also joined a proactive face-book page of a group of people that promote and support good health and excercising with LE. I have even started some gentle running (with compression) recently. I couldn't cope with adopting a 'wait and see' what happens approach... I may degenerate further but I'm going to do everything in my power to help my own health, live life and stay positive... and if that includes wearing the devils compression, I will! I'd really encourage the same of others - the more you proactively help yourself and your health, the better chance you will have and at least you won't have regrets about not trying 👍 xxx

  • I have lymphoedema in both legs...and wear compression stockings all the time in the daytime...I have jusr been given 2 new pr a couple of weeks ago ..discovered they were too long specially in the foot and consequently I had to fold them over just below the knee which is a NO NO as it then works like a tourniqnet..OOPS..so after getting so frustrated I went without them for a whole day last Sunday to my detriment ..my legs swelled quite noticeably and they began to ache...so on Monday I went back to wearing my old stockings ...but the ache didn't disappear til yesterday (Friday)..so that tells me I am so much better off wearing them I so hate wearing them right now cos we are in Summer here in New Zealand. I have phoned my Lymphoedema Nurse and explained my problem and she is ordering me 2 new pr with a short foot and I will return the ones which are too long/big

    The answer to your question yes it will get worse more quickly if you don't comply with what the therapist/medic advises

  • Thank you for your message, Ronlin. I'll try to avoid the tourniquet thing!

    I hope your legs are feeling better now.

    Skeeplex

  • Well my GP ignored me for 5 years as I kept telling him I had a problem with swollen feet, which I thought was just a water retention problem that needed water tablets. To be brief he kept saying it was weight related, go away and lose some weight, this was for three years running. Then it was weight and a lack of exercise related, go away join a gym and go on a diet this was year four. Then this last year 2016-2017, he went on a roll and told me that obesity was the cause of so many health problems and caused great costs to the NHS that we should all be prepared to take more responsibility to not only lose weight, exercise but to make a long term effort to change our lifestyles, because if we didn't we would add to the costs of health care for related health issues due to obesity. He continued to propose that I should follow Jamie Oliver's 15 minute recipes, a low GI diet and to start taking a very fast walk for 20 minutes everyday to make my lungs work. ( This is due to having asthma since the age of 13 and recently diagnosed as having COPD.) On the subject of water tablets he always turned me down by saying they were addictive, they aged you before your time, they made you want to urinate more often and could make you incontinent. So no was the answer.

    In relation to diet I think he had convinced the rest of the panel to also pursue this line of healthy eating, diet and exercise. So much so, they often said it was cheaper to live and eat healthily than it was to live on fast foods and rubbish.

    This used to make me really mad as every time i have been on a diet and eaten healthily it has always cost two to three times as much and due to the nature of being in and out of work I can't always afford to do it. Joining a Gym could cost upwards of £400's a year, Joining a slimming group can cost as much as £350 a year, and for a single person to live healthily it will cost upwards of £55 a week which is £2,860 pounds a year as a minimum. Adding all three figures together will cost you £3.610 and divided by 52 weeks, is almost £70 a week so from Job Seekers you would be left with close to £3.00 a week to do everything else. Bedroom tax, Council Tax, Gas, Electric, Phone bills, Internet, Water rates, TV Licence and Travel to Job Interviews. So the reality is you can't afford to do it. Which is also sociologically the biggest reason why people on low incomes or benefits tend to be obese as they buy bargain foods which are not necessarily the healthiest.

    I had this out with a different GP recently and finally she agreed with me that it was difficult to eat healthily on a budget and she herself was supportive of any schemes which gave named vouchers to help those on low incomes, but also to assist by providing real help for medical issues that could get worse. Hence, my recent diagnosis as having Vienoius Lymphoedemia and not just water retension, which has resulted in being given a series of clinic appointments to educate me about the condition and to measure me for compression socks.

    Unfortunately, the socks are not right for me yet, as so far they have given me extra sore ridges when forming a very tight band around my lower calf. They are also terribly painful to get on and off especially since they seem to cut off my circulation.

    In relation to whether the condition can get worse, I hope it doesn't for all of us.

    The one good thing that has come out of all my experiences to date with this condition is meeting people here on this site, meeting people in person who have the condition in the clinics and sharing information and also being shown ways to exercise (Tripodium) and how to clear L:ymph lines via massage techniques. Ultimately, I am hoping that this will help and prevent the condition from getting any worse and hopefully it will give me the will to live and work again.

  • Hi Mo,

    You've had a tough and very frustrating time, eh? I get so angry when people lecture people on low incomes about how they should eat healthily without acknowledging the financial implications. Whilst it's true that people who spend a lot of money on convenience food, ready meals and unhealthy junk could save money by cooking from scratch and buying healthy choices, the situation is very different for people who are really struggling on low incomes and might have other issues that make it hard. Although there are ways of eating healthily and cheaply it is not a simple fact of just popping into Waitrose and filling up with everything on the healthy list! It takes real commitment and expertise to do that and I wonder how much support there is for that.

    In terms of the gym, do they have Exercise on Referral in your area? Some council leisure centres will give 12 weeks free gym membership and 1:1 sessions with a trainer for people with health conditions that would be helped by physical activity. Lots of councils also do free "health walks" and the like.

    I wish you all the best with everything and hope you find some compression garments that help. Take care!

    Skeeple x

  • Thank you Skeeple. You have just given me a real brain wave. So thank you for that I am going to look into Exercise on referral schemes and see if it is available in my area. If not I might start a page off, to see if we can get one.

    I do understand that we need to be open minded and willing to help ourselves but a little help goes a long way, as what we have can be so painful and depressing. In 2015 when I had Cellulitis in my left foot the pain was beyond my threshold of tolerance, it rendered me immobile for a good three weeks and still there was nothing to help me from my GP. Instead this came from the hospital who had me on a drip for several days and then more days on a drip at home. Some 5 weeks later I had complete mobility back and I was able to start a new job. Temporary Zero hours thing.

    You are so right though it is very frustrating when so much is wrong and you really need help to find yourself brushed off for years. It does make me angry that it is only this year with a new GP on the panel that I have had the referral to the Lymphoedemia program and not long after that found this site.

    My heart goes out to everyone here, as there are people here, who have gone through so much more than me and it makes me realize that at the moment my condition would be described as mild, so maybe I'm lucky. However, I don't want to see it get any worse, so I will be doing as far as I am able what the clinic specialists ask me to do, even if it takes 15 minutes in the morning which is what I have been advised to do, so far, SLD massage and a further 15 - 30 minutes of the Tripodium exercises with deep breathing.

    I will keep everyone posted if I find anything out about referral schemes for Gyms etc.

    I wish you all the best with your Lymph issues and hopefully they will ease soon.

    I feel like researching the Scholl products being advertised at present to see if they are any good. As being a job searcher again you have to look business like going for jobs and at present I have been wearing trousers too much, which hides a lot, but it is also a shame as I have overflowing wardrobes with lovely suits and skirts etc.

    Spring is on the way and maybe brighter days will give us all something to look forward to.

    Best wishes.

  • I hope you can get the Exercise on Referral - it's so good to have a named person who gives you a programme that tailored just for you. At the end of my 12 weeks I could sign up to continue at a reduced rate. I will keep my fingers-crossed for you that your job-hunt goes well!

  • I see you live near me according to healthunlocked, so have you been going to St Johns at Moggerhanger for any treatment?

  • Hi Skeeple

    I too have secondary Lymphedema after having Cervical cancer and lymph nodes removed,

    This will be three years April

    I couldn't get on with the tights and now wear stockings!

    At first I hated wearing the stockings too

    However, I feel better wearing them now they feel like a second skin,

    Warm weather causes a few issues

    I also find standing for even short periods of time can cause discomfort but basically for me I never thought I would get on with wearing the compression tights every day!

    Stick with it and the Massage and skin care routine it will pay off long term

    Best Wishes 😀

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