I have lymphedma but have had no treatment as yet , ,b... - LSN
I have lymphedma but have had no treatment as yet , ,both legs swollen badly.How long will it take for the swelling to go after bandageing.
Hi there, your swelling should start to decrease gradually from the first day of your bandaging but it can be a slow process depending on how badly swollen your legs are. I haven't needed to be bandaged so I can only go on my experience which required regular massage and compression stockings which gradually reduced my legs to a near normal size. I am sure that someone who has needed bandaged will be along shortly to help but, as with many illnesses, LE differs from person to person so advice given will be a guideline and your experience may not necessarily be the same.
How long have you had lymphoedema and when is your treatment due to start?
Linda
Ive had llmphedema probably around 12 months but took no notice of it as i thought it would go away ,i also have arthritis which i thought was part of the problem .I went to my gp about it and was told it looked like Lymphedema and that an appointment would have to be made at the surgery for a doppler test to see if i can start using compression stockings ,but shortly after i made the appointment i got a phone call to say they don't do doppler tests at the surgery .I had holliday booked and said i will make an appointment with gp when i get back ,so i am due to see gp on wednesday next to see what the next step is and see where we go from there .
Galtyboi
( p.s Thankyou kindly for your reply)
Hi, I had an intense course of bandaging (Coban2) which made a difference almost straight away. I continued bandaging myself as required and wore compression garments in between bandage sessions.
I now no longer require regular bandaging and maintain my leg using class 3 compression stockings. I agree with Linda that LE will vary massively from person to person but the quicker you have the condition diagnosed and the quicker and more proactive you are in dealing with it then the better the results will be.
My swelling was around 50% with a huge loss of movement and pain. I have managed to get the swollen leg to virtually normal size now and get the movement almost back to normal as well.
Good luck and keep us updated on your progress 
Hi ,Thankyou for your reply .I must say i had almost thrown in the towel and thought i would never be able to wear trousers instead of tracksuit bottoms ever again and stay indoors and not go out as i find it next to impossible to find shoes to fit swollen feet,but since i have read about other good people who has the same problem ,it has given me hope.My legs are very swollen and my feet will swell up quickley ,if i dont' wear tight stockings or even elastic or velcro bandages to keep them down ,this is something i do myself and has not been told by any professionals to do so,maybe it's the wrong thing to do but it's either that or stay indoors and let my feet swell.pain and stiffness is also something that has come with it ,but i take painkillers to deal with that.Thankyou so much for replying once again and i will keep you updated when i see my gp next week.
Galtyboi, good luck with your doppler test. That will determine how much compression your veins can cope with and whether your LE is affecting the veins as well as the lymphs. The practitioner doing the test should be able to let you know quite quickly, though i think there is some complicated maths involved.
I don't think bandaging your feet and legs the way you have been is the wrong thing to do as it is unlikely that you can get enough compression to do any damage. Sadly the pain and stiffness can be part and parcel of the LE but is dependent on how swollen your legs are, among other things.
I am in pain when I have overdone things or if I get too hot, but others are different. Hopefully you will be one of the lucky ones and that will ease for you too. Please let us know how you get on, and good luck. Linda
Hi Linda,
I haven't had the doppler test as yet but i am not sure what my Gp has planned for me when i return for my next appointment,iss she going to send me for bandageing or do i have to have the doppler test first i am not sure ,but i do know one thing Linda ,my legs are getting bigger and i am getting to the stage where i am a bit shy about going out in public as i am not sure if people will stare at my legs .I just wish i could start the bandageing and that would be a start ,i don't really want it to drag on with test after test and go no place .
I take Co-codamol painkillers for the pain and i find they are good and they also help me to sleep as on a few occasions ive stayed awake all night long because of pain .but they seem to do the job ok.
I too have to take it easy because of the arthrithis also on my legs which limits my movement and also stops me from exerciseing, which in turn makes me put on weight ,so i have to watch what i eat as well .
I know exactly what you have been going through Linda and it's no joke ,but i find it's great to talk to people who are in the same boat as myself ,it makes it a lot easier to cope with it when you can share with people your symptoms ,people here will be able to give you the best advice.which is brilliant.Thanks again Linda for your reply.
Larry
Hi Galtyboi,
I also have Le in both legs and it took me a couple of years to be diagnosed as secondary following cancer treatment six years earlier!! Once you have been diagnosed, the treatment can start.
Everyone is a bit different but basically it requires a lot of patience and remember that you need to be disciplined with yourself to stick to the basics. Once you have been bandaged and given some MLD, you can be measured & fitted for compression garments.
I work in the Middle East where it gets really hot - also my job requires a lot of standing - yet I never remove them until I am at home and can keep my legs raised up .Also have some blocks to raise the the base of your bed - gravity is a great help to drain the fluid from the legs & feet.
It is a bit of a postal lottery in the UK as to what kind of treatment you get.. Sadly there are still many GPs who are ignorant of the condition - so make sure your not fobbed off - remember it is the sqeaking wheel that gets the oil- lol!
Good luck and keep us updated with your progress.
Cheers
Christo.
Hi Cristo,thankyou for getting in touch .I agree in what you say ,many Gp's have not had much training with Lympheodema and it's baicially a lottery to see what treatment you will get ,so i must say i am in good hands with my Gp ,she has been brilliant and couldn't do enough for me ,so i am sure she will do her best to see i get good treatment ,
i am looking forward to start bandageing so i can get started and get the swelling down as soon as possible hopefully..
It's a good idea you got abour raiseing your legs ,i have tried that a few times and it has helped ,but the swelling comes back..
I will let you know when i start treatment and will let you know how i get on ,
thankyou Cristo for getting in touch ,i very much appreciate it .
Larry
I have lymphoedema in both legs...was diagnosed last November...legs are so much slimmer because of wearing compression stockings that I have thrown away all my track pants ...I will never wear them again...I now wear capri pants with my black compression stockings...and in the winter months I will wear leggings for added warmth over the compression stockings with my capri pants ...hey I also now wear capri-length jeans...
I am Happy for you Ronin ,i wish i could throw away my jogger bottoms too and get back to wearing trousers again .I am glad the compression stockings are doing the business for you ,best of luck to you ,keep in touch ,i like to know how everyone is getting on ,as it helps me too ,thanks ronin for your reply ,very much appreciated .
PS forgive me if my spelling is not up to scratch .
I think it varies on each case. Mine was a few months because i had broken skin, The comfort from the compression bandages was immiediate, Once the swelling had gone the below knee stockings in my case work well, Good luck it seems demoralising at first but its worth it in the end, good luck.
Thanks Morganite ,i had broken skin also a while back and leaking of fluid but it's all cleared up now ,i am hoping it won't come back as it is still very tender .I am looking forward to start the compression bandageing and get started .Thankyou for your reply and your good wishes ,very much appreciated ,i will keep in touch and let you know how i get on.
Larry
galtyboi
your welcome we all need support, we can help each other and its better knowing you arent alone, i felt very alone with it all at the beginning but now this site and organisation help us all, x
we are all here with much the same problem ,I is great to have good people around you where you can talk about our ilness and the treatment we are getting to make it better ,it all helps knowing you are not alone ,and there are decent people who are only to happy to help you ,it's brilliant .
I am currently having layered bandaging on my feet and and legs. It started on Monday and will continue for two weeks. The swelling reduces with each bandaging. The physiotherapist comes every third/fourth morning (Mon, Wed, Fri) and the bandages stay on in between the visits so no showers! I remove the bandages, shower and apply Epaderm to my legs and feet before her visits. I am really lucky that I don't have to attend a clinic - I understand that this is a local fluke arrangement.
The physio comes once/twice a year. In between I wear Farrow compression foot bandages and foot and leg wraps.
I used to buy extra wide shoes from Cosyfeet (a great company) but my feet got so swollen before I was diagnosed that I still had to cut out the insteps - I got used to people noticing my home-made 'sandals' in the street. My work had taken me to three different towns over six years and three different GPs failed to identify LE. Sadly, I can't wear Cosyfeet's excellent products any more but shoes are made for me through the orthotics clinic at my local hospital -on original referral by my local GP. They are a bit clumsy but better than my home-cut efforts.
Last month I went to Ireland for a wedding. I was able to buy a smart suit online. I wore my compression wraps on the plane - got 'the looks' at Newcastle airport when I took off my shoes but Dublin airport was so busy for the return flight that there wasn't space to notice me!
Best of luck with your treatment. The bandaging will help and you will be delighted with the reduction in swelling. As you will have read above in other comments, some people then manage with stockings and don't have to bother with wraps.
Hi Hex ,and thankyou so much for your reply.i tried cosy feet shoes but as i take a size 12 i couldn't get them in wide fitting ,so i found a company online called WIDER FIT SHOES LTD,so i ordered my shoes from there and i must say they have been very good ,they go up to size 14 and extra extra wide fitting shoes up 8e wide.,so now i order from their catalogue if i need them or online which ever is easiest.
since i joined L,S.N i have been educated more and more everyday about lym and i must say that the people on here have been brilliant .I know now what to expect when i am referred to the hospital by my GP.I can't wait for the bandageing to start and i am looking forward to getting my large swollen legs and feet back to the way they were with any luck.
I will ask them about Farrow bandags when i attent the first day i get called .I am happy that things are working out great for you and i wish you all the very best and thankyou once again for your reply.
Thanks for the tip about Wider Fit Shoes. And I am glad that I am not the only size 12! Cheers.
I should also say I had broken skin which developed into ulcers from last July which resulted in the District Nurses visiting for over 5 months...they referred me to the Lymphoedema clinic and I started seeing the Lymphoedema therapist in November...and as I described in an earlier post I am progressing very well...I do have a review with the lymphie therapist this month and am eager for the results cos I know that with the weight loss the report should be great!!!!
I know what you mean ,i had much the same with my broken skin and i had to have it dressed and creamed twice a week in the surgery and eventhough ithas all cleared now ,the skin is tender and i hope it dosen't break out again .
Im glad you are progressing well and you have been an inspiration to me i must say .and i am sure you will have a great review from the therapist next month,let me know how you get on .
ok folks I had my review today...I was weighed...have lost 7 kg since January 9th...my legs were measured and then the measurements were calculated to see how much fluid lost...just under 1 litre from my right leg and about 120mils from my left leg...BUT my left thigh is a little bigger...so when I have my next review in August the therapist will assess my left thigh again and will make a decision about if I need a thigh-length compression stocking for that leg.
But she was VERY pleased with my progress.. She said the skin on my legs is looking great
So I am a happy lassie tonight...
you guys are so helpful that i love ya all ! two things - thigh high stockings are a nightmare, well they were for me and the national health suspenders , if i was a female i'd scream the roof off 
maybe sweetie they'll work for you, i hope so because before they started rolling down my legs they worked the best out of everything that i tried. ( down to class 2 below the knee now 
) and Jovipak - what's that ? Lymph honey are they for real, can you wear them to bed ? if they work you just may have given me the best thing since sliced bread. like many of the others here my bed is raised but sleeping is hit or miss and i really do want to sleep soundly so here's to google and Jovipak ! oh before i sign off, galty i have both oa & ra, both legs with le and rice paper skin so i feel ya, hang in there help will come but what you do for yourself is far more important. laters peeps.
I am happy for you Ronlin ,delighted your fluid is reducing.I was at my doctors last week and she has made an appointment for me with hospital.Don't know when i will be starting treatment.I can't wait
Hi Galtyboi, just wanted to say "never give up"! There is a lot that can be done to manage Lymphedema but I think it is fair to say we must be our own doctors as so many proper doctors have little or no knowlegde about this mysterious condition. What I mean is that we have to find information ourselves and rely on other patients knowlegde.
You mention a Doppler test, you can also have a Lymphoscintograpic [spelling] which shows how fast the lymphfluiid travels and if there are blockages.
It can take a long time to get the swelling down to its minimum but usually there will be progress quite quickly. I have also been bandaged with Coban and Profore but the therapist I go to now uses Comprilan shortstretch bandages that I also use when I wrap my leg at home. You might want to consider a slip-on nightgarment - I use a Jovipak, if you want you can see it on my blog.
Also, when your swelling has gone down as much as it can getting the right compression stockings are essentials. I find, and have heard from others, that a good fitter makes the difference. Try to do some research about fitters in your area. It doesn't have to be the nurse or therapist that does the measurements and ordering. Find one that knows about Lymphedema and has many years of experience.
I wish you luck. Know that there are lots that can be done and that you will learn to manage this.
Kind regards
LymphedemaGirl.
Hi Lymphedema Girl,
Thankyou so much for that wonderful information which i have written down and taken a note of,I got my first hospital appointment on July 11th and will have many questions to ask and i will be able to name the different bandages which is a great help.I will also inquire about ''Lymphoscintograpic'' which i now know about ,thanks to you .
I appreciate the time it took to reply to my question and for the very valuable information you have given me .I thankyou so much for your help and your kindness ,all the good people have been so good and so helpful ,i don't know what i'd do without LSN ,thankyou so much.
Galtyboi.
Hi I found that the doppler test was not very helpful, but the lymphoscintigraphy test was very helpful. It showed where the blockade was, and I am now looking at surgery. Now as for the lymphoscintigraphy test let me tell you; they inject a radioactive dye between the big toe and the next toe. The needle is not bad at all, but when they start injecting the dye I wanted to leap off the table. The pain was some of the worst I have ever felt. I did stay still for the injection and was able to complete the test, but I did scream and cry. Will I go through the test again? You bet I will. It is the BEST test for diagnosing and following the progression of lymphedema.
Good luck
Antonia
Hi All ,just to let you know ,i had my hospital appointment on July 11th and was very well looked after by a wonderful lady who wasted no time in measuring me up for Farrow Wraps,which i received in the post on Friday.I am fortunate my good wife learned from watching various videos on You Tube,how to wrap my legs and is a wonderful help to me ,for which i am grateful.The first day was spent trying to get used to them and today wasn't as bad so i am gradually getting used to them.Once again thank you all for your help and support ,and i will be in touch with updates from time to time.Larry
I have lymphedema in my right leg due to radiation therapy following cancer surgery. I've never had bandaging and I don't know how badly your leg is swollen, but I use a compression stocking, 30-40 compression (mmhg) during the day. At night I use a pneumatic compression machine for about 1/2 hour. I've had lymphedema for about 7 years. There is an eight pound difference between my normal leg and my affected leg. I hope this is helpful.
Swelling will start to go down almost immediately but slowly. Keep up with the therapy, don't lose hope.
Good luck
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