Hello,I have had Lymphoedema in my Right Foot/Leg for roughly the last 14 years. I was in my 20's when diagnosed and felt embarrassed to wear compression garments, and so I have never worn them.
I have seen some increase in my leg swelling this year (before it was mainly in my foot), and decided that I needed to try and take care of myself before this progresses.
The Lymphodema nurse has prescribed me knee length essential comfortable Sigvaris stockings, and I am a little worried that they are not fitting properly as I'm not sure how they are supposed to feel...
I am 5ft1 and I feel they pull up close to the back of my knee even though i try to leave a 2 finger gap. The crease also feels uncomfortable when I bend my ankle and I feel the compression is more on the sides of my foot rather than on the top where the swelling is. How do I also know if the compression is too tight please? 😬
I am so sorry for the long post and thank you in advance x
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Hello, my advice would be to get back in touch with the lymphoedema nurse and tell them of your concerns. It might be that you need some made to measure garments, or possibly a different brand. These options are available on the NHS. It is important that you feel comfortable while wearing your compression. Don't be fobbed off. I have found the need to be dogged in my approach to get the right treatment.
hi there, I’m the same height as you and also have lymphoedema in one leg. I wear my (full length made to measure) garment all day every day and it makes a huge difference to being able to manage the swelling. I also have an off the shelf Sigvaris stocking for nighttime. The first one I had was way too long for me. When I looked it up online I found they do several lengths, next time I asked for a shorter one which is much better - maybe you could check what length you’ve got and if they do a range
I know it can feel off putting to wear support garments in public, but over the years I’ve learnt to just do it. My turning point was noticing a very elegant woman wearing her arm garment, and still looking great!
The size I have is normal xsml and then other numbers which I haven't a clue about 😂, so I think it will be worth speaking to the Lymphodema nurse, I thought they would do a fitting first rather than sending them straight to the doctors as a prescription.
It can feel like we are the only ones with this condition sometimes, I have only seen one other lady with lymphodema in 14 years in one arm, but she wasnt wearing any compression and she looked perfectly happy (we was sat in a coffee shop) 😊
Go back to your Lymphoedema Nurse. You probably should be wearing thigh high too, otherwise the swelling will just move up to your thigh.
I wear nude open toe in summer so that I can paint my toenails and wear sandals. Bright toenails distract from the compression stockings. Black closed toe in winter so that I can wear boots. Others don’t really notice as much as you think. It’s important to manage your lymphoedema and be comfortable. Weight also pays a big part which I accidentally found when I was ill and lost a lot of weight. Good luck
You could be right about the length, and I do need to get the fit right so I shall go back and speak to the Lymphodema nurse.
The tip regarding the open toes is a really good idea 😄 thank you.
I have always kept my weight down and in recent years really tried to look at nutrition as I had a time of ill health, and I think that is why I have managed to keep it under control for so long and slow the progression 😊
I do chair yoga but only because I have a back problem. The breathing really helps move lymphatic fluid and gives energy. The gentle stretching helps keep the body supple. There is no competition in yoga so everyone can do it. A few people with disabilities in my group who just do what they can manage
Great advice in previous comments. It took 2.5 years of trial and error with various stocking options, before I got something that was both effective and comfortable. It took a lot of self advocating but my nurses said they could see I was following all their advice and in turn put in a lot of effort to get me suitable compression. It was worth it in the long run because my swelling has been fairly stable since 2019, largely thanks to my custom made stocking plus off the shelf toe caps.
Hello :)I agree it is so useful to have healthunlocked, for other people with similar or the same conditions to help each other. I dont think I would meet other people with Lymphodema other wise.
It is good to know that it is normal to have to try a few different options regarding stockings/compression garments, and to persevere and not give up 😊
Do the NHS do the toe caps or would I need to purchase these online?
I have toe caps as part of my prescription - like the previous responder I’ve settled with open toe sticking summer and closed in winter. And yes to painting toenails and wearing nice clothes.
I’ve just found that Birkenstock sandals for really well for me, even with my r foot bigger than my left.
I get my compression toe caps from the NHS on prescription; your nurse should be able to advise. In my experience lymphie feet/toes can be problematical and easily get infections so worth attending to foot care; minimising the swelling helps a lot. Medi and Haddenham both make silky toe caps which are fairly slimline; however Juzo classic seamless toe caps work better for me albeit they're thicker.
I really feel for you at this moment, as I understand exactly what you are going through. I was prescribed compression socks about 5 or 6 years ago now and I was in such agony wearing them as they were too tight, gave me extra ridges , made me sore, expecially where I get eczema, and then they cut off my circulation giving me pins and needles. When they came off which was not long after being put on say 2 hours, my foot and lower legs felt really weird like they had just come out of a plaster and that I was plodding on these plinths that were semi numb, Needless to say they were hell to wear. I went back to my clinic and they prescribed slightly lighter compression but to be honest these were equally bad. So, I stoppped wearing them.
At the point of not wearing them, I went a bit mad on trying to keep fit, bought a rebounder to use, a step machine to use and did a lot of stretching and bicycle exercises from my bed. For a good 3 years things improved drastically, they improved so much that most of the time my feet looked normal for most of my days.
Today, and for the last 15 months my problems have come back and I am having a lot of pain this time. I Still feel that I can not exercise for the pain and I am about to ask my GP what should be my next step. Indeed this is because the pain is affecting how I sleep and I am convinced that I have a lump in my right leg, which is my smaller leg.
Many years ago I asked my gp for water tablets, as that is what my dad was prescribed for his swollen feet and lower leg issues and they worked for him. But my GP refused and said it would make me incontinent earlier as the water tablets made you go to the loo more often and weekened the bladder, so no water tablets for me. You see I thought the water tablets would help with my lymphoedeama.
But like you we wll both have to bite the bullet and get to the GP and ask about ideal treatments for our current status of poor health. All the best and good luck. Mo
I don't feel the GP's know alot about this condition unfortunately, but once referred to the Lymphodema nurse she has been very knowledgable, I am going to have to go back to her and explain about the stockings scenario though 🙈
I have issues with my bladder anyway, and I have read a few times that with Lymphodema you need to do what is counter-intuitive and make sure you drink plenty water, I think we and doctors should all have the opportunity to be educated on our health/Lymphodema.
Strangely enough I have had a lump that appears on my shin, on my lymphodema leg when I lay it flat. It has been there a few weeks now and is roughly the size of maybe a 5p in diameter.
I am really sorry to hear you are in pain 😔 and I do hope you feel better soon... I have found that this forum helps me not to feel so alone, please reach out to people too if you need to 😊
Some GPs have knowledge of the condition others not. It is hopefully not a case of pot luck when I get my apppointment, as I don't really fancy going back to the Lympho clinic at ST Oswalds as they only treat with compression and I fel I need something that is stronger than paracetamol.
Strange enough when i am at my Pc all day this is when my Lymphoedema is at its worst, but today my legs are aching but nowhre near as painful as yesterday but then I have been dealing with my household chores all day and I have been very busy on my feet. However, I start a new job next week and if I could get some proper pain killers, maybe I could fight this from getting any worse. and maybe even improve it.
I do know there is no cure, you can only manage it.
I totally get what you are saying regarding the pot luck of whether you get a knowledgeable GP or not, and I really do hope you get the right treatment to help you soon...
I work in an office job Monday-Friday and I notice that my foot/leg is worse when sitting in one position for hours at a time, and a bit better on days when I'm running around after the children and doing household chores, so light exercise is worth keeping up 😊
Thank you, wishing you the best of luck in your new job 😊🍀 and hopefully we can all manage to stop this progressing to live happy lives 😊🤞🏻 x
I think you have hit the nail on the head here too, with all of us wanting to stop our Lymphoedema problems from worsening. I have just taken two more paracetamol for pain and it isn't even touching it. So I am set for another restless night. You know the strangest thing is, if my skin texture was changing and the skin colour was red and hot, I'd know straight away it was celucitis, as I have had this before too. But my skin feels cool to touch, it is shiny and quite hard with the swelling, due to it being full of lymph fluid. The fluid gathers throughout my day and is at its worst at night. During the summer this problem is exasperated by having to do anything in the heat of day.
However, You are right if you can keep busy it is generally better, but sitting at a pc for any length of time is a curse. As a teacher all of the jobs I get in schools, colleges, industry or with private providers, involve long spells standing, which is ok and long spells sitting, which is not ok. Some offices, make allowances for those with lymphoedema by providing a work station where the height can be altered to suit your needs. So you can have a standing workstation, In some instances a touch of a button and you can alter the height of the desk you are working at. I would love one of those. So, I am going to ask if it is possible for this in the classroom where all of my teaching will be based. Shy bairns get nowt, so no harm in trying.
I think if lymphoedema was classed as a disability employers would have to make reasonable adjustments.
Any way here's hoping this pain eases soon, to at least allow me a good 4 or 5 hours of sleep.
I do hope you managed to have a restful sleep and that your pain has subsided. My swelling gets worse in the heat too, as I think most people's does... it really feels unfair at times that this affects us when we are trying our best to look at everything we can do to help ourselves with a lifelong condition that has no cure, and that it feels people without it or not in this field of medicine, hardly know anything about it.
We can take comfort in the fact that there are others out there too, and people wanting to help, this forum is a fine example of that 😊
I am not a medical expert by any means, but do you think the pain could be the amount of pressure from the fluid pushing on nerves or is it a different type of pain?
There should be more help available, as lymphodema is certainly disabling for a number of people.
The adjustable desk is a great idea, and you are right, there is no harm in asking. I am currently looking for a new job, as I would like some extra money for my family, and have also been looking for a new house for a while now, but to no avail. I must like to make things harder for myself 😂
Hi Mo,I agree with what you are saying, I find it hard to get a correct balance between standing and sitting. Too much of either gives me a lot of pain. I've retired now but when I was working I went to the company occupational health department and they assessed my condition as being a bona fide disability (as it should be).
To be fair to my ex employer (a large University) they did provide support and understood that I had needs that nobody else had. Getting around the Uni was considerably harder as time went on and I also have arthritis problems so they arranged regular physio which helped a lot. If you don't ask, you don't get. So be assertive and let people know that you have needs. Good luck!
I had to ask the college I was teaching in sometime ago to move all of the classes to a classroom in the main block, this was to avoid walking up a steep hill with Asthma and painful swollen lymphoedema and tons of resources and student books. They weren't very amused at having to do this and my line manager thought I was being awkward. I have since left this college as I felt entirely micromanaged in the last two years, I was there.
In relation to my current problem, I have severe cellulitis alongside lympoedema at the moment, which is not easing with flucloxacillin. I am also taking paracetmaol and this isn't going anywhere near treating the intense sharp pains I am having. AT 8 apm today I will be ringing the skin department to find out if they can treat me intravenously for a few days, as I need something stronger to treat this problem .
It is even more of a problem at night, as i can not get comfortable to sleep.
I couldn't get a GP appointment today. But a locum did ring me. He has prescribed codeine to take alongside flucloxacillin that was precribed last Thursday. I am praying for some pain relief tonight and tomorrow, if I get none by the end of Thursday, I will have no choice but to go to A & E. Pain has been that bad today, I feel I might be losing the use of my legs.
I have never had pain like it. Running from my foot right through to my knee and thigh. At times it is a bad pain and at other times it feels like parts of me are being stabbed, as the pain is sharp. The pain in my left leg is bad also.
I actually think I should be on intravenous drugs not oral, but the NHS is messed up. Last Thursday I couldn't get a GP appointment, so ended up at a walk in centre, where I felt the doctor knew very little about my condition and today I couldn't get an appointment again. This is after a weekend of pure torture with pain and struggling to walk and after 4 plus days of flucloxacillin and paracetamol. Not working.
So, now I have codeine and according to the instructions in the codeine packet, pain relief should come within 30 minutes of taking the tablets. It is 2 hours later now and I am still waiting. My pain goes from a 9/10 to 12/10.
Fingers crossed that after my last antibiotic and painkillers tonight, I manage to get some sleep.
I am so sorry for my late reply, and I am hoping that you have some relief of the pain by now 🙏
Alot of doctors really dont know alot about lymphodema and how cellulitis can present differently with it, like we have said before and you will need to push and advocate for yourself 🙈
Bedford Boy has given some good advice, please look after yourself and get some different antibiotics if needed.
Sorry to hear that you are in pain and having problems Mo.That antibiotic you are on actually made me feel even more ill. Plus I came out in a painful red rash all over my entire body. My GP swapped it to etheramyacin (or something like that!) and it started to help get rid of the infection within 36 hours. I have a "rescue pack" now after a few arguments with the surgery incase I get a cellulitis attack out hours (which happened a couple of times).
On subject of i. v antibiotics, the hospital tried everything you can think of and the sepsis was rampant by now. They were prepping me for amputation of my left leg and this ild doctor (wish I knew his name) urged them to give me tycoplanin (not sure of the spelling). They did hourly blood tests and eventually it showed the sepsis levels were falling thank God! No amputation!
So perhaps a change of medication would be beneficial to you?
I have unfortunately spent most of today in pain and in tears. I think you might be right about a change of medication.
After the electician has called tomorrow morning, I am going to ring the skin department at the RVI hospital, as earlier this year I was in their care, for severe eczema, which we seem to have beaten.
However, with cellulitis the texture of your skin changes it becomes pimply and dimpled in places and of course it is quite inflamed in colour.. But the worst of it is the pain it is excrutiating and at times it does feel like nerve pain too, however, just after midday tomorrow, I will have been on Codeine for two days. 2 little tablets 4 times a day. And again its not touching the pain I am having.
I am seriously worried too, as I think they have got my medication wrong, because instead of things alleviating they are escalating and spreading. Today, I actually felt pain in the upper part of my right leg behind and in front, whereas for most of the week the pain, swelling and redness has been in my lower legs and feet.
Also worrying is the fact that I am supposed to start in a new teaching job on Tuesday and I feel in no fit state to be working at all. So if I don't start in the job, I doubt whether they'll need me in a month, as they will just go to an agency and get someone in.
I am hoping that if the hospital agree to see me tomorrow, They will get my treatment right and I will know what to do from there.
I am sad to say this but the NHS to me is messed up, as in 2014 when I had cellulitis for the first time, I was on a drip for 5 days in a hospital ward and then the district nurse came to me for 5 days to deliver antibiotics and pain killers intravenously in my home. And after this I had an appointment to review my condition and further antibiotics were given for a good 2 weeks or more.
My cellulitis was relieved but the appearance of my legs did not show recovery for several months.
Fingers crossed something goes right tomorrow or rather tonight, as I am hoping for some sleep.
My heart goes out to you, it's a frustrating thing to have to deal with. Hopefully you will find some help with the hospital.I was using codeine for years and it got to the point where it didn't work anymore so the doctors swapped it for diclafenic. I was on that for a while and the same thing happened, so the doctor reluctantly gave me tramadol. Now a couple of years down the line the same thing again, where there don't seem to be the same pain killing effect. The doctor told me that there is nothing else I can get as tramadol is a very strong opiate based pain killer. Frustrating that mankind can send a man to walk on the moon but they can't stop our pain! I wish these scientists would concentrate on the more important every day problems we have instead.
My heart goes out to you, it's a frustrating thing to have to deal with. Hopefully you will find some help with the hospital.I was using codeine for years and it got to the point where it didn't work anymore so the doctors swapped it for diclafenic. I was on that for a while and the same thing happened, so the doctor reluctantly gave me tramadol. Now a couple of years down the line the same thing again, where there don't seem to be the same pain killing effect. The doctor told me that there is nothing else I can get as tramadol is a very strong opiate based pain killer. Frustrating that mankind can send a man to walk on the moon but they can't stop our pain! I wish these scientists would concentrate on the more important every day problems we have instead.
I am pleased to report that I did manage to get some sleep last night and when I awoke this morning, I had very little pain just stiffness.
It is now almost 1 pm and I can feel some pain when I stretch my ankles and the front of each leg is still stinging but my feet are still very stiff, I can flex my feet today, which is a bonus, as since last Thursday I have had no wriggle movement at all in my feet, as they had felt completely locked, locked with fluid, stiffness and pain. I have a dullness or sense of feeling loss in my upper left and right leg, on the front of the leg but not the back or underneath the knees.
As I felt a million times worse than this yesterday and for several days before today, I am going to see whether I still feel the same at say 3pm today and if I do, maybe I should ring the hospital then. Strange enough I was itchy last night before bed and my skin has bruised in patches. So just not sure what I will do yet.
I do know I will order the shopping in for my two 75 year old relatives and get a delivery time for them on Saturday, before I do anything else, as they have nobody here to help them at the moment, as their daughters family is in Turkey turning themselves into lobsters.
Fingers crossed for a turn around in pain and cellulitis.. As that alone will give me a chance to do something about the Lymphoedema which I now know needs addressing with something other than compression. I am tempted to buy a revitive machine, as it says they are good for odema, poor circulation and nerve pain.
Thank you for all your advice and help. Especially the information about painkillers, something I will have to watch.
Hi Mo, I forgot to say that I have a revitive machine and it's been a godsend so far! If I know that I have lots of walking to do, I always do a session on it to get my circulation going. My one has a separate sticky pad that you can use on any part of the body to boost circulation. I use it on my arthritic knees to get the blood flowing. My wife uses it too, even though she don't have lymphedema, she feels the benefits of better circulation.You can buy it vat free as you are registered disabled and exempt from the tax. There's many copies on the market but I went for revitive and have no regrets at all.
My leg was saved from amputation but it looked like I was in a bad fire by the amount of swelling and tissue loss. It's permanently disfigured and the doctors said it was a life long condition that has to be managed. I can walk on it but with great difficulty. I thought at the time, at least I've still got one good leg. That was 2006 and now in 2024 the other leg is affected too. Not quite as bad as the other leg, but now I'm constantly "managing" both legs. But to be honest I came so close to losing my left leg that I'm just grateful to still have them, warts and all (pardon the pun). I read on this forum other people's problems and I think I'm relatively lucky some days! A day with no pain at all is a slice of heaven!Good luck with the rest of your treatments.
Bless you for sharing this. I am pleased that you have saved your legs from the surgeon and I hope that you never have to face him with the same problems again. I wish you continued good health with your management of the lymphoedema and any pain you have as a result.
I feel very motivated to hear of your success. Thank you.
I am going to get a a revitive machine this week, as an investment into future health and wellbeing.
I am attending the skin clinic tomorrow and I hope I manage to sort out some proper treatment for my cellulitis there.
Feast or famine. Seen no doctors apart from the young one in the walk in centre a couple of weeks ago and now today I see three.
But the news is not good. They want me to continue with the Flucloxacillan and codeine, as they too believe it will eventually work. However, they have added a small 30 gram tube of Dermovate to presumably to tone the redness on my legs down over the next 1 - 2 weeks. With limbs the size of mine that will be 4 -5 days worth of treatment. So again I will be beging my GP to repeat the prescription.
It is not getting through to anyone that I need something to work faster which I do know is the intravenous route. So I am at a loss. Spent my day in tears again as my torture continues.
One of the skin department drs went on to add they would write to my GP and suggest they send a district nurse out to me once or twice a week to apply lymphoedema bandaging as my legs are not suitable for compression stockings or socks. I did tell them, I am not sure how that would fit in, as my new job is 8 am till 4 pm and I won't be getting home till 5:30 or 6 pm Monday to Friday.
I also asked how does wearing bandaging fit in with a daily shower before work? This is because I am not of retirement age and have 6 more years left.
We haven't reached any of those hurdles yet, but what we see here is that your Lymohoedema has got much worse and this needs management now. The cellultis will go with the Flucloxacillan and as you have so many weeks in your system now, you need to complete with this until it is gone.
So, I feel completely let down by the NHS not Acting any quicker and not going down the fast treatment route and sadly my thoughts again have been on the dark side, due to the torturous pain, I am having to put up with.
I am currently taking 8 codeine a day and that is not doing the job. I am just lost. I can't take Ibruprofen as this would interact with other meds, so all I can do now is add in, a paracetamol each time I take the codeine and see if that does anything.
Also bought a Revitive ProHealth machine today, but felt nothing after an hour in either foot. Will try again tomorrow morning and see if that does anything then.
Just down today now and don't know when I will feel well and even if, I get to start in my new job.
Hi Mo,Mixed blessings eh? I get what the doctors are saying about the anti biotics, as it states that on the packet. However in my case, as nothing was working, they did change anti biotics a couple of times before I was put on iv with tycoplanin. So it appears that you can change meds mid course. I find that with doctors you sometimes have to be a bit assertive if you think they are going down the wrong path. No doctor likes to hear opposition to his diagnosis but be persistent I say!
When I was in hospital for 2 weeks, I had a tissue viability nurse come in each day to wrap my leg. When I was discharged they arranged for a district nurse to come in to change my wrapping each day and every third day swap over my iv from the left arm to the right & vica versa.
Imagine my frustration when the district nurse said she didn't know what to do! She hadn't been trained. So I did the wrapping myself as I'd watched the hospital nurse do it every day, and they called out an ambulance to change the iv ( much to their annoyance). Luckily for me he was ex army and he was very quick! I complained about the fiasco to my surgery but no one was interested. How pathetic was that? I ended up having the paramedic guy out a few times as nobody else seemed able to change it. Good job he wasn't on holiday eh!
With your revive you might benefit from moistening the soles of your feet first. Use a wet wipe or something. It makes better contact that way. Persevere and I'm sure you'll get the benefit from it. Good luck!
Thank you Bedford Boy for the advice. I will try wetting my feet. But wow an untraied nurse, who didn't know how to do the wrapping. What is the country coming too?
Getting the right level of help or treatment today is very frustrating and even more time consuming.
I now know they don't listen to patients at all. They do what they consider to be the easiest thing, as this doesn't inconvenience them and they always support one another. Never admitting when they think someone has got it wrong, as that means they would have to correct someone else's mistakes. For patients you are not going to win the battle and instead you are seen as an awkward customer.
If I did this to my students, I would be sacked. Possibly sued for not providing the education they need at the appropriate level. As the cycle of clanning up continues as they definitely see themselves as superior beings. Most annoying, maybe Ai will take over next and there' ll be no need for a doctor at all.
My experiences over these last few weeks have left me in a worse position than at the start, mentally very down, weepy, angry and just frustrated beyond belief.
Just a simple thought - after you have pulled them on - do you, in several places, put your flat hands aroundnd the stocking and do little 'shifts' downwards - so the tension is neutral? If I am telling my g.ma to sucks eggs - many apologies.
Thank you for the suggestion, this could be an idea to try. I think maybe I should give it a few more tries. This is why I thought the fitting would be with a nurse rather than trying to do it myself at home...
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Thank you for your advice.
Wrong stockings?
compression machine
Exercise without compression with no adverse effect, so far so good, I hope it continues!
ARE compression garments a con?
