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
Written by
Bravesoulx
To view profiles and participate in discussions please or .
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 😂
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thank you for your advice.
Has anyone had a 2piece leg compression stocking, how do you get the thigh part on?
Free day...
Lymphedema clinics/MLD massaging in Bedfordshire 
Travelling abroad with lymphoedema 
