What is causing my swollen ankles and the deep bands around my feet s this part of primary LE if you have the same probem How do you cope?
I am so fed up with the pain I rest as much as I can with feet elevated but I have to get up to walk to go to the bathroom or to make a drink then the swelling gets worse i have thought about getting electric wheelchair to be able to move around without any pain as i tried the manual wheelchair and it was marvelous to be pain free
Hi
I would have the same thing but it’s
completely controlled by compression socks - haven’t you been prescribed these as soon as diagnosed ?
To me it looks like you don’t have them or they are not the right strength or correct fitting. I do hope you get it sorted.
Love from a fellow sufferer
Dr removed the stockings as they were cutting off my circulation and cutting into my skin making me look much worse told me not to wear them again I control the swelling by having both legs elevated above the heart whenever I sit down this relieves the pressure and any more fluid building up but today was a bad day it's a no win situation.
I can get the swelling reduced but this will take a few days then the fluid will build back up again
I can’t wear them either!
I cannot tolerate anything that squeezes my legs. It causes pain ! So I notice my legs and feet don’t swell up as much when I move around and then put them up . Also no sodium.
Mo sodium helps but standing and walking causes me big problems so I have to pace myself and plan my day if I have done too much then I suffer badly
Anything tight around my feet or ankles or on my legs gives me a more serious problem LE clinic say they have done what they can and have advised me how to live my life the best way I can nothi g else can be done
Are you getting dents in your calfs and knees ?
What I want to know is why do the rings form
Hi
It really sounds to me like the stockings
weren’t fitted well and you may not have been advised to put on first thing in the morning. Have you been advised and measured by a specialist lymphodema nurse?
X
That was How my ankle and foot would look with regular garments. Once I was measured for custom flat knit garments it made a huge difference in the rings and pain. I would see a therapist that specializes in lymphedema. So many doctors really don't understand how to treat lymphedema. Be your own advocate and keep pushing until you get answers and results. Good luck.
My feet would be like yours without my properly measured flat knit made to measure stockings - supplied through a lymphoedema clinic. Have you been to a lymphoedema clinic? If not have you contacted the Lymphoedema Support Network for information to help you do that? They have a website and a telephone helpline.
I had treatment at LE clinic for years and measured for compressed stockings which i wore daily the pain got worse then a had a bad case of cellulitus in both legs it took months to control I was very ill. Now I get a crushing pain in my back legs foot and ankle DR told me it is sciatica i do exercises and massage daily I was told funds are tight thats why they show you how to self manage i have stage 3 LE.
The compression toe caps are a laught as soon as they are on any movement and they come off the only way I can reduce the fluid from buildng up is laying on sofa with a pillow under my knees and legs and both feet resting on the arm of the sofa for me this is the best treatment i can have that suits me as i can not get any compression garments except proskins high waisted leggings which are made of lyra. Nothing takes away the heavy crushing feeling i get.
What do people with LE eat or what diet helps I am protein low cards lots of fish and veg and meat free meatballs from Asda yummy with rice and veg and 2 boiled eggs a day
I eat whatever I want when I want, my life is rubbish enough without going on diets 😂
Low carb diet helps immensely. It sounds like the correct stockings haven’t been prescribed together with some daily mld massage. Ask your nurse whether they do multi layer bandaging over a period of 4 weeks which is great for stubborn swelling. You must wear the right hosiery from before you get up in the morning until you go to bed. This is a lifestyle you have to accept and work with constantly all day and every day. The more walking you do while you have the stockings on will push fluid around and stop the “pooling” around your ankles creating the lines which get sore. Get wrapped, stockinged, massaged and keep moving.!
I have done this treatment as you advised the walking and compression stocking did not stop the pooling and the stockings cut into my ankles that is I was told to take them off straight away and the DR helped me they were cutting off my circulation it was like a very tight elastic band I looked deformed the stockings were working but my feet and legs were fighting back it was horrendous and made me feel really ill I wish I had a photo to show but I will not be putting myself through this again especially after having cellulitus which caused me even more problems I do what is best for me to manage with the help of the nurses when required life has been very scary for me several times I have lived with condition long enough to know what is right for my body if I don't listen to my body then it fights back big time and causes me more problems I rest with my legs elevated whenever I am sat down this eases the pressure I can not walk very far due to other issues so I do what I can when I can we all have different levels of LE I had to pay hundreds o ££s for treatment I had when funding was not available I was told do we treat a dying baby or treat someone with LE I was devasted. Now itnis free I have had treatment from some wonderful nurses who taught me how to manage the condition myself and to contact them when I need them which I will do thanks for all your comments my heart goes out to everyone who has this awful disease mine was through a faulty gene and got worse after having surgery on my foot and having had cellulitus left me with more problems I find it difficult to walk some days I will never give up when I struggle to walk my legs get very heavy like concrete and I get back spasms and mirgraines the sole of my feet are very painful also I have sciatica taking Gabapentin but worried about the side affects.
Thanks again for all your comments and support it's nice to know I am not alone sending hugs to everyone
The only diet that works for me is Diet Now Shakes with a very low carb meal.
Completely agree with Snaomi, I'm primary from waist down and my leg looks like this with compression, but would be running into all sorts of problems without. I have measured flat weave during daytime, tapes, and farrowwraps to sleep in, (I'm a big fan of the farrowwraps and due to them being soft and comfy, and you control the pressure yourself, they aren't a grump enducing garment lol)
If compression garments fit properly and you're measured correctly by a lymphoedema nurse and they are the correct compression grade, they won't dig in. Not wearing or wearing badly fitted garments isn't really an option if you want to see an improvement, deff avoid digging in as it will hinder circulation. I've finally accepted over the past 25 years, no matter how hard you wish for it, you won't wake up one morning and have skinny pins. X
My legs have been like this 40yrs even with treatment wraps bandaging etc now cos i cant get compression garments on i use velcrow wraps sometimes they will make the swelling worse and I have to take them off to allow the skin to breathe
There is no cure for my condition only prevention to stop get worse or further infections I think I MANAGE very well although I do get depressed so having to deal with that as well gets too much
I'm aware there's no cure hun, I have milroys myself, and depression isn't good eh.
I hope you can find a treatment plan that helps you
Good morning Alfie looks like you have a lot of fluid in those feet and ankles. When you put them up make sure they are up higher than your hips therefore they will be higher than you heart which is very important. Also you should put on your compression stockings first thing in the morning before you do anything else. If you are not able to put them on by yourself would someone like a nurse from the docs come and help you out? You will get a lot more relief.
Know it is a pain but we all have to do the same thing.
Take care and if any of us can help futher we will, take carr xxxxxxx
My ankles and feet go like yours when I don't wear the compression tights which is a pain when I'm in Tenerife quire a lot I've learned to adapt when on holiday have no stockings on during the day feet up with good book. At night I wear the stockings when cooler not ideal but I manage . Flat knit made to measure are the best but keeping them up is a pain as the glue melts in the heat. Good luck but please go and see specialist nurse GP do not understand how to deal with Lymphordema
Hi Alfie19 - try to get back to the Lymphoedema Clinic - find another one if the usual one can't help you. Call the LSN for support. If you can't wear garments (custom flat knit), have you got a pump? Have you tried the wraps? Do you do/know how to do self-lymphatic massage (Manual Lymph Drainage)? Do you have a lymphoedema doctor/vascular doctor? Sorry for the questions. Yes, not everyone can wear compression - but this is the best way to keep the swelling down for when your feet are on the floor. With the toe caps, glue is what many people use to keep them in place. Ideally, you would have a lymphoedema therapist who can help you with answering your questions and helping you solve the problems. For people who cannot wear compression, the pump is often a great solution. You may need a short-course of lymphoedema bandaging to help get the fluid out of your feet - the pump is mainly for maintenance (not reduction).
I have had bandaging now use wraps which I wear everyday and take off at night as I find them uncomfortable
Sorry to say it if others haven' but have you been diagnosed with Lipoedema as well as Lymphoedema ?
Your legs look mine and I have the dual condition Lipolymphoedma but my feet aren't as swollen as yours.
Strictly speaking feet should not be swollen with Lipoedema but you are quite right you certainly need more help than you're getting.
As others have said the LSN is a brilliant resource for learning.
I can't tolerate garments but I'm under the care of St George's who are trying their best to find a way forward for me.
Wendy
I wish you the best of luck my Drs tell me I am doing the best I can saw a nurse at surgery who told me I need the pump but the Clinic is too far for me to get to.
There is another clinic but they tell me I am out of their area so that is why I am left to get on with it sometimes it gets out of control so I rest up for several days til swelling is reduced. It's all about what is best for you and how you deal with it. I MANAGE THE BEST I can it is a new learning curve.
Have you seen a consultant for your condition? My nurse told me that I can request to see s consultant but my area doesn’t have one so I would be referred to a different area (derby or royal marsden). Apparently everyone has the right to do this through their GP (dr Vaughn Keeley at royal derby hospital or kelvin Ramsey at the royal marsden - there may be others but these names were both mentioned to me are are both highly respected in the world of lymphoedema).
Good luck!
Thanks Wendy I was diagnosed with Milroys Neo.. offered injections in between the toes which I could not have it would cause me more problems with cellulitus.
Hope you get what you need from St. George's sending big hugs
Hi Alfie,sorry to hear about yr situation..and for everyone else here. Theres a positive vibe here,as folk try to keep positive in a very difficult situation,with so much sent to try us.
It 's truly awful that there isnt a lot of help out there..my specialist nurse retires this spring,and there are no plans to replace her she tells me 
Im trying hard to help myself in several different ways.am fortunate enough to find my stockings reasonably ok tho uncomfortable and difficult to get on/ off as i dont have much strength in my arms and arthritis in thumbs
I' m hoping to try systemic enzymes which i've read some people have seen an improvement whilst using,but i have to wait for hospital to tell me i can buy them and take them,,as i have a blood disorder that enzymes might worsen.
Anyway the one i hope to try is called wobenzyme ...and how they work is they eat up rubbishy waste from our cells etc,that for us,our bodies dont get shut off naturally.
APRILLE i feel for you! ..like you i have the double whammy of lipo and lympho. Such fun isnt it! 😼😼😼😼
Hugs back to you too Alfie..i'll let everyone know if im allowed to take them,fingers crossed X
I think a right answer for you might be a course of manual therapy combined with compression bandaging, THEN when the feet are smaller and as normal shaped as possible you'd get custom fitted for right kind of garment. Of course I don't know your medical history and situation but my therapist says it's usually done like that. Or should be. Many hugs, I hope you'll feel better soon!
Sorry I couldn’t be of help.
Wish you luck.
Thank you your comments were useful sometimes it's good to get things off your chest been feeling really low lately it's nice to know I am not alone as I felt so low and depressed doing my deep breathing exercises help so Thank you x
I also do dry brushing every day before bed and before every shower lovely feeling see YouTube
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