I have recently been diagnosed with lymphoedema after months and months of swelling and numerous medical investigations re the cause. I know that I am very lucky to get such a quick diagnosis and am gradually finding my way through the maze. I have been referred to a specialist clinic for bandaging and then being measured for stockings. I am struggling with footwear but have been told to wait till I get the stockings fitted before buying any more shoes. I am currently wearing crocs in 2 different sizes but am getting fed up with wet, cold feet.
I can (just about) deal with all of this but I am in so much pain, and it is seriously getting me down. Is the pain normal and does it improve? I am on strong painkillers and sometimes they don't have any effect but I can't take anything stronger and still function. Will the bandaging and stockings reduce the pain, is there anything else I can do to help? I forgot to say my lymphoedema is in my lower left leg and foot and the pain is mostly in the ankle and along the top of my foot.
Living with lymphoedema 
Newborn with lymphoedema
primary lymphoedema 
I suffer from primary lymphoedema in both legs and feet. I also live in Crocs like you. I have the regular ones but I also have a pair of the ones for diabetics (Crocs Rx I think they're called). They have higher backs, not so many holes down the sides and extra over the toes (so it cushions the blow if you stub your foot on something!) and I find I don't get my feet wet so much. In winter I have a pair of the Mammoth ones that have a fleecy lining to keep my feet snug and warm. The Mammoth ones don't have holes in the sides but they do on the top. For the last couple of winters I've even worn my Mammoths when it's snowing and my feet stayed nice and snug
I even have a pair of their wellies which go halfway up my calves as I find I can't get into normal ones. In really bad weather I wear a pair of men's walking trainers (Karrimor I think is the brand). I find the men's ones have more width and seem comfier than women's.
I also get pain in my legs and feet, usually when they're more swollen than normal or when I don't wear my stockings. Unfortunately I also suffer from osteoarthritis in several joints and mainly in my feet. I take painkillers and occasionally they don't help. Due to my OA, I also have to take anti-inflammatories which I know is not advisable with lymphoedema but I'd rather take them and suffer with swelling than the pain of my OA if I didn't.
I have no idea what causes the pain with lymphoedema. Maybe it's due to the swelling pushing on muscles, nerves, joints and the body not being used to the extra weight that the swelling has put on the body etc? My lymphoedema pain is different to my OA pain but both can be distressing. In the early days I just wanted to shut myself off from the world when I was in pain but nowadays I don't feel like that so much, possibly as I've got used to it. Maybe once you are fitted into suitable stockings, you may find your pain will be more manageable, if not disappear altogether. Everyone is different when it comes to lymphoedema. Some don't experience pain, some have it all the time and some just now and again.
Hello jinger
Your story sounds like mine
Kent
Jinger you are so lucky being able to wear Crocs. I have tried several croc shoes and can not get them on my feet due to the bad swelling and high instep.
I recommend Cosytoes buy online. or I wear Birkenstock rubber flipflops.
I wear slippers with a rubber sole from Cosytoes when I can get them on.
Wished Cosytoes did wide fitting crocs. I have tried mens crocs on my feet they look enormous I look so stupid I could not go outside and the way people look at you like you are a freak. Unable to drive or walk properly.
Normal shoes cut into the swelling or not able to get any shoes to fit and struggle to get socks on my feet so use a sock aid.
I can not get the compression stockings on so use Circaid Velcro Strapping for support these however help with circulation but do not stop the swelling.
The only thing I find controls the swelling is having the legs elevated over the arm of a 2 seater sofa and a pillow on the bed or the bottom of the bed raised with bricks.
I wish we could find a shoe manufacturer who could help us who suffer with problem feet.
I did have a pair of boots made for me but they were too heavy and did not last long.
have you tryed JD Williams they do shoes in EEEE fittings they may be expensive but I have to buy them from there for me to
I get shoes from fashion world,they do up xxxxxx width fittings not all of there shoes but there are many with xxx fittings and modern shoes sandals and boot.hope this helps
I also suffer from lymphoedema and was stuck wearing sandals even in the winter until I found Cosy Feet, their shoes are designed for people with swollen feet. Its made such a difference having shoes and slippers that fit
I suffer from Psoriatic Arthritis and have been prescribed Methotrexate which have definitely have a negative effect on my legs.