Update on Footwear for Primary Lymphoedema in legs and ankles

[SetFreeAtLast]

Hi

Just thought I should add the advice of my wonderful Lymphoedema nurse re footwear.

Every summer, prior to diagnosis, I would stop wearing tights, start to wear flip flops and open sandals, as I thought that letting the air get to them would help to prevent the swelling and pain.

Big error!!

The best thing to do is to wear flat Mary Jane shoes. And the compression hose!! And it works. Flip flops and open sandals just give the flesh infinite space to expand into, and allow the exposed swollen flesh to greater risk of infection and cellulitis from scratches and bites.

Flat Mary Jane shoes hold the flesh in, the strap across the instep helps to reduce friction, and being flat the foot is in a more natural position. The sacrifice of 'fashionable' shoes, heels, pointed toes etc. was small compared with the liberation from pain and swelling.

Over the years I have built up a collection of Mary Jane's in every colour of the rainbow ( I am known for being a 'colourful' dresser'!) and I have lighter weight Mary Jane's for wearing in the house, as slippers aren't good either. And even my slippers are full cover, not slip-ons.

Lymph. nurse said I could 'take a holiday' for things like weddings, etc. but quite honestly, the 'style' gain is hardly worth the pain!

I wear glasses because I am seriously short sighted; I have had to start wearing hearing aids because my husband got sick of repeating himself. So my Mary Jane's are embraced as being part of what frees me up to live a fuller life!!

Same as giving up the time each evening to the exercises and simple lymphatic drainage: TV or radio in the bedroom and I just get on with it!!

I have chosen to be liberated, not confined!!

[AnneBury]

Thanks. Looks like Debenhams sell them (I have to try on so many pairs I don't buy footwear on-line). A T bar/ strap is usually a problem for me as they don't reach far enough across but certainly worth a try. Thanks, again.

[completely-zero654 in reply to AnneBury]

Hello AnneBury, hope you are as well as can be under these lymph circumstances.

I was having a general read through and saw this post, I for one will be tracking these shoes down. Have recently bought a pair of indoor/outdoor shoes from Cosy Feet but the straps only just fit over my swollen feet. The good thing is Cosy Feet also sell straps that fit onto the on the shoes you have, only down fall is the extra straps cost £4.99 + postage but I suppose they are worth getting if you have paid a lot of money for footwear.

Saying that though would have thought the manufacturers would of made straps longer on shoes to solve the problems we have with swelling. They need someone with Lymphoedema to actually go and explain to them what we need to save having to pay extra all the time.

I know we get v.a.t. relief but why on earth are shoes so costly for us! guess it is the work, material and time that costs so much. Not fair though.

Anyhow just thought would say about the extra straps you can get for shoes, they do other bits & bobs too. Hope this is of help regarding elongating straps on shoes.

Take care, stay safe......xxxx

[holly-bush1]

Have tried Mary Jane shoes but unfortunately they are too tight for me and strap is not long enough. On another note, where are you based? You're lucky to have a lymph nurse. Can't get one in my area!

[SetFreeAtLast in reply to holly-bush1]

Hi

I was in Lincolnshire area but after some years the funding system changed and I was no longer allowed to see the specialist nurse because she was employed by a hospice....but if I had any issues she would come and give advice at my surgery but not allowed to even touch me!! But I never had any problems.

I now live in North Yorkshire and it is hit and miss as to whether the practice nurse I get to see knows anything/had any training on the condition....but I know enough and would insist on a referral to a specialist if needed.

I get a lot of my shoes from either Clarks or Pavers....but as fashions change it isn't always possible, so if I spot any I buy them so I always have some. For summer I got a great pair with a mesh top and rugged soles ideal for walking but they aren't made any more. I will try my local Timpsons who do great repairs to see if they can re-sole.

Wonder Nurse emphasised that elasticated straps were an absolute no-no as they restrict flow of blood and lymph because they work by exerting pressure on the flesh. Dire things can happen, including permanent damage to what vessels are working!!

[Chris21]

I have to get my footwear online as no shop (other than disability shop) stocks eeeee fit, but at least I an claim vat back 😀

[completely-zero654 in reply to Chris21]

Hello Chris21,

Just seen your post and I too have to get my footwear online and wondered if you have looked at Cosyfeet, DB Wider fit shoes who go up to a 8E and also have deep fitting too, have also found that Dr. Keller shoes, slippers are wide feet too. Some of the shoes etc., are far to expensive for me so I get them when they have sales on plus the v.a.t. relief which is a great help. Hope this will help you as I am also a EEEEE fit.

[Chris21 in reply to completely-zero654]

Hi, yes most of my shoes come from cosy feet, I've some from db wider fit and also sandpiper. I've not heard of Dr. Keller, will have a look at those. I too tend to buy when there is a sale on but recently I treated myself to the boots that cosyfeet have brought out, 95! I must say, they are worth every penny, I haven't taken them off! I wonder if I could get away with wearing them in the summer 😂

[completely-zero654]

Chris21 if they are comfortable I would wear them in bed, anything that is comfortable to wear especially on the feet, why not xxxxxx

[SetFreeAtLast in reply to completely-zero654]

Hi

My specialist lymph nurse said not to wear compression hose for 24 hours....so if I wear them all day I remove for bed (anyway, I have to remove them to do the simple lymphatic drainage). Conversely, if for a special occasion I don't wear them in the day (for special functions!!) she advised wearing them that night.

[Bev-1966]

Hi all, I got a pair of trainers they are very light, soft and quite roomy they are from sports direct and the make is fabric, I prefer my flip flops tho which I wear all year round.

[SetFreeAtLast in reply to Bev-1966]

Surely the whole point of footwear is that they contain the swelling, rather than giving it room to expand!! (see my post above).

[completely-zero654 in reply to Bev-1966]

Know I am late replying, but I like my toes free too. Feel to confined all wrapped up and enclosed, even when wearing compressions have to have footless ones.

[Bev-1966 in reply to completely-zero654]

My compressions are open toe too x

[completely-zero654 in reply to Bev-1966]

Ditto xx

[Trn20]

Any photos? Not sure what ‘Mary Jane’s are.

[SetFreeAtLast in reply to Trn20]

Mary Jane's are shoes that have an instep strap, which should be adjustable (Velcro is best) and cover the whole foot, no open gaps, except for a space between strap and top/front of the shoe.

Clarks did brilliant Mary Jane's that were in the Airwave, so they encouraged proper heel toe movement. Long term suffering from swollen feet and ankles make sufferers walk with a flat footed gait, because the instep doesn't flex. I have had to learn to walk properly again!!

[Gypsywife]

I buy Sandpiper shoes and get the VAT off..they are a very wide fitting called Welton, and have a long strap.Sometimes they crop up on E Bay too, and some specialist shoe shops sell them...but I buy on line. Expensive , but they are the only shoes I wear, and they do last.The black patent Welton is very useful...no polishing required!

[completely-zero654]

Very pleased that you have found some footwear and are comfortable again xxxxx

[304473]

hi there, I enjoy my open toes and choose to wear comfortable aerosoft flip flops which offer sufficiently cushioned soles. I wear my compression stockings from morning till evening when I remove these prior evening routine and bedtime. I cannot wear any closed shoes as my foot feels too compressed and uncomfortable and result in my foot itching terribly.