Toe protectors?!

[Zante]

I don't know if it's because my legs are becoming stiffer ( I have recently had the consultant double my tizanidine medication but have to wait for prescription when gp receives letter), but whilst walking I have become aware my toes are pointing upwards like really sticking up.

This is causing the ends of my toes to really bruise against the upper of the shoe. Am wearing mesh trainers so they are as soft as I can do.

For those who are mobile or not but can remember, is this a common thing with mnd? Does the condition make the end of feet stick upwards? Is there anything like toe protection that you can somehow afix?!

With the cold feet also and banging the toes whilst frozen they have become so so painful. The warm water on them in shower makes me cry and I can barely touch them to dry them because of pain.

Sorry to moan about something minor compared to most. Does anyone have any ideas? Thank you.

[Piglet]

Zante it might be wise to discuss your feet problems with your G P, it sounds painful. Do you have district nurses if so they should be able to assess or arrange for a podiatry assessment. Good luck xx

[Zante]

Piglet thanks for reply. I do actually have a gp appointment this month where I am also planning on getting the prescription for increased tizanidine in the hope it might help my foot to point back downwards.

It's like the ankle feels stiff so doesn't lay the foot downwards. Difficult to explain. Thanks. X

[Ellie]

With the cold feet also and banging the toes whilst frozen they have become so so painful. The warm water on them in shower makes me cry and I can barely touch them to dry them because of pain.

Sorry to moan about something minor compared to most.

Oh, you poor lady, that certainly does not sound like a "minor" issue at all...

Have you nice warm thermal socks and leg warmers (yes, leg warmers!!) to keep your lower legs and feet from getting cold in the first place? Plus, having to wear mesh trainers for comfort means that you can't wear warm shoes.

I wonder if you also have chilblains too?

It does sound like muscle contraction is causing your foot, ankle and toe problems, which the extra Tizanidine will hopefully relax - do you have to wait until your GP appointment just to get the prescription? Botox injections are also a good treatment for relaxing muscles.

If you have gel pads, put them over your toes , and use a barrier cream, not a spray as your toes are painful. I also suggest seeing the podiatrist.

I'm sorry you're experiencing this, it sounds horrendous... xx

[Zante]

Ellie thanks so much for the advice and ideas. What's a barrier cream? I am using vaseline on end of toes for protection for when they hit against top of shoes.

I think I do have chilblains cos they have red blotches on end of toes which are painful.

I am wearing thermal leggings underneath jeans. Legs are warm until half way down calves then its frozen. Wearing thermal socks..nothing seems to work.

I asked the consultant ( not my own) at the mnd clinic if he would write a prescription for the new dose because I will run out within 2 weeks instead of 4 if I take twice the amount. He said he will write to gp and she will then change to the higher dose for prescription. Seems a long way around.

I shall look for some gel pads tomorrow. Sorry to moan. Makes me cry its so painful at times. Even having a bed sheet on feet hurts! Thanks for everything. Xx

[Ellie]

Zante Barrier creams help protect the skin from pressure. Vaseline will give some protection but, seeing as you'll be at your GP soon enough, ask for a prescription for one - it's handy to have one but they're expensive enough to buy. I use LBF and Cavilon is a popular one, good but not as good as LBF, IMO.

Having such sensitive toes isn't really that common in PLS , or ALS for that matter, so there's probably something else going on, are chilblains usually that bad? xx

[Zante]

Ellie have taken a note of the creams u mentioned thanks.

My toes have never been this painful and only started since weekend. I know they have been sticking up for a few weeks and bashing into shoes but I think the cold feet to the point I couldn't feel them due to numbness, I have then done damage to ends of toes when couldn't feel them.

The red blotches I think are chilblains on top of the bruises! When they warm up its painful as they warm . Got Dr next week. If gets worse I shall try and get a nurse appointment beforehand.

Many thanks. Xx

[Claireflo]

Sounds really painful and sore Zante, I hope you can get some help from the doctor and things improve soon x

[TinyLady]

Zante - sounds similar to my feet earlier this year. Awful chilblains and even had open wounds on them. Ice cold all the time. No one I asked had any idea what to do.

I learnt how to bandage my toes and whenever possible kept them warm in microwaveable slippers. It didn't make much difference but a bit.

This year I don't seem to be having the same issues yet. Maybe because I'm not walking any more. Sorry I can't be more help. I ended up suffering until the summer.

Try toe bandages? (Tube shaped bandage. Message me if you want me to explain how)

[denise]

Hi Zante

Cold feet makes mine ache. I usually end up with a few pairs of socks on and I've even used voltorol to warm them up. Definitely see a podiatrist. Hot water bottle or what about hand warmers in your slippers.

Denise xx

[MMG]

My husband experienced gout (never had it before) which made his toes incredibly sensitive. a course of tablets from GP eased it. Didnt have to see the GP, the nurse at the hospice wrote to them (via email) and the prescription was sent direct to chemist.

Dont know if gout anything to do with MND, but he was only being fed PEG feed at the time so didn't think it could be due to diet.

[Zante]

I just wanted to thank everyone for the replies. Really helpful thanks.

I got my toes looked at this morning. I have like TinyLady you thought got infected open chilblains! They are open wounds and somehow got an infection in them. And bruised ends of toes from the cold. Apparently the middle toe has first degree frostbite. Hence agony when warming up.

Got some steroid antibiotic cream and a lecture on correct footwear for this time of year! The frostbite is not down to next skin layer so will heal . Need to be careful of such cold feet this winter and am off to buy some better socks this afternoon!

Thanks for your help and sorry to moan!
xxx

[Ellie]

Zante Oh my days... frostbite plus chilblains, no wonder you have such painful toes.

Today I am wearing a pair of cashmere socks (present from a friend) and thermal socks (Heat Holders Lites), and legwarmers (hidden!)

I ordered a pair of velour lined footless tights from M&S - hoping they'll keep me insulated all day.

Hope that cream starts working and your pain lessens. xx

[Tabbycat]

Oh Zante no wonder you were in such pain. I hope it starts to improve very soon.

I too had chilblains for the first time last year.

[Piglet]

Zante ahh you poor love. Yes no wonder you were in so much pain. I really hope your toes heal as quick as possible. I’d take paracetamol as well. Xx