Coping with Charcot Foot

[LauraMac]

Hi. Please can anyone offer me advice?

I am currently in a rigid plastic air cast boot for R Charcot foot with stress fractures. It has a very thick fleece lining. It replaced a total contact cast, which was causing me blisters. I have been in the boot for nearly five weeks now. It tends to chafe but it is better than the total contact cast, that was truly scary! Especially how the Plaster Room staff did not really seem to understand why I was so worried about a few blisters!

My question: what can I do to ease chafe/pressure points inside the boot? It gets very clammy inside there, especially in the recent warm weather. I am wearing the boot approx 16 hours a day. I was using lambswool insole and padding but that does not work so well in hot weather.

Talc? Gel insoles? Massage oils? Vaseline?

Anyone got helpful experience, please? It is three weeks 'til my next Foot Clinic appt, that is a long time to be in fear every day. And I am really scared. Also, at my last Foot Clinic they were running 70 mins late, I was seen at 5.20PM in the afternoon and it was hard to ask questions.

Thanks.

LauraMac - Youngish Mum, 2 boys, tablet-controlled DMII secondary to massive daily sterioid intake for very, very bad asthma, West Yorkshire. Just generally feel like my days are numbered!

 

[hanadr]

My T1 husband has 2 Charcot feet, now totally distorted and requiring NHs provided shoes. His advice is; Don't wait for your next appointment, insist on seeing the diabetic podiatry team immediately.
Hana

 

[WhitbyJet]

LauraMac - exxcellent advice from hanadr, you must go back to the podiatry dept and tell them about your discomfort.

Your signature is kind of sad, why do you feel that your days are numbered? Sounds as if you are suffering from depression. Do you want to talk about this a little bit more? Everyone in this foru, is so supportive and encouraging, do give us a try, no questions are silly, we can offer you plenty of time and try out little best to help make you positive choices so that you can face your future with renewed confidence and help you deal with diabetes, it doesnt have to rule your life.

Sending you a big hug ((((((((((((((LauraMac))))))))))))))))))))))

 

[LauraMac]

Dear Folks,

Thanks for replying. Unfortunately, trying the Foot Clinic team again is just not an option. My skin is intact, it's just sore. They have no scope for emergencies that are not well-defined and obvious - it's a case of go to A&E if concerned. Are you seriously telling me that would help and I would get helpful advice? Never mind the 5 hour or so wait and having to get a lift there then pay £15 I don't have for a lift home etc. I am, of course, prohibited from driving with the active Charcot.

It is clear to me that NHS Diabetic care is a postcode and personnel lottery.

Yes, Whitby Jet, I guess I am a little depressed - - I think it is a fairly rational response, in the circumstances. I think that my life as I wish to live it - driving, walking, hillwalking, cycling, running after my kids, working and having self-esteem - is now effectively over. I'm just waiting for the box!

If anyone can offer me some PRACTICAL advice re foot chafing, tenderness etc, that would be marvellous. I suspect some of the discomfort/tingling is due to the underlying neuropathy. But the boot is hot and uncomfortable, if better than the original cast.

Thanks again, best regards, LauraMac.

 

[WhitbyJet]

Laura of course you are depressed,who wouldn't be if they were faced with your situation.Thing is that I am sure that you can find ways to enjoy your life again, do all the things that you want to do. Just for now you will need to be patient and let that leg heal.
So hewn feel chafing is is possible place k little bit of bubblewrap inside to where you feel its rubbing and making you sore?
Its outrageous that you are left to your own devices like this everyone knows how important it i to look after our feet. I think you have some good cause to complain!!

How are you coping with your diabetes? Very important to keep tight control of your blood sugar levels to help you heal better.
I know 2people personally who have had to deal with Charcots foot and both are active and walking. I hope all works out for you too x x

 

[WhitbyJet]

Oh my goodness Laura I have just had a long conversation with someone who was diagnosed with Charcots foot 9 years ago.
Close contact plaster and boot are essential even if they make you feel claustrophobic.
Its ever so important to not move the affected joint or else healing will be delayed. Jane told me that she barely moved either she was in bed or the wheelchair the only time she moved was whenever she needed to use the bathroom.
It took 14 months for the foot to heal. She was told that if she moves around too much she would delay heating, that she would risk the bone becoming infected and risk amputation.
So really I think its a case of grin and bear it. Jane said she felt like a prisoner had a calendar next to her bed ticking off the days. Do you have plenty of good friends and family to help keep you entertained?
Jane has been left with a mis shapen foot she has been given special boots to wear but she is very active, goes camping and walking holidays every year.
So there is hope out there even if it all looks pretty grim right now.

 

[iHs]

Hello Laura

Good news is that the weather is going to get a bit colder I think so that will help a bit.

What might also help would be for you to get hold of some gel insoles and keep one pair in the fridge while another pair you are using? Also you could use a small electric fan and have that blowing cold air around your leg. My friend had painful neuropathy and used gel insoles from a fridge.

Hope your foot heals ok. Whatt has your GP said regarding this problem. Did he/she not give you any dietary guidance regarding bg levels?

 

[LauraMac]

Thanks to Whitby Jet and iHs. I will try the bubble wrap idea and the gel insoles, the fridge idea seems a good one! I gather Boots has a 2 for 1 deal on many footcare products right now, so maybe it is the time to try it. I wanted some advice/experiences before shelling out more scarce cash.

No advice from GP re BMs, as I am now under the local hospital team. My Metformin dose has recently been upped by them. I have lost 15Kg since 2nd January and my blood glucose control is improving steadily, although the steroids are a huge problem. But they have been keeping me alive for 30 years. I do take various supplements to try and help re my diabetes and to reduce complications - Chromium Picolinate, Magnesium, high-strength Garlic, Pycnogenol.

My BMs were always good until about a year ago, when in a short space of time I was made redundant and then my Mum died up in Scotland in mysterious circumstances - and it took 18 weeks to get a PM result! Hence had a very stressful year, got mega depressed and exhausted and the blood glucose control went. It appears I shall be paying for that for the rest of my life. Such as it is.

Whitby Jet, I am doing my best to rest the foot - much more than usual! - but total rest is an impossibility for me. I have two quite young sons (youngest is 4), a (lovely, caring) husband who works away a lot and no family nearby - like, not nearer than 150 miles away. Having been very ill for two years now (with conditions separate from the diabetes), I no longer have many favours to call in from friends! The house is a tip, I can barely manage the cooking and laundry, online grocery shops etc. My priority is being there for teh kids, homework, bedtime stories etc. No capacity to do cleaning. It is very depressing indeed. I am doing my best to rest the affected foot and never put it to the floor without the aircast boot on. The Podiatrist told me that doing so is the main cause of poor healing - folk popping to the loo in the night and not bothering to use it etc. She said I would be okay as long as I wore it without fail for the appointed time - and that would be at least three months, in her book. The hospital Ortho - who had no patient skills whatsoever - just said, review after 6 weeks or so. He seemed to blame the diabetic who gets complications - clearly, it must be their own fault! Not a good experience and I ahve no enthusiasm re seeing him again.

Again, thanks for the suggestions. It's depressing, also, to have to be glad at the cooler weather! 5 degrees C colder here today.

LauraMac

 

[stevvie1]

I'm going to have the exact opposite to you from the boot to a total cast. Can't say I'm looking forward to it. I too have two young sons who want me to play football, take them to school etc. I take the boot off when I'm sitting still and not putting any weight on it.
I am very careful but there are occasions when I don't wear it like when I'm driving. I don't have anyone else as my wife works full time, so have no choice sometimes.
I use CCS cream at present but am unsure when and how much the total cast will leave uncovered.
Try and remain positive, although it is hard sometimes and keep tuned in to this site, a problem shared is a problem halved, and everyone I have encountered has been very supportive. You can also get many of us at all times of the day which is a relief. My sympathy and best wishes to all sufferers. Stay positive and resourceful.

 

[WhitbyJet]

Stevvie close contact boot means that everything is inside of the boot, including the toes.. My friend Jane described it as being claustrophobic. It took a while before she had the proper diagnosis, at first she was told nothing is broken its just bruising and to keep exercising the leg!! A few weeks later with her leg still bruised and swollen and hot to the touch she was started on treatment for possible DVT. Eventually she was sent for am MRI scan and the correct diagnosis.
Hindsight is a great thing, both my friends Peter and Jane have been advised always mention Charcot if they ever suspect a fracture again. Anyone with higher bg levels and neuropathy is particularly at risk. Most people with Charcots don't even remember hurting their foot.
So if your leh or foot suddenly becomes swollen and feels hot to the touch do insist on having a MRI scan as it could be Charcots.
Lauren don't worry too much about your housework top priority right now is to get you well again. You have had so much stress and upset I wish I could do something to help you. Do you live near Whitby or Scarborough?
A friend of my sisters facing am operations ahead of her advertised for a live in Mothers helper would that be an option for you to help you out and give you space to recover?
Life can be such a struggle sometimes. Please do come back here share your feelings and thoughts. Everyone will want to support you.

 

[LauraMac]

Stevvie,

My total contact cast did not cover the toes, it stopped about an inch back. I guess because my fractures were mid forefoot ones. They put it too close to the little toe, though, and I got blisters after just three days due to the cast edge rubbing, so do be careful of that.

Good luck.

No, Whitby Jet, I am a long way from Scarborough area - Pennine West Yorkshire. i was made redundant last year, as I said, and life is very difficult financially, so nos cope for paid help at all. We are struggling as it is. Sometimes life is just c**p and you have to work within that reality.

I have been experimenting with aloe vera gel on my feet - it seems beneficial, cooling and moisturising.
But I remain very scared. Not looking forward to the Easter hols and two weeks of full-on childcare, with no Nursery sessions or school time to break it up.

Good luck, Stevvie. Can't tell you how much I want to play footie with my boys, too - and I don't even bl**dy like footie! Being Scottish, rugby union is in my blood - I was lucky enough to be young when Scotland was doing a lot of winning!

Stevvie - do you risk having a shower or bath? I have had conflicting advice about this and so far just stuck to all over washes sat at the bathroom sink. The diabetic foot doctor said Yes I should have a shower but to be aware that it was the time I was most likely to slip and fall and that people sometimes sustained very nasty open fractures that way. He said not to have a shower without my husband or elder son around. But I am too scared to, anyway! Thank the Lord for deodorant, talcum powder etc.

LauraMac

 

[stevvie1]

Many thanks for all your helpful advice and suggestions. I manage to shower with non-slip mats etc., but was wondering if some sort of seat would be preferable if secured or wedged in the cubicle? If you have a full cast how do you manage your toe-nails don't they curl into your skin? Anyone understand the rheumatoid factor level (XE255) count in the blood test? I gather there's a standard figure and if it falls over a set period it indicates the active part of the condition is starting to slow down. I wish the medical profession could pool all their knowledge and give it to us straight so that we could understand more fully the likely stages and outcomes.

 

[EvelynSam]

Charcot Foot disease can affect any diabetic patient or sometimes to non-diabetic patient. It is also called silent disease, because the sufferer may not able to know. Always have regular check-ups at least 4-5 months.

 

[LauraMac]

Hi Stevvie.

Hope you've got through the Easter hols okay!

I don't think the medical profession have that much knowledge to pool re Charcot! - in my limited experience, the Orthopaedic guys seem to look at quite differently to the specialist Diabetic Foot team - but the advice from the Foot team is more practical.

Am still struggling with horrendous pain, despite tighter BS control. Am beginning to wonder if I shall just have to accept pain at some point every day for the rest of y my life, not a good thought. My neuropathic pain is not too sever at night, as it seems to be for many folk. I have tried a small dose of Amitryptilline but it doesn't work for me - not much impact on the pain but a scary fast heartbeat.

Re chafing/rubbing inside an ortho cast boot - two things really help me: gel insoles and animal wool or chiropody felt placed over the sore places.

Does anyone have experience of using aromatherapy oils to try and ease Charcot? - given that it is kind of like a particularly nasty arthritis and I know aromatherapy can do a lot to help arthritis?

Thanks, guys! I have another Ortho clinic check-up this week, dreading it big time, say one for me!!

LauraMac (glad the kids are back at school come Monday, despite loving them to bits).

 

[hanadr]

Laura
if the diabetes podiatry team won't help you, complain loudly and long.I know it can make you feel awfful doing that, but I have fought tooth and nail for my T1 husband's care over the years. In the end he's got what he needs. I have to admit to going to some of his appointments with him. I've even made suggestions which the podiatrists thought to be good ones. In general, the podiatrists here are much better than the octors in their attitrudes. Plus our hospital would arrange a volunteer driver to get you to and fro. doesn't your hospital have this kind of service?
Hana

 

[LauraMac]

Hi, It's Laura Mac here. Wanted to update you re how I am doing - and ask how Stevvie is now?

I went to see the Foot and Ankle Specialist today after only 4 months wait! He was pretty good, actually, he did have some communication skills and an apparent genuine interest. He seems to think my Charcot is a mild and early case, caught early i.e. I only had it for 4 months before diagnosis and not too much damage was done. Mmmmm.....

I am now awaiting orthotic shoes - for which I have been fitted - and I will then start transferring gradually from my Ortho cast boot to the specialist shoes. He says I need to be wearing one or other 95% of the time i.e. I can wear 'normal' footwear to drive now ( yippee! No driving since end February) or smart shoes to a party for a couple of hours - but 95% of the time on my feet needs to be spent in specialist supportive footwear. He says I can go cycling - so long as I don't end up pushing the bike uphill -which could be tricky in our part of Pennine Yorkshire! He says my rock climbing days are probably over, though, which IS depressing. Climbing shoes always come in a very close fit and I could no way afford a £600 bespoke pair, also he says I maybe could not rely on the joints enough to be dangling off rock faces. Boo!

One noticeable ting is that the neuropathy IS better, as compared to when I saw his general Ortho collaeague back in April. I attribute this to high dose Evening Primrose Oil twice daily (been taking it for 3 months now) and to tighter BS control.

Back in late March, I was in despair. Now I can see some sort of life again. A life requiring vigilance and frequent badgering of the poor Diabetic care services - but a life worth living nonetheless.

Thanks to all who tried to help.

Laura Mac

 

[WhitbyJet]

Aw LauraMac -thank you for your update this is such good news. I am so pleased to read that things are much more positive for you. Pity about the rock climbing though huh??
Excellent too that your diabetes is better controlled,well done you!! Keep up the good work.
x x