Charcot-Marie-Tooth UK
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Orthotic Insoles and Muscles

I have been wearing, my new specially made insoles, from orthotics. I have been suffering, from bad pain on the ball of my foot. Also, when I take my shoes off, my feet and ankles are really painful. Do most of you, who have needed to wear, these insoles have any, issues/pain breaking them in? I am in my 50's so was wondering, if it is a bit late trying to change my feet? They have lost a lot of muscle. I think that I managed to prevent, getting worse previously due to my previous life being so busy, going to the gym, working and raising three boys. I couldn't ever run on uneven ground but I could on flat ground and because I enjoyed running, I would often push past pain in my feet and muscle pain. The worst was when I tried step exercise classes and kept falling. lol. I did wonder why nobody else would fall. I had a lot of muscle pain, as a child. A bit more than normal growing pains that required gp input. Did any of you have severe growing pains, in your leg muscles? I still try to keep moving as much as possible. Even when my legs are too tired to walk, I sit in the wheelchair and use my legs to push me, while getting on with housework. I refuse to give in, to it. Though worryingly, my podiatrist told me that my calf muscles, are virtually non existent now. My quads are obviously picking up the slack too and are really weak now. So, my knee hyperextends and grates quite bad. Orthotics also gave me a knee brace. Is there anyway, to get this muscle back or is this just the 'normal' course of CMT? Though, always clumsy on my feet and with pain, often the norm, I did enjoy my walking. I love nature. I stretch every day and use music, to help motivate my walking too. I can no longer, get out without wheels but people often comment saying I look too well, to be in a wheelchair or mobility scooter. People often question, my genuineness too, which makes me feel bad about being in a wheelchair anyway. I heard my neighbour complaining, believing that I am a fake but more likely, because I got a drop kerb, which ever so slightly affected her parking by about a tyres length and her family can no longer park right over my actual gate up on the pavement, which used to prevent me from getting out at all, prior to the drop kerb. Why do other people, feel that they need a say, on our disabilities? My neighbour attempted to have a say, where my drop kerb was even going. She wanted my drop kerb elsewhere. Even, though it was the council's decision.

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Hi Lou.

Just a quick reply, so that you know someone has read your post! I have to have my shoes made via the Surgical Appliance Department at my local cottage hospital. When I wear them for any length of time, I also have pain in my feet when I take them off - the longer I have been wearing them, the harder it is to walk for a while afterwards. As to muscle wastage, this is the way this disease goes - for some it will hardly affect them (for instance, my Dad didn't really have any problems until he started falling over in his late 70s, which is when he was diagnosed), whereas I have always had problems with walking and mobility. I would suggest you get a referral to a Neurology Consultant at your local hospital, if you have not already had this, to discuss your queries - they may be able to help with physiotherapy and such like. (Oh - your neighbour sounds horrible! )

Dawn x

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Thank you Dawn. I think I got this condition, from my father too but he wasn't affected either, until his 70's. I broke my 5th metatarsal too, from simply stumbling, several years ago. Whereas, my mother even now, is always solid on her feet. When I take my shoes off, after wearing them, I also have this pain, which can be, fairly bad. I also stumble and go over my ankle more. I end up having more accidents, at home from falling. My medial arches are, really very high anyway and I think that I had, built up my hopes, about these insoles and special shoes, a bit too much. There is less pain, while I wear them but it's painful after wearing them. I see orthotics in a week or two, so will mention it then. My orthotist/podiatrist said that if things don't work out, then my hospital would need to make my shoes. I have very little padding left, on my feet. I am lucky in some ways that I had made it this far, with my feet and still had a full life, until now. My older brothers, have became affected now too, in the past couple of years. I have read some of the research but there can be, grey areas in some of the personal details in how this condition, actually affects those who live with it. I know that it seems to affect, others differently and no two people are exactly the same but obviously, there are similarities. I noticed research stating that there is a correlation, with the age of 50 when charcot marie tooth disease, appears to get worse with everyone. This didn't really hit me properly, until the age of 50. Thanks for taking the time, to write Dawn. I really do appreciate it.

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I have enclosed this research too. charcot-marie-toothnews.com...

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I was never a athletic child but could run. I always worked quite physical jobs as well as bringing up three children, I have always been clumsy. At about 50ish a lot of things changed, i developed drop foot and had frequent falls, my gait changed to compensate. I was issued with AFO's 3 years ago. They are wonderful i walk with confidence and yes i also suffer especially with the base of my foot, i get hard skin and have to reduce with emery roller and a good foot moisturiser, I pad under as well. I have massive muscle loss in my calves. My biggest problem has now become my hands, I have had to give up my job in pharmacy the strength has gone my fingers they are gradually clawing, it is frustrating when im fumbling in my purse. Or for instance last week when i couldnt get the notes out of the cash machine and had to ask a stranger to do it. I miss being able to have long walks with my husband. But i have to add that i also have a paralysed diaphragm which makes me breathless l use a respirator at night. There are so many different issues with CMT and im developing them all. I have to say i am a very positive person and manage to deal with each issue as they occur. I too get people saying how well i look its a case of the swan lovely on top and paddling like mad underneath. When people stop saying that i will worry. After a recent operation the physio came to my house and seemed quite frustrated they couldnt offer me any aides. The thing about CMT is you gradually adapt your life as needed. So when i could no longer climb in the bath to shower, we had a walk in one fitted, we had to save for it but worth it. My DLA helped at the time. l have since had it taken away l was me at the interview which went against me, but thats a whole other issue. I hope you manage to sort out your orthotics problem/ Sorry if l have waffled on.

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Listening to others with this condition, is a big help to me, so please do waffle on. I appreciate it. It makes me feel sort of, less alone with it. It was a long battle, getting my gp to listen. Three long years. I sometimes wonder about my breathing too, as I get morning headaches and headaches, in general. Plus, I wheeze and never did before. I am aware though that not being able to move, as I did could be making me unfit too. This is the bit that I worry about. I am like you in that I could run on flat ground but add, any uneven ground and then I would go over my ankles. I really miss walking outside. I haven't taken to a wheelchair or mobility scooter, very well. I have fairly bad body image issues. In this cold weather, it makes me feel more comfortable with a Ninja hood on, lol while on my scooter, to keep my face warm and nobody can see me. So, I don't feel as bad. A woman came up to me and said that I look like I may rob a bank. I told her that I might. Obviously joking. I try to keep a sense of humour and like you, remain positive. mmeditation has been, helping me too though. If anyone wants to learn there are many, guided meditation, videos on you tube. i sometimes use meditation too, to help me sleep. it does work. it does take a lot of practice but really helps me. i learned it, in the 90's. i spend most of my days now, staying positive through, educating myself too. i keep my mind focused and distracted, from thinking about my pain etc too much. which can add to pain and frustration. i use aromatherapy but lighting the candles, are sometimes difficult. thankfully my husband is here for me too. i end up too, struggling to use upper case, due to hand pain. the more i type the more difficult it gets. so when i drop, to lower case, it's because it gets sore. i have tried different voice packages, to be able to write better but they never work very well. society isn't very supportive of hand/arm disabilities either. there are all these ways of communicating for people with disabilities. every organisation, claims to be disability friendly, unless you have a hand disability and struggle to write. they still expect their forms to be filled in etc. but i will keep on fighting on. thanks very much again and my kindest wishes to you, for replying.

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I'm thinking maybe you should join a CMT group on Facebook, they give out heaps of info and lots of encouragement in some of those groups, (an American group which is good is CMT Stand by Me), anyway yes muscle wastage is normal for this disease, I was given ortho boots as a child, my mum has CMT and she wasn't as bad, I have a daughter with it, she has been worse than me, it affects everyone individually, I would say you need to get your AFOs adjusted and should see someone who deals with CMT, anyway hope that little bit helps..

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Thanks GrannyMaz. Much appreciated. x

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We have a Facebook group at facebook.com/groups/cmtuk

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Hi, WobbilyLou,

I'm so sorry you have such a horrid neighbour. CMT is quite enough to put up with without ignorant selfish people's attitudes. I have experienced plenty of thoughtlessness but not such actual hostility.

Now a bit of waffle from me....

I was so bad at PE/gym at school, that i actually dreaded the lessons, but simply couldn't figure out why I was so much worse than the second-worst person when there was nothing wrong with me. It wasn't until I was 40 and well used to tripping and falling, and getting breathless if i had to run for a bus - that I had an unofficial (and most unhelpful) diagnosis of CMT (very long story, yes I inherited it). I decided just to bury the whole thing under my psychological carpet and continue to carry on as "normal". At least my chosen career was sedentary, and I was self employed, at home. My husband had been a keen hill walker but modified his pace on our weekly country walks so I could keep up, and held my hand when anything involving balancing cropped up. I always wore wellies for these, as my feet seemed safer than in shoes, and maybe i did fall a bit less often.

When I was in my 60s and looking after him, and not managing physically to do what was needed, I excavated the CMT story from under the "carpet" and asked my GP to refer me to a neurologist - he took some persuading but eventually did refer me. I got a proper CMT diagnosis from a very thorough - and kind - neurologist and was sent off to "Orthotics" (a new word for me then).

Since then I graduated from wide shoes (which I bought by mail order from a small firm called Guat) with a raise inside the L one added by the orthotist - whose first observation was slightly unequal leg length. This was very destabilising as my ankle was pushed further up and was unsupported by the top of the shoe. The orthotist then gave me a succession of off the shelf ankle supports - fabric and velcro, then semi rigid Össur supports with long tangly laces, none of which were all that good. A more approachable orthotist took over and measured my feet for custom ankle boots; by then I had given up trying to buy commercially made footwear- it was always the wrong shape. He also cast my legs and feet for rigid plastic AFOs which were OK after a number of modifications. By the fourth pair of boots I now have some that really fit and are comfortable ! The soles get slightly wider towards the floor, and are slightly higher on the outside to counter my tendency to walk on the outer edges of my feet. The raise is incorporated into the L sole. I have no idea why they are based on a few written measurements and not on casts of my feet, but that is hardly for me to comment ...Since then I have only fallen on other people's wet slippery steps - when taking extra care not to.

Meanwhile I progressed from a walking pole to an elbow crutch, to two. I am unable to operate a manual wheelchair (weak hands and wrists) so have invested in a power chair for "long" walks over 50 yards. The sensation of whizzing along at speeds up to 4mph with the wind in my hair is exhilarating.

About exercising to regain lost muscle - I think all we can do is to exercise in moderation to retain such muscle as we still have. And keep paddling like mad, Like Lowther.

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Thank you Amanita. I do appreciate hearing your story. It is all making me feel less alone. You certainly appear to have coped, quite well Amanita but as you say what Lowther says, 'paddling like mad underneath'. You appear to just be adapting, as required. This is what I have been doing more or less, without even realising it. Though, I tried to fight hard against it. Though, I have had quite a hard time, getting my gp to recognise my symptoms. But I can imagine, it's not been easy for any of you. Some of you are very inspiring too. At the start, I would over do things and couldn't understand why I was so exhausted with simple things like, hoovering. I over heat easy too. So, sweat would pour down my face and into my eyes, so badly that I couldn't even see what I was doing. It got to the stage of, wearing gym clothes to do my housework and once it was done, have a shower. I would be physically exhausted after it all and would have to really rest. Getting back up, was difficult for long periods, afterwards. I used to run on the treadmill and couldn't understand why I felt, on my legs, as though I had a gym work out. My lower legs and feet just constantly hurt, until my quad muscles decided to rebel against me too. It became difficult just to sit, in the sitting position, due to this and my feet getting comfy. Even more difficult, when my knees started grinding and didn't want to be in the bent position for too long. My knee on my slighly worst side, decided to hyperextend. Which stopped me being able to walk outside. My husband pushed me in a wheelchair, to begin with but it was so emotional. I just worried that he wouldn't see me the same. I had been a bit vain before. I managed to get a smaller scooter that can nip, around the shops. This was when I realised, how unfair inequality can be. Cars on pavements etc and trying to get past. I would get so moody with drivers, doing this but I did feel a bit better, because I could get out and remain independent. I remember trying to get past a wide open car door, right across the pavement, while the guy was taking in his shopping. I closed the car door and shouted that pavements are for everyone. It felt good being out though but then, when my neighbour was a bit horrible I started questioning my own right to be on it. I had stopped going out at all, for a bit. I was moody a lot and went through, these whole body image, issues. I kept having to pull myself out of depression. I used my meditation and aromatherapy. My gp was horrendous. I had to fight for everything. My husband has been so amazing and does so much for me. Though, I know that I need to keep working that muscle. But I am no longer, quite so hard on myself now. I had some self pity, which never helped at all and made me feel a bit pathetic at times. Once I stopped fighting myself, it has got easier. Us humans can be so hard on ourselves at times. So, I plan to get a stool on wheels, to even keep my lower legs moving when I get too exhausted at home, to stand or walk. I am a bit more dropsy, in the kitchen. Many of my plates have chips on them now and not the type, to eat.lol I now joke about my legs, at times and say that I am like my grandaughter who is learning to walk. Only, I am going in reverse, as my walking reduces. I go back to my orthotist soon, so hopefully can get my feet and ankles a bit more comfortable, like you have. Thanks Amanita

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Hi wobbleylou I have had all sorts and tried many variations of insoles/braces/special moulds to try and give me comfort not all of them but worked,but this time of year my special insoles in my boots are fine,I wouldn't be able to put them in a shoe as they are quite big and awkward. It's trial and error looking for what makes your feet comfortable I can't stand or walk bare footed or wear slippers so my best option at the moment are Sketchers with memory insoles (heaven ) I use them around the house like slippers and there is a little loop to attach my brace for my dropped foot great!!!!the first item to put on when I get out of bed and the last item to take of at night.as for muscle wastage my hands and legs are getting worst,my hands especially so difficult to to the simplest job but keep your chin up there are people out there a lot worse off than me, good luck.

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Thanks Thel. It amazes me, how well many of you cope, with this horrendous condition. It inspires me, to stay strong. I do now see, how different this condition can be, with everyone. I like to think that maybe because I made it this far without being severe that maybe, mine isn't quite as bad, as what others endure. The research seems to suggest that it will usually get worse, after the age of 50. Maybe there always was a sense of denial, in that I considered my feet to be normal and would just laugh, if anyone said that I had odd shaped feet. I just got on with life, being clumsy and unable to walk on uneven ground. I just had got on with life. Keeping busy and keeping my legs moving. But 50 arrived and things got more difficult. The walks that I could do, just got less and less. Almost so slowly that it sort of crept up on me. I was fairly far gone by the time that I went for treatment but my gp acted like, it was all new or acute. All in my head. I just couldn't get him, to examine my legs. So, my joint issues are now 2 years old. My femur bone sticks out at the side, way, way more than my other one. I get groin pain and buttock/thigh pain. My knee hyperextends, grates and my knee cap seems to be missing on my right leg. It looks hollow compared to my other knee. I know that I have no ankle reflexes, when my neurologist checked. My arches have got higher the past couple of years and my orthotist always comments on how cold my feet are. I sometimes can never tell. I broke my 5th metatarsal from stumbling around 6 years ago. My consultant was concerned that it wouldn't heal. It took a long time. I never really regained the lost muscle on my foot. To make matters worse my feet always were really narrow. So the amount of coverage onthe ground that my feet have, is very little. Like walking only on my 1st and 5th metarsal balls, as well as my heel. I feel that constant pull, to stand on my ankles and the outer side of my foot. My feet feel like they are becoming more fixed. I am stretching all that I can and moving as much as I can. Perhaps I should stop walking in my barefeet too, because my brother has the same but his arches collapsed? It is sure good to be able to talk about all this, with others who understand. I have felt quite alone with it at times, because most people don't understand. I am awaiting my first orthopaedic appointment yet. My leg cramps have been horrendous but my neurologist did give me amytriptiline at night. I was so grateful to feel the pain lessen with it. I just never thought that I would have, mobility issues. But I guess nobody does. I realise how much I took it for granted but I am lucky to have had a full life on my legs, until now. I think that I have been going through a form of grieving, for what once was. I feel that now that I am being heard, by doctors that there is light at the end of the tunnel. I think more needs to be done to make doctors, aware of this condition. It should be included, in all their training. There should be places were we can go, when our doctors aren't listening. Thanks for sharing Thel. x

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