Living with CMT

Hi there, I was diagnosed a year ago with CMT, I struggle with walking, I can no longer wear flip flops as I cant feel them on my feet, both feet and legs very numb right up to my knees. I have pain everywhere, Dr has had to increase my pain meds, I don't sleep well at night, I struggle to climb stairs. But on the upside I hold down 2 jobs even though I get tired very quickly. I try not to let this disease put a hamper on my life but sometimes its hard not to. I am only 42 years old, and Drs reckon that I have had this disease my whole life, my muscles on my legs are wasting away as well. Does anyone else have this problem? I have the "inverted champagne bottle" look on my lower legs aswell.

22 Replies

  • Hi, Chriren,

    I'm sorry you are having such a rotten time with your CMT, especially having to put up with so much pain when you are only 42.

    Well done keeping two jobs going, and trying to maintain a positive outlook.

    All of us have different experiences with our CMT. I was always worse then bad at games and gym at school and actually dreaded the sessions. I have always had relatively poor balance, weak wrists and a degree of foot drop for as long as I can remember and been prone to falling and getting tired easily. but have mercifully not had to put up with neuro-pain.

    I had an unofficial diagnosis of CMT out of the blue from a most unhelpful neurologist when i was 40 (long story) and buried the whole beastly thing under my psychological carpet, until decades later when I was really struggling and needed some help. I have always done sedentary work from home, which enabled me to continue a normal-ish life.

    I do hope the medical people you are seeing will be helpful, and that your family/friends are being supportive.

  • Hi Chiriren, I have similar to you, I gave up a job I loved as a social worker cos of all the health problems and tiredness. I think at least it meant I could write the books I always wanted too. When one door closes another opens, at least with the help of technology, I couldn't write if I had to hold a pen. It does get you down at times though.

  • Hi there butty,your not alone mate,I'm 47 year old,and too was diagnosed last year,it's a sad desease,but I too like you am trying to not let it get me down,I had an operation on my left ankle 2 months ago,as my left is worse than my right foot,had 2 toes straitened and my ankle reset straight which has now got 3 screws in,just started walking with a boot with weight assisted,doing OK as I think it will make my life better in the long run,don't mean to make you down,please it's not intentional as when looked at people's comments it really made me depressed as what is to come,I love the gym,and this desease is not going to put me down,going to love life has best as I can,so don't know what else to say but hang on there mate,if in a lot of pain,maybe try some canabis oil (hemp oil)as this might ease the pain on a daily basis,haven't tried it myself,but researched it a lot,this is the road I will take if or when it worsens,chin up my friend...

  • Hi Chi rien, read your Post and other replies. Seems odd to me that none of you have mentioned ever having been given antibiotics specifically for it! CMT as we should all know is a bone disease - my research into it says it a curable disease with help of AB's.

    And of course any meds we take, especially AB's - alcohol should not be drunk while on a course of them. Plus it's also worth checking out the meds taken on Drugs or, to make sure they are compatible and that we don't end up od'ing on the same component ingredient contained in 2 or different meds.

  • hi i cant understand how you got this information. CMT is a nerve problem no such thing as antibiotics and there is no cure, are you smoking too much weed ?

  • Nope Oliverdeb - I don't & never have touched the stuff! :-) I smoke ordinary cigarettes), as of 3 yrs ago!

    My 1st of 3 r foot ops was when I was 14, a few years after the bone deformity in that foot had started being at boarding school for 7 of those years, we had a healthy diet way back then and I'm 69 now.

    Yes I know all about sclerosing of the nerve sheath and how pain signals are sent via neurotransmitters/receptors to/from the Brain. There is also a connection between Thyroid problems and nerve sclerosing according to Thyroid UK.

    More women than men have Thyroid problems - I wonder if more men ( as boys) suffered from tonsillitis, as my eldest son did - resulting in removal of his tonsils age 16, after having it for 8 consecutive years. My youngest son didn't have the problems my eldest one did no does with some joint problems.

    To best of my knowledge, Drs have always said the tonsils don't do anything so it doesn't matter if they are removed! However perhaps it does! Perhaps both they and the thyroid worked in conjunction with the pituitary or other adrenal glands.

    Yes, i know I'm delving into unchartered waters here but we are the "many sufferers" not the " medical scientists" - where conditions and symptoms are so often treated separately but not as related causes of a condition, also why different meds can often counteract each other.

    I've put a lot of my own personal research and time into my my own health from birth since having a spontaneous aneurysm and brain haemorrhage in Mar 2013, given I'd had absolutely no indication or symptoms before it happened. Also, being retired I had the time and interest when I started reading or hearing of so many similiar symptoms/side effects for different and/or same conditions.

    (Im not medically qualified, but have always had an interest in Human Biology since studying it at school. I also believe in thinking and looking 'outside the box' for answers/ solutions no matter what the subject.

    It's not unless or until many conditions are re-researched from different medical viewpoints, by medical researchers, rather than long time accepted ones, that The Doctors will take better notice of and listen to their patients, diagnosing and prescribing correctly on advice from the Various accepted health systems, wherever they may be located.

    Oliver deb you may find it an odd answer - but then CMT is it's an odd condition that hardly anyone had heard of it here. When I started using HU 2.5/3 yrs ago

    CMT wasn't even a Condition listed with its own Charity or Support Forum. It's a more recent arrival on Health Unlocked which is a British based Website not American.

  • Sambs, you are an amazing woman , but now you really spun me out i am sooooooo confused ha ha ! god bless you

  • Thanks for compliment oliverdeb im ALSO very confused by what's going on in my body - and brain/mind! Hope I'm not totally Gaga yet but am determined to see health professionals "better" educated about their patients than they currently are and I'll make a lot of noise doing so if I have to, on places like HU.

    My first research on CMT there was a reference to Africa - one of my blood tests had queried if my recent heritage was Afro/Caribbean- that got me thinking also. My dad was a ww2 RAF Pilot stationed for a while in Rhodesia. I started looking at Rhodesia via wiki - lo and behold there is an African hunting dog, called a Rhodesian Ridgeback, the breed going back centuries. They also currently get Thyroid Problems, and if you look at toes, joints also are 'slightly pyramid shaped' - as mine are now on my left foot. 1st joints near foot points upwards - 2nd joints near bottom of toe points downwards. A pair of pyramid shapes.

    Rhodesian Ridgeback were used to hunt wild boar way back when. We're military personnel fed any cooked boar meat to supplement war time rations out there. Did the RR dogs eat it raw year in and year out before being the world wide domesticated dogs they are now.? Boars also have a pronounced v spine with a spiky mane of hair running along top of it! So I've looked at historical connections as well as the potential for health ones.

    Just a trail of information and any clues that rang bells with me. I always discounted one I felt were not relevant - call it gut instinct personal research. Also why did a French pharmacist, on looking at one of the many large blood test result papers I had tell me not to eat Pork in the here and now. I've never been a lover of roast pork, but bacon and cooked ham yes.

    I also once a few years ago, while living in a mountainous part of France cooked (not very well) some wild boar a local neighbour who hunted them, had given me. Is there a connection, I can't say positively but if I also inherited dodgy DNA or something genetically from my dad, who is to say if I'm right or not. As I said, thinking outside the box! Did eating that for 1st time I'm aware of start off my blood disorder diagnosed 3 mths before the brain haemorrhage

    In today's London Times there is an article saying that scientists ARE starting by using some 'crazy theories' they have to re-look at and research farther, some of the more obscure conditions/symptoms people have. Good on them is what I say. Perhaps they follow up some of my wild ideas or not of course! :-)

    As ever with medical research though it all takes money and time! But they "may" find a way to stop sclerosing of the veins and nerves in humans one day or at least slow down the progress of CMT - a truly debilitating condition.

    Inter-related health problems for each individual, are like a jigsaw, that was tipped out of the box - and then all the pieces have to be put back agains in their correct places, to make it whole!

  • clever lady . i cant say i agree , but you never know when it comes to DNA it takes a lot of research to find and resolve . i am no Doctor , so i dont like to make assumptions, what i do is gather information and make my own conclusions. Doctors are sometimes right and sometimes wrong . all i know is what i feel and my limitations living with CMT . i only have one regret i wish i knew i had CMT when i was younger so it would have made sense why i could not do many physical tasks. and why i always had pain . and to make things worst i had a terrible child hood with lousy parents . thats life !

  • Do you have CMT as far as I'm aware there is no cure nor is it a bone disease I was diagnosed 30 years ago and am now 50 I had a smart family physician as there are still many that have no clue I do not see a neurologist as not one available I live a good life HD hip replaced this year due to arthritis little longer getting back from it but... foot drop yes pain yes tired yes but don't dwell on it continues is as you are I take asprin when I'm in pain seems to help more than anything else good luck

  • Hi there buddy,

    I too have CMT. I was diagnosed at around 12. I'm now 56. I understand what your going through. For me some days are really bad and some are bearable. The best thing that I think you can do for yourself is to maintain a healthy lifestyle - plenty of restful sleep, a healthy diet, and weight bearing exercise. also beware of what others tell you. Do your own research. CMT is not a bone disease. It's a neuromuscular disorder. I would not take antibiotics or any other medication without the direction of your Dr. I wish you well.

  • Hi Chriren,

    G'day to you. You are an inspiration to us all - holding down 2 jobs. I gave up a job I loved as it was very active and I am no longer. I am 48 and have had CMT forever. I could never wear flip flops as I need ankle support from my shoes due to foot deformities. I also have champagne flute glass legs due to lack of muscle & struggle to walk upstairs. I get burning feet n pins n needles in my feet. On medication for it. I also feel my feet fusing together. I get alot of lower back pain - its annoying as its only muscular n positional n goes away if I sit down and rock my back. I have 2 numb fingertips on my left hand n both hands go numb frequently. I was so agile n capable 9 months ago and now I am falling apart.

    But this is life and this is how it is.

    Merry Christmas from Jealous One in Australia

  • Hi everyone, thanks for all your replies here, I am glad I am not alone in this. Jealous one, I also have ankle braces/ orthotics but can't wear them with the majority of my shoes / boots. Like you I also have foot deformities and slight scoliosis , I always came last in school sports. athletics etc (wasn't through a lack of trying ).

    it's really hard making my family understand this disease as they look at me and see nothing except for the few dents in my legs from muscle wastage , ( do any of you have muscle wastage )

    recently I have had trouble breathing. so today I go for blood tests and chest xrays. I am literally a walking science project lol. Have a good day all you wonderful people x

  • Hi Chriren,

    Jealous One here. Yes I have muscle wastage in my lower legs and thighs - only noticable to me - particularly my shins. My legs go straight up and down with no muscle definition - like bike riders have calf definition .

    My thighs are all dimpled as the muscle goes but the fat remains - not a pretty sight. But here in Brisbane Australia, the weather is so humid you have to wear little shorts - at least my husband likes them - lol

    I have slight scoliosis - maybe the reason for my lower back pain - such is life - and I get short of breath on exertion - it goes away fortunately.

    My family see nothing wrong with me, just funny shaped feet and legs - so I suck it up and get on with life. If I get upset, so do people around me - and I don't want to be the cause of their sadness.

    One thing I notice - alot of CMT sufferers have surgery to make life more comfortable for them. Is surgery a good idea?, as there's no guarantee any surgery will work and are they better off? Do you know of anyone who's had surgery?

    Anyway, good luck with all your tests and I hope all is good for you - keep smiling

    Jealous One

  • All of using dare to say have muscle wastage as one person said doing a little weight exceeding is a great way to maintain what you have I learned this recently and wish I was told this 30 years ago my balance is also bad like most I stink at sports can hear myself walk down a hallway as my foot drops don't notice it till your somewhere in public hospital a hall or something like that which seems to echo your flapping gate Anyways good luck keep on doing what your doing not every problem is because of CMT and becareful what meds you take as some have adverse effects and worsen CMT. Why did it take so long for you to know you have CMT and does anyone else in your family have it

  • well the fact you hold two jobs makes you a hero , good on you , i am 53 years old with CMT i can hardly walk 100 mt because have pain every were and now my hands started to go numb , not happy at all , just gone on retirement 3 months ago . i just have to take it easy , at 42 i still had some energy left but i always suffered , all i can say to you is to keep positive and do your best while you can , dont forget this is a progressive disease ,it gets worst and it effects people in different ways. good luck

  • Hi yes I have the same problems i struggle to walk up/down stairs etc my right foot is worse than my left I had a fair few Opps on my feet and now I have to have my right one off which is my decision as after 3 fusion it hasn't worked, and I get no help off pip/dla and just a few weeks ago I found out it's in my hands as well.

  • U have had it all your life as cmt is hireditary past on from parents and is a faulty gene. Like u I found out around 40yrs old. But always felt something was wrong and at one stage I thought I had cancer. Until by chance after a knee op It got noticed by my physio I got tested and confirmed cmt 1a. I'm 48 now. Always do as much as u can I was told cos if u don't use it u will lose it. Easier said than done I know but how they think I can hold down a ft job just frustrates me. It's all I can do to try staying independent and get thru each day. Like others have said here day by day. Sometimes I can't get up till late and most of the time I can't bring myself to go out although people who new me in the past said I was a mentally strong person. Mmm maybe I do my best but it can go against you cos u can end up by yourself. Tafn

  • My husband's legs look like that, they have since I met him over 45 years ago, he was 25 and I was 15. He was diagnosed with polio when he was a little boy, many years later the military doctors diagnosed it as CMT.

  • OMGOSH YES CMT has not only destroyed my legs, but has also destroyed my upper extremities like my left side is my weakest.. I have severe, extreme pain in my neck, that goes up into my jaw, then into my eyes. My eyes got tested for severe dry but because the inflammation in my face causes the severe dry. It also travels down into my left shoulder blade which is winged off and up & is hanging which is pulling down everything of that left side. I have pain that goes down into my arm and I live my life in extreme pain. There is a new medication that just came out if you have CMT1 the Muscular Dystrophy Association told me about me.

  • Morning everyone, Chriren here. Finally going to see my neurologist on the 10th April (that was the earliest they could get me in) so will see what he has to say as recently I went to my GP and after discussing all my weird and wonderful things going on, he has said that it sounds like my disease is progressing a bit too quickly for his liking. I have in the last 2 months started "twitching" on my left side, my hands twitch and so does my foot, drives my husband batty, but I don't realise that it is happening until he tells me to stop it. Anyone else have this going on too?

  • An opportunity, just by chance to return to Chirien's post. So having re-read a lot of the replies to him, also to one of mine on here, seems too good an opportunity to miss to give an update on my CMT and 'other related conditions'.

    I'm now back living in UK for 4 mths, not quite settled in yet to a rental property here and registered with local medical centre, to whom I've given a list of diagnosed conditions when living in France and 3 R foot operations over the years all done here in UK. I've also referred to CMT, referring to pictures of feet shape which exactly match mine and has for several years.

    1st - sadly though, currently the GP here had decided I just have arthritis in my hand/feet joints - :-( although he did arrange for them to be x-rayed)

    2 - I then was sent an appointment with the Orthopaedic Pain Management Clinic for 30 March - suddenly brought forward to 9 Feb to see an Orthopaedic Surgeon. On no I thought - I refuse now at almost age 70 to go through another 3 foot ops on L foot this time. Fortunately for me, my feet were xrayed again, this time standing, not lying on a bed, (as 1st ones were), just before the consultation.

    3- on looking at X-rays and my feet, the Surgeon has said he won't operate (much to my relief) and has said I should see a podiatrist in order to have shoes made to measure, to accommodate the extra feet width and upward pointing joints. He initially had suggested inserts but when I told him I'd been there done that with r foot which hadn't helped or worked resulting in the 3rd operation at age 55 when a rod and plate were surgically inserted.

    4 - the most important point to all this I think is that my bone deformity started slowly at a young age. When a baby I had a TB infected gland removed from my neck - this operation may have disrupted my Thyroid and Adrenal Glands. I was diagnosed as being Hypothyroid in 2003.

    Have any of you had your Tonsils or adenoids removed? Could this also be the answer for you. CMT has to start with something or for some reason, even if genetic one. I do believe I may have a missing Gene.

    Whilst living in France from 2008 till 4 months ago, I was also variously diagnosed with a unspecified Blood Disorder. However my GP there said after a Thyroid blood test I was "borderline" Type 2 Diabetic and put me on Metformin - which medication counteracted with the Levothyroxine, resulting with a swollen spleen, depleted white cell count and enargued red blood cells. Side effects of which were mainly muscle loss and tiredness, while the bone deformity and joint pains started up again - this time in my hands and left foot! From the Thyroid UK website I have also learnt about sclerosing of the nerve myelin sheath, very painful around the joints, to which I can now add my hips, r knee and bones in my bottom. The soles of my feet are also very painful when walking a lot. I do what I can in order to keep the circulation going.

    Added to the list of Thyroid & CMT, is Vitiligo, (skin pigment disappeared, 2014/5. I had a spontaneous aneurysm and brain haemorrhage in 2013, 4 months after blood disorder diagnosed. 2 separated timewise bone marrow tests couldn't even enable the 2 Haematologists to give an accurate diagnosis! ALL doctors were aware I'd had 3 separate foot operations for continued deformity.

    I am White Caucasian, but my arms and feet specifically lost their natural skin tone hence the Vitiligo. One french doctor, I saw voluntarily, on a routine health of the nation scheme running in our area, said I have Thrombocytopenia!

    So with 2 diagnosed Auto Immune conditions TB and Hashimoto's (autoimmune Thyroidism) added to above Vitiligo and Thrombocytopenia that was what made me decide to stop taking all meds several months later after I'd done my own 'Health History from birth' research. It certainly seems to have helped with some of the various condition side-effect symptoms like, brain fog and fatigue? I've had several,MRI's, FBC's since 2012 Blood Disorder diagnosis, plus the effects of the Brain Injury, and they bear no relation to the ongoing de-myelination round my joints.

    Yes I've lost weight anyway, mainly through loss of appetite and now currently find I can't lift anything heavy, like a filled kettle,or saucepan. I have no muscle strength to grip or undo things like jars and water bottles. When I try, the pain in the finger joints surges.

    So yes I'm convinced it all started with the Neck op, and the subsequent auto immune thyroiditis does not help. For the last 2 days I didn't take my Levothyroxine and find my fingers feeling somewhat stronger and more pliable. I also feel better overall in myself, not that I can say I have generally felt ill over the years, Just get more joint pain and deformity. Yes I've also had several infections over more recent years, and despite one reply here saying Antibiotics don't help CMT, I certainly know I felt my feet and toe joints were less painful overall whilst on AB's a couple of times for the infections.

    The fingers are now where the bone deformity is getting more noticeable and painful along with - hence I presume, my GP deciding I only have arthritis :-( numbness in my little fingers, plus pain in my groin, especially if I cough, but specifically if going down steps because knee has to bend at some point. Finally the last Specialist I saw in August '16 in France was a Haematologist and he said he thought the Thyroid was connected to my health conditions!

    So ask yourselves the same questions regarding your own health history from birth.

    Some of you may not want to know, but I did - which at least relieves the unhelpful stress of ongoing health problems, because I can work out what has related to what throughout my life and I now look forward to wearing asap, made to measure shoes, with enough room for softer comfortable sheepskin inserts, that will not press down on my upraised toe joints and allow room for the ever expanding feet width, easing the pain from joint nerve sclerosis. I also do take care where possible with my diet, ensuring I have sufficient of the right vits, minerals and proteins.

    My current research has concentrated on 2 specific proteins contained in cows milk - something I've drunk in quantity all my life, through cereal breakfasts and of course it's a binding/mixing ingredient in most flour containing recipes, especially wheat flour.

    Proteins play a part in sclerosis and bind to nerves or the myelin sheath, according to much of the reading I've seen on Thyroid UK. Worth a thought I'd say.

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