Feeling Devestated and Low

[Eddie84]

I was diagnosed with CMT last week and I'm not coping well it had deteriorated rapidly over the last year and I now can't walk more then 250 meters without the drop foot becoming so bad I cant want any further people stare at me all the time and I've backed out of most social functions and doing things with my friends as the humiliation has taken over. I'm angry as before the diagnosis I always thought physio would make me relatively normal again but now I know that's not the case and in fact I could get worse which will involve an electric scooter etc I have had custom made othotics and put them in my trainers but they seem to make the foot slap the floor harder like bricks on my feet. I am also finding splints very difficult to use. I dont even want to leave the house at this stage everything is so frightening. I'm 34 single and overwhelmed by all this. Can someone please give me some advice or helpful tips? 😞

[John1945]

Hello to Eddie84,

Yes, I understand, all your fellow sufferers of Cmt (me included) in the UK have to live with the daily frustrations of this neurological disease, including 'foot-drop' / 'muscle-wasting', / 'balance disorder', / 'clawing of hands & fingers', / loss of fine 'finger-dexterity' / difficulties in rising & walking / pain due to joint(s) deformity, and lower limbs weakness, etc-etc:

It is a medical fact, that many NHS professionals (Doctors - Nurses - GP's) may never see one single case of Cmt during their career(s), leading to sufferers feeling let-down':

My father had two "Club-Feet" which in turn I inherited this Gene-Mutation, and also passed it on to my children, and most sadly my two grandsons:

Today, many orthopaedic surgeons may offer you procedures to assist with your body's deformities, such as muscle/tendon re-positioning, bone arthrodesis, (fusing bones together), straighten curling toes, and tendon stretching:

Sadly, there is no cure (at this time) for Cmt Disease sufferers:

Please remember that any surgery is a "trade-off" ? Yes ! you may gain something ? However ! you may also lose something:

Cmt disease is a Neurological disease, in which your body's longest nerves are defective, entirely due to the myelin sheathing which wraps around these nerves containing the electrical sensory signal's from the muscle groups to your brain: These signals are very slow as your myelin sheathing LEAKS: The brain interprets this information, and it sends the weakened instruction signals back to your various muscle group, via your motor nerves: Over the years muscles will waste due to the lack of a "Stimulating/Strong electrical signal being received at your muscles:

Always consider carefully any decision before undertaking surgery, as your muscles will still continue to "waste-away", albeit ever so slowly, as your defective nerve sheathing(s), are, and will be with you during your remaining lifespan:

Best of health, to you,

John (Glasgow)

[Eddie84 in reply to John1945]

Thank u so much for your reply John I'm feeling quite lost atm and your insight is extremely helpful I'm hoping moving forward an AFO or something similar could give me a chance of more mobility still at the processing phase now but im trying my best not to let it take me over. Thank u for replying and sharing with me 😊

[strawberryshortcake in reply to Eddie84]

Hi every time I have had an operation, my cmt has worsened. I don’t know what causes this, maybe the anaesthetic does it, but it’s definitely does something.

[Amanita]

Hi, Eddie84,

A CMT diagnosis is a lot to take in and get used to, so no wonder you are finding it hard to cope. I am sorry it is affecting you so badly when you are only 34.

Also coping alone with CMT is a huge challenge, as I well know, and admitting in public that you have a disability is certainly not easy especially at first. I hope that in time you will feel able to see your friends again and that they will understand you are still the same person in spite of your physical problems (which are after all not your fault) and accept you as you are now. Is there just one of them you can confide in? Do you have any relatives who can help with some moral support? At least for the latter you have the folk here; we have been through it and understand.

If your footwear is so unsatisfactory can you get referred to an orthotist - or ask to see him/her again and explain why it is not working for you. I had to keep going back, and finally saw a different man. I now have clunky NHS boots and AFOs (splints) which are usually fairly comfy and a least sort out the foot-drop problem. I have never been able to wear pretty shoes and am quite a lot older than you so maybe that was easier for me to get used to. Some people do have to go back to their orthotist a number of times to try to get something that works for them.

Do you drive? If you are in the UK, you will not be pleased with this but you really do need to tell the DVLA about your diagnosis, as CMT might affect your driving - in the future if not at the moment. You may also benefit from a medical driving assessment; I think your neurologist can refer you for that. This can be beneficial in recommending modifications to your technique or your car.

Other people here can advise you about applying for PIP /DLA if you have not already done so.

I hope this will help a bit - even if only to let you know you are not alone here.

[Eddie84 in reply to Amanita]

Amanita there is so much advice in your reply I really appreciate it I'm an Irish girl who moved to Australia 6 years ago my sister is also here but the rest of my family are at home I've gone through alot of this on my own but I have now turned to my sister for some support. I just really wasnt expecting it to be this bad or get this bad but I am going to try my best to utilise any resources available to me and am not against AFOs etc if it allows me to do more things I feel really grounded as I fear leaving the house as it's got so bad I find it hard to enjoy social things due to embarrassment and humiliation but I'm willing to try. Thank u again x

[cyprus9]

Hi It is a shock..but for me it was good to realise why I kept falling over. Swimming and cycling are a pleasure for me. I do pilates slowly and have had operations on both feet but walk OK..with a limp..stay strong

[Eddie84 in reply to cyprus9]

Thank u so much for ur reply Cyprus I'm really glad I looked hard and found this page x

[Fran090]

Hello Eddie84

I'm so sorry to read this but at the same time glad you have found us all on here, reading back though post has helped me a lot to understand my Husband's condition and that we are not alone and now neither are you, it's a lot to take in at first so take your time and remember it's ok to not be ok about it all, I think we have probably all got angry about this condition and I know I have cried many tears and I can't believe I'm alone there. I think the important thing for you just now is to take some time to grieve for the loss of the life you thought you would have and then when your ready start a new chapter in your life, it will be difficult that's for sure BUT it doesn't have to be all bad, when my husband was diagnosed back in 2009 our world fell apart but slowly we have built our lives back up and are now most the time managing the pain and keeping him moving, we are lucky cause we have each other and when he is having a bad day he has me to keep him going, if you don't have a close friend who can help keep you going please please post on here and we will all help you, stay strong and just take one day at a time x x

[Eddie84 in reply to Fran090]

Fran that's a very good way of describing it I am grieving I daydream of when I used to be able to walk and do so many things and I breakdown in floods of tears I'm so emotional its unreal I'm hurt angry and my self confidence is gone I'd love someday to meet a partner that is as supportive and loving as u seem to ur husband hes lucky to have u x

[Enzowilldoit]

Hi eddie84...i truly feel your pain and discouragement. Finding this site has helped me alot because i see others in the same boat. It helps not to feel alone. Am now 70 and am so greatful for electric wheelchair as it has opened up a new arena for me to occasionally get out. I had isolated myself...try to use that possibility in your thinking to re-capture a little more. You must have possibility thinking..lol. Break everything down into smaller workable parts with a goal in mind. Warm water helps me with pain. For many years i could do therapy in a pool. Now in a spa at home. Therapy can prolong what use your body still has but for me it has been a slow path of trying things...many you have mentionned..but in the end just having to readjust constantly to what life is giving me this month..or this week. So it becomes mental..be strong...retain what you can in movement and strength..re-group for the positive way you can make for yourself. Have the best day possible each day. It has been a 4 decade long journey for me. Ups and downs, but not impossible. Just different than we might have planned. Grab onto any tiny blessing and build on it....with best and caring wishes i write you.

[Eddie84 in reply to Enzowilldoit]

Wow thank u so much such good advice this page is truly so amazing I am so grateful I will try my best to follow by your example I need to be more thankful for the good things I still have it life and try to use the little bit of mobility I have left to try to enjoy what I can x

[Tewster]

Hi there, i felt the same,had ankle fusion too,the best thing that i use is a boxia drop foot support,awsum,it helps to lift your foot while walking,had mine while undergoing treatment but they are on evey,quit expensive but very very good,would not go out know with it on so try it,hope it makes you feel a little better👍

[Eddie84 in reply to Tewster]

Thanks so much Tewy I will definately lo into that my foot drop gets worse by the month so yo help with that I'm anyway would be amazing x

[BBnz]

Eddie.

34... that sucks mate. I’m a little bit older than you and was diagnosed in2011 - initially I went the exact same path as you. (Incidentally, I live in NZ though originally a Geordie-and there is absolutely no support whatsoever here for this condition other than a parking card!!). I totally get what you’re feeling-pretty crap - and robbed. But, allow yourself those feelings- for a wee while- it’s normal. I’m in a wheelchair now- but i REFUSE to stop living my life the way I want to!! And Eddie, when your head is straight, I urge you to do the same. I still struggle and fret about going to new places, (steps and stuff still freak me out) but, life is life. You’re the same inside- your valid and valued- don’t forget that petal. I’m wondering if you’re working- and what, if any the impacts might be ? I’d love to help and support you through this.... take care Bev

[Eddie84]

Ah Bev I'm welling up here I'm am Irish girl living in Australia. I have had some good support but if I'm honest I've been a bit dismissive as I'm angry and exactly how u described it I feel robbed of what could of been my life 😞 I'm really struggling to except this my life has dramatically changed already and may get harder and im in shock. U seem to have such a positive outlook despite it all I aspire to be like u. I am seriously considering an electric scooter even though those words had me bent over a toilet bowl a week ago when it started to sink in. I'm working full time as an Executive Assistant and my boss is amazing she has worked alot of things around me and is extremely supportive for all my apts and my lack of mobility I am extremely lucky I cant imagine getting a job from scratch with the way I am now and I would understand someone elses hesitation in employing someone with such limitations. My anxiety to getting try to do a grocery shop is out of this world I've have many panic attacks recently because I barely made it back to my car and thats with being parked in a close disabled bay outside the door of the shop I'm really struggling. My day to day feels like it's coming to an end and walls are closing in. Thank u so much u have no idea what it means to me to get advice from others I've felt so lost stuck in my room and overthinking x

[BBnz in reply to Eddie84]

Omg- I’m in Aussie right now! Unfortunately in Perth airport heading home to NZ! Look girl, find me on FB Bev Ball - Cambridge NZ and send me a request- then we can pm each other! I really want to support you Eddie and I really truly understand exactly what you’re going through- but trust me- you’re going to be fine- lead a different life - but fine! I promise you! Xxx Bev

[Messianicmex]

Hi Eddie my name is Adolfo one thing I will tell you dont give up!!!! Fight back ... find, study, research.... for the best afo orthotist, ive even made my own carbon fiber afos..... just don't give up your young.... My Faith in JESUS helps me more than anyone or anything because he wont let me quit He strengthens me everday.

[Coffeeman]

Hi Eddie,

I understand what you're experiencing. I'll be the last to give you advice. I can only tell you how I'm dealing with it. I've had CMT for over 50 years. I also tend to isolate myself but I'm trying not to. It's not fair to myself or the people I love. I used to keep my condition a mystery to my coworkers and friends but I learned that was a mistake. I found everyone very supportive after I opened up. I wish that I could say something will make my condition better but I haven't found any answers. I started going to physical therapy. I have more pain from the exercises but haven't noticed improvements. People around me have noticed change so hopefully its slowly helping. There's most likely a lot of people that disagree with my opinions but I've always been somewhat in denial thinking that someday all of this will go away. I fight this crap every day hoping I'll beat it.

[beachwine]

Oh Eddie, I am sorry you are feeling low & sad. CMT is a disease I wouldn't wish on anyone. I'll spare you all the details, but prior to my diagnosis. I lived in bed for about 2 years. My sweet husband brought my meals to me. I was so depressed I mostly lived on protein drinks like you woul get in a hospital. When I finally had all the tests, including DNA & was being seen by a neurologist at a state university. The school/hospital is a center of excellence for CMT. It was a hallelujah day. Being told you have rare disease, no cure & basically no treatment. Isn't something to celebrate, but for me I finally had an answer. I wasn't crazy. It even explained my klutzy childhood & teen years. I was ordered AFOs, custom orthotics & physical therapy. I left that appointment with a different attitude. That black cloud of depression left. I Google a lot so I read everything on CMT. Now I only use my bed for night time sleeping. I have good days & bad days but I'm trying hard each day. The worst thing is I can no longer drive. I miss that independence. Keep smiling. It makes people wonder what you're up to!

[worried12363]

HI Eddie

hear your pain having been diagnosed when i was 1 due to family history and going through many operations through my teens and early 20s, im now at the point when there is nothing more they can do operation wise and have bad bone deformity in both ankles making shoes and trainers a hard fit, all i can say at 33 now is you really do just need to accept it for what it is and dont stop, dont let it stop you from going out when you can who cares what people think, its been easier for me as i dont know any different in life but i dont let it stop me getting to work and or enjoying time with my small children, you just have to adjust, ive learnt to enjoy my remaining years on my feet as ive been told there ver limited now and a wheelchair most of the time will come early for me.

my mindset now is it is what it is as hard as it is to deal with its not going to go away so the sooner you can come to peace with it the better for yourself,

my personal option is really think about any operation you are offered as thats my regret too many too soon when i was young has led to huge ankles and kid size feet with bad arthritis

[Ladywonder]

Hey Eddie 84

Does anyone else in your family have CMT also if your a drinker alcohol is not that great for you. Seems to worsen symptoms at times. Foot wear I wear new balance shoes only leather they seem to have the best arch for me try to find a light weight shoe so it doesn't pull on your foot. If that makes sense to you. I was diagnosed when 17 so I have grown into it you could say but it is still so frustrating I can be walking and all of a sudden be on the ground . Its life and i carry on I'm now 52 so its will always frustrate you just try to pick your feet up higher etc. You will get the hang of it . Keep living life and your friends will understand. Just laugh it off nothing else you can do. Ps our doctors in canada don't know much about it and really dont seem to try to suggest anything to help I have had no corrective surgeries which I dont think I would do anyways risk factors are higher for us I did have to get a new hip because of arthritis and surgeon was worried because of CMT but all worked out .

[gunner]

I do understand your concerns I was the same always considered myself as fairly trendy and wanting to look good. And when I had to have orthotics I wouldn't wear them to start with. But slowly I started to and I don't really go anywhere anymore and don't even see my best mate of over 20 yrs,I think it's cos I couldn't do all the things we used to do and he obviously had difficulty understanding my problems. So he just cut me off and it was difficult bcos I as friends with all his family knowing his kids and wife for just as long. I miss them all but like they say nothing in life is for ever and have just had to get on with it. Anyway on the subject of what you look like I would say to you, that you need to accept and own what you have accept that you have a disability and people really don't care what you wear just look around you what others look like there are many many of us. I'm sure you didn't go out and judge others. So try not to be worried about that as we can't help it. This subject ie CMT never ends but I hope this is of some help!

[oliverdeb]

Hi Eddie , i will say it very short go to the Gym !!!! start training Garantee you will gain strength and improve mood that is what i did I go 5days a week for 1hr a time it changed my life feel better stronger slowly but surely . its a life commitment to keep well . it keeps CMT under control . Do it my friend

[Eddie84 in reply to oliverdeb]

Thanks Oliver I feel very foolish trying to do any exercise it's very difficult but I should look into what I can do x

[tymtravler]

Hi Eddie. Like you I have felt very self conscious about foot slap. I pick up a pair of AFO's on Monday> they have springs on the sides that supposedly lift the forefoot to circumvent not having the muscle to lift it. I don't remember the brand but I'll let you know if they work.

[Eddie84 in reply to tymtravler]

Thank u so much x