Anxious: I have had CMT now for a... - Charcot-Marie-Too...

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Anxious

DD1234 profile image
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I have had CMT now for a number of years now had so much surgery to my feet i am now in my 40s and thought i was getting to accept my condition but recently i have been really struggling i am on pain killers for the pain but find myself breaking down when on my own and feel really low.When i say on my own i have to show a brave face around my wife and children but deep down i'm feeling so low. Is this due to a later thing that goes on with CMT as i have not felt like this for a long time 10yrs plus. I have nothing stressful going on with my life i have a great wife beautiful kids good job but why am i suffering more now than along time ago when i was going through major surgery?

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DD1234
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Lizzieblack profile image
Lizzieblack

Hi, I also have CMT, just turned 40 and have had several surgeries in my 20’s. I am not sure what I can say to help except I hear you. It does sound like perhaps you have some depression perhaps, or just get down about your condition as you get older. I can’t obviously say at all what is going on in your heart but I do know that perhaps you should share this difficult time with your wife if you haven’t already. Sometimes it is helpful to talk about it and it’s part of being intimate and close to someone. If it was me I’d want to support my husband and see his vulnerability in this.

The pain can be hard to deal with at times and it can be a lonely journey if you don’t talk to others. I do understand though cause we get used to getting on with things even when it’s hard. Nothing I have written may be of use at all, but I just wanted to reply and say I hear you and I understand.

I will also say, I have struggled with depression and anxiety myself and neurological conditions can be tied in with these things. But to be honest if your pain is increasing it makes sense that it gets you down. I really encourage you to share your experience though with your wife. I find when I share my hardest feelings around this disorder it does help me feel less alone.

DD1234 profile image
DD1234 in reply to Lizzieblack

Thankyou for your kind words and consideration.

John1945 profile image
John1945

Hello to DD1234...... I felt that I must reply, and to share my experiences with CMT Type1A: Yes this most debilitating of Neurological Diseases (yes it IS a disease) not a syndrome, or condition etc: You most certainly would have been born with this gene mutation, inherited from a parent, or even a grandparent ( yes-it can skip a generation):

At present no cure is available, so we all have no option but to "Accept & Manage" Cmt to the best of our abilities: It is a slowly progressively worsening disease, which over the years, ever so slowly will worsen and causes our muscles to "waste-away":

This disease's process has an obvious detriment on a Cmt sufferer's mental health & outlook: My Neurologist said to me following my eventual Cmt diagnosis at the age of 53 years, Look, don't panic you are not on a "slippy-slope", and heading for a wheelchair anytime soon: Look on it as if you are descending down a set of stairs>>> >>> Step down ever so slowly, and carefully: >>> Stop, and assess you changed circumstances: >>> Then 'ACCEPT / ADJUST / MANAGE / the change: >>> Acceptance / 'POSITIVE' / management is the only way forward:

A word about surgical options, remember surgery is a "trade-off"? Yes you may gain something, however, you may also lose something: Only the physical deformities caused by Cmt are operable, NOT CMT itself:

Remember despite any surgical procedure, your weakened muscles will still continue "waste-away" with ever so slowly (velocity-speed) due them still receiving a greatly reduced signal strength via your Peripheral Nervous System (nerves just under the skins surface):

Please accept my best wishes for your health, you have a wonderful wife, and as my late mother always said "Your children a "Gift from God", who will reward you many over you as they grow up, fully dependent on their strong dad!

Best of health and good luck.....

John (Glasgow)

DD1234 profile image
DD1234 in reply to John1945

Hi thankyou for your reply I really appreciate your kind words and hope everything is well your end.

rec60661 profile image
rec60661

I know how you feel. I have been dealing with a pretty severe sensory motor neuropathy. I walk very slowly and am quite unbalanced and I deal with pain and numbness and twitching muscles 24/7.

I was very depressed up until three months ago. I started using progesterone cream after reading quite a bit about how unbalanced hormones cause depression. I also read that progesterone has been tested and can be effective for mood disorders. It really worked for me. I'm not affiliated with any products and am certainly not promoting this idea, but it may be worth looking into.

I wish you the best in dealing with your health issues.

I have found that CMT has progressed with a lot more pain and anxiousness as I approach my 70's.

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