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Living with Polyneuropathy CIDP, GBS, & CMT

Where to start

Hello, I'm Keith. Thank you for adding me to the group. I'll apologize up front for the length of my story. It will be long regardless of how brief I attempt to make it.

It started for me at a young age. I really didn't know it then, but the signs were there. Unusaully high foot arch, numbness and tingling in the feet. Bouts of deep aching in the legs who's source couldn't be pinpointed. I was quite athletic when I was younger. And wrote much of it off to playing & working hard.

But as time passed I started to catch on. I was in very good shape. For many years I played hockey, worked out at the gym, biked for miles, worked a demanding full time job & still had the energy to work as a musician several nights a week. But I began to notice that I was running out of gas before everyone else. There were times after playing a hockey game or a night out of music.That I felt like I had just gone 15 rounds with the champ. No problem I'm just getting older.., but nobody around me was hurting in the same fashion! I knew I was in better physical condition than most of those around me... and I was becoming increasingly puzzled.

Then work and my social life began to be effected. On more than one occasion during a date, I left a restaurant before dinner was finished. The sudden onset of deep aching throughout my lower body would drive me straight home to bed for the night. Assuming a nights rest was the answer, of course. At work, the day finally came when I was taken off into an empty office and asked with sincere concern... if I was alright? And right then... I knew the answer was No.

By the time I was actually diagnosed, my health was completely consumed. My leg muscles had atrophied to the point of needing assistance to walk. And there were no more little breaks between the deep aching & electrical shock like shooting pains. I had no appetite, and no matter how tired I felt... I couldn't sleep.

Unfortunately for me, things would get much worse before they would get better. Massive amounts of pain killers were the only thing that gave me relief from the pain. But they bring a fresh hell all their own. And nothing seemed to help the sickly feeling that I can only enliken to the flu. My sleep had gotten so bad. I was passing out while walking. My arches collapsed and feet turned inward (over pronation), My toes bent in a way similar to making a fist the wrong way... with you thumb on the outside. With the small toes curled under & the big toe wrapped around the front. I would spend the next 10 years terribly ill & in a wheelchair.

I've been fortunate in life for many things. But none have served me as well as my ability to remain positive & determined in the face of adversity. Determination after all, is merely positively focused stubborness. I've always succeeded most when least expected. I often laugh when people ask me "what made you get into playing music"? My reply... I was told by an elementary school teacher that I had no musical ability! That began 6 yrs of singing in school chorus, followed by many fun years of singing or playing drums professionally.

A sliver of opportunity appears, and the fight is on! I was asked by my doctor if I'd be interested in trying a neuro-stimulator for the pain. And I agreed. It's been 4 or 5 years now, and it still helps when nothing else does. It gave me the chance to begin reducing my medication levels. Slowly but surely, not only did the doses shrink. But the need for most of it was gone altogether. 60mg of instant release Morphine on a normal day... gone. Clonazepam, Alprazolam, flexeril... gone. 100mg of Methadone on a normal day... 85mg gone, now 15mgs daily. And other than vitamins, that is the only medication I am currently on for CMT.

What a mess... so here I am out from under my medication cloud & broken from head to toe. Still feeling sickly & atrophied so bad, I couldn't climb a set of stairs... not happy about it, and itching for a fight! Why I've had my entire life taken from me and I want it back!!! I'm taking it back, and nobody's going to stop me! I WILL NOT BE DENIED! <--- caps because I'm screaming this from the top of the mountain!

Where to start didn't matter. Because nothing would be overlooked. Diet??? I learned how to eat healthy. I removed everything from my diet that was not beneficial...(Uh, I find an occasional chargrilled burger up at the lake beneficial). All junk food or drinks, processed sugars, bad fats, and unecessary carbs... gone. I added vitamins and supplements as well.

Exercise was next... I did the right thing first, and consulted my physician before starting. I was given the green light, so in came the exercise bike and light weights. I spent hrs and days on YouTube putting together a set of exercises that suited me. Focusing on "core" strength 1st, and including exercises that target all the areas that need it.., and cardio of course. My only criteria was to have the physical ability to perform the exercises correctly. I was amazed a what I was able to learn without outside help. I'm not muscular by any stretch of the imagination. But I take the stairs now... everytime. I ride a bike, go hiking... and I just spent 2 wks pounding the pavement with my grandchildren at Disney and Universal Studios. 4 yrs ago... I was in a wheelchair!

It would be nice if it all ended there... happily ever after... wouldn't it? But I refer to it as a fight because there's an opponent. This opponent doesn't take a break and it wants to win as badly as I do. It will need to get used to disappoitment...

My next step was to seek out someone that could help with my feet. Orthodic inserts were not going to fix my situation. I eventually found a surgeon that I felt comfortable with, and the next jouney began. All 10 toes done followed by extensive left foot surgery to relocate both the front and heal as well as extending the Achilles Tendon... fully healed and 1 more huge surgery to go... rebuilding the right this time.

This is where I stand today. I'm becoming social again, even hoping to meet someone special again. I've been playing music again for nearly 2 yrs. I live alone, and have no problems doing the things I wasn't able to do, like laundry, shopping, driving, visiting my children and grandchildren whenever I wish, and whatever else life brings.

Mine is a tough story. This disease nearly ravaged me before I was able to get in my first blow. Most won't have as severe an experience. And many, like my father, will have no idea they even have it. But I am living and breathing proof that there is hope... no matter how deep the hole is. You can have a life. Be strong you're not alone...

Fantastic and very inspiring but heart wretching! I have a similar story , as do many of us here, and it is an ongoing journey! We do have to have determination, stubborness and strong character to see this to the end! Thank you so much for sharing and caring enough to bring it here to us! BTW I sing and it is so much of the time, my saving element!

CM

Very inspiring story, I myself have not found the fire within to fight. One should be able to find the strength on their own, but I am having trouble. But you have inspired me to dig deep.

Hi Jon

Sometimes our strength is best spent on maintaining what we have. Rather than pushing too hard, too quick. And never is ones inner strength measured by ability to conquer what we have no control over. With that being said, small steps are what helped for me. But one very large step helped me to begin... that was the implantation of a neuro-stimulator to battle the pain. Everyone is different, but I swear by mine. It's surely worth discussing with your neurologist. If it turns out to be something you're interested in... I'd be happy to offer some operational suggestions that are a great help to me.

Getting pain med's down to a minimum is also key... and where a "stim" helps tremendously. As necessary as pain meds are... they DO bring a fresh hell all their own.

A change in diet actually helped... Nutrition seems to be critical in a more immediate sense. My body no longer handles junk. Eating can be difficult when you're not well. So it's more important that what you take in is beneficial... that strength needs to come frrom somewhere.

Mental health can be just as devistating... it's important to find positives. Especially when progress isn't immediately evident. Try to not allow days to slip away without going outside, eating a real dinner, or dressing in your favorite clothes. In short... try to keep your days nomalized as much as possible.

Make sure your doctors are completely behind you. These people are needed in your corner, not second guessing you. Try to remember that they are selling a service. If you are the buyer, they work for you. There is nothing wrong with changing doctors if you don't feel you're getting the best care. And I strongly suggest that when you shop for a new doctor. That you go in with a set of critical questions and politely "interview" the doctor. If they don't care for that, then you've accomplished what you've set out to do. And that's ridding yourself of sub standard care.

Something that probably never crosses anyones mind, is exercise. Once I had the stimulator implanted & accomplished reducing my meds. I began to feel like doing much more. But I was still feeling sickly. Some days I would wake up at 8a, but couldn't shake the lethargy until the day was all but over. I was achy, stiff, and miserable. I decided to try excercise...

I started with a simple exercise bike & light dumbells in my living room. The bike was a huge part, as I began slowly and added distance over time. In no time to speak of, I was peddling 10 miles a day! 5 miles in the afternoon & 5 in the evening. This simple start seemed to catapult things into gear. My sleep pattern straightened out, and I began to look forward jumping in the shower again right after waking up. Even a cup of coffee started tasting normal again.

Over the next 6 months, things got amazingly better... I now go to the gym 5 days a week! But it took time. A lot of time.

It's not easy, but try not to be too discouraged. If you get a window of opportunity... jump on it. I found charting good days & bad days helped me see the small progress. Positives of all kinds are needed. Whether it's your prognosis, home life & relationship, or just feeling good about who you see in the mirror. Dress, shave, go out for dinner, set small goals... You will make it to the other side!

Thank you for such inspirational words. This is exactly why I joined this group. You hit home on a lot of key points, right now unless I work - I don’t leave the house. I feel as if I am in a state of depression. Baby steps are key, but I am having a hard time with just even trying a baby step. Knowing that you have been able to get back where you once were makes me feel like I can do it too. I am going to start by eating better (you nailed it in your last response) that I haven’t had a real meal in a while, I just stick with junk which I know is unhealthy.

If I may ask, how did your mind set change? I am really struggling with things, and I know this group is a grest stepping stone. But right now my mind is all over the place.

Again, thank you for responding and taking the time to tell me your story.

Here’s one more for you, I did have the help of a pain coach. Helped me get past all of my personal stuck points basically start with baby steps. Now I can not only cook again :grin: (healthy), I can go to the gym, and I also ride a bicycle. This year I will participate in my first BikeMS event which is 130 miles over 2 days.

Thread reunion! How is everyone? It’s been a while since we heard from those reached out on this thread, and it would be nice to know how everyone is doing now.
@bteeter, are you still cooking, biking and working out?
@DoingWell53 let’s hear from you again!
@Jon_Thompson and @CM1 what’s new with you?
Seenie