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Old 12-06-2012, 12:03 PM   #1
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Red face Chris' story and Questions

Good morning,

I wanted to give everyone a quick background about myself and ask a few questions since this is my first post.

I was a 29 year old mountain athlete that participated in big mountain skiing, rock climbing, backcountry motocross and anything that got me into the mountains of Montana.

On May 15th of 2011 I finished a typical ten mile hike with a good friend. The next day I felt some achilles pain in my left leg. Within two weeks it was both achilles and over the next few weeks the pain moved up to below each knee. This of course was terrifying! I was first diagnosed with bi-lateral achilles tendonitis. The doctors started me off by doing the traditional treatments for tendonitis (ice baths, stretching and strengthening) for six brutal months. This made that pain unbearable and brought me to the point of not being able to walk more than a few feet at a time. I had to pee in a jar for months because the bathroom seemed to be in a different time zone.

This is when the hunt for what was afflicting me really began. I will spare you all of the details but so far I've be diagnosed with Complex regional pain syndrome, enthetis disease, inflamitory demylanating neuropathy, hereditary induced peripheral neuropathy, toxic induced peripheral neuropathy and post viral neuropathy. There were many more diagnosis' by have since been ruled out by testing.

The diagnosis of hereditary neuropathy came for the University of Kansas' director of neurology. I flew there to hopefully get some answers. I would be the first person in my family to ever have a neurological condition so it seemed unlikely after so many years of a healthy and physically active life.

The diagnosis of Toxic induced peripheral neuropathy came from the University of Utah's neurosciences center. I was working on a commercial swimming pool daily for 19 months and two weeks into the job I was involved in a major chlorine gas accident that put me in the hospital with eye and skin burns. I had on a half-gas mask but the room was 100 degrees F and the doctors say the gas was easily absorbable into my sweaty skin. The discharge of gas was so strong that the large university recreation center was evacuated for half the day as the HAZMAT team worked. I was fine for the next four months minus heavy foot sweating, but then the pain started. During this time I was working on the pool for an hour each day over the next 19 months. I was recently fired from my job because of my disability and since then the pain is SLOWLY resolving. Have any of you heard of severe neuropathy caused from chlorine gas, calcium hypochlorite or hydrochloric acid exposure? In my heart this diagnosis seems to be the most obvious.

Currently I'm taking 3600mg of gabapentin, 800mg of Tegratol and 300mg of wellbutrinXL daily.

I'm taking fish oil, A-Lipoic acid, milk thistle, vitamin E and a B-complex 50 vitamin. Has anyone found relief from these meds or supplements?

My wife and I also went on a ďcave man dietĒ. Only vegetables, fruits, nuts and lean meats were consumed for a year. I was trying to control inflammation and weight gain. Iíve put on 35 pounds since we stopped doing the diet. Aerobic exercise is not an option for now but we went back to the cave for most of our meals again.

All of my blood labs have been negative and the last EMG/NVS were negative. Three months ago the two tests showed mild neuropathy. I also have had 3 MRI's (lumbar spine, brain and both feet/ankles). The pain is still strong so the Doc's say it's the small fibers that are causing pain still.

As with most everyone reading this post the neuropathy has altered my life extensively. I no longer an able to participate in the sports that made my life enjoyable anymore. I have lost my job that I loved and pretty much lock myself in my house all day. The depression is the hardest part about all of this. Most of the friends are long gone and my family lives 2000 miles away so support is hard to come by. Even with good government insurance the money has been long gone.
The pain was so bad I could not have shoes on or put bedding over my feet at night. Each step was only 3-4 inches long because I felt like I would rip tendons if my strides were longer. I had redness, spasms, ice cold legs and cried everyday for the first year. Do most you find that the general public or loved ones have no idea how bad the pain really can be?

Thankfully the pain is becoming manageable and I'm now "city functional". Meaning I can go to a movie in town but Iím still far away from being back in my beloved mountains. Thanks for reading my rambling message but over the past 20 months Iíve felt like IĎm on a different planet than the rest of the world.

If anyone feels like I have during all of this please reach out to me. There is much I have left out of this post like alternative treatments, mild exercise routines and more.

Thanks so much!

 
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Old 12-06-2012, 01:10 PM   #2
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Re: Chris' story and Questions

have you thought about pain management. i know what you mean about the shoes and the covers i still work but have to take off my shoes and rest my feet on a pillow during the day and when i get home from work i can do nothing but lay in bed because the bottom of my feet hurt so bad . pain management helps a little with making through the day.

cocoa



cocoa

 
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Old 12-06-2012, 01:56 PM   #3
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Re: Chris' story and Questions

I asked my local neurologist about that but was told there are no pain management doc's in Bozeman. I did the shoes off, pillow trick for a long time to get through work days. I know what you mean about laying in bed after work. It was hard for my wife to understand, at first, why after only a 4 hour work day, all I could do was crash on the couch for the rest of the evening. Thankfully she is on board now and really helps me get through the day.

It sure is crazy how something like this can seriously change your life. This is my first injury/sickness ever, so it's been hard to handle.

Best

 
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Old 12-06-2012, 09:06 PM   #4
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Re: Chris' story and Questions

Hi Chris,
I can totally relate to how you feel. I have MS and when first dx went into a deep depression for two years because I was 40 and very active physically. Thirteen years later, I have neuropathy where my thighs are in constant pain along with the bottoms of feet and sides of feet. Now, it hurts to have anything on my feet but am working 20 hours a week. I miss the days I used to have and really have nobody to talk to. Even the MS sites don't understand what we go through with the constant pain
My neuropathy will never get better and the constant pain will never go away. I am trying to come to terms with this but it is very hard.

I go to a pain specialist and has made a big difference but still suffer.

Just know you are not alone in what you are going through. Family and spouses don't understand because unless you are going through it, you really don't know.

Last edited by Mod-S4; 02-01-2013 at 05:47 PM. Reason: Unnecessary quote removed.

 
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Old 12-26-2012, 12:09 PM   #5
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Re: Chris' story and Questions

Hi Chris

Your post is similar to my story where it all started with bi lateral achilles tendonitis after I jumped off a truck tailgate. It settled in my feet as plantar fasciitis and nestled in there for years. Many others things joined in later but that is not for now.

The most important piece of advice I can give you is to never give up, ever. Never, ever. There is hope! The journey itself is all about learning and moving forward, so if you get stuck, just move forward, anyway you can. Sounds like your fascia is stiff as well so keep up with massage and stretching, everything you do is helping.

Sounds funny but embracing the journey will be healing, as much as we dont want to go there meeting it half way and taking control is moving forward. I was diagnosed with peripheral neuropathy and later small fibre pn, still learning about it and a little confused about the toxin involvement but lyrica has allowed me to sleep and my positive attitude allows me to work and move forward. If we give up we have lost and become the type of person that others ovoid. We can e admired for our attitude and our approach on life, whichever way you,choose.

I would also suggest meditation and any type of exercise, even the few steps that you take, or the small stretches that you do. We all need hope and sometimes sharing a piece of ours can move another forward. This is something we are all apart of, a small part of the growth of humanity. Keep up the good work, it can be lonely but there are others on the same road that understand and care.

S

 
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Old 12-27-2012, 11:20 AM   #6
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Re: Chris' story and Questions

Quote:
Originally Posted by Spiritwithin View Post
Hi Chris

Your post is similar to my story where it all started with bi lateral achilles tendonitis after I jumped off a truck tailgate. It settled in my feet as plantar fasciitis and nestled in there for years. Many others things joined in later but that is not for now.

The most important piece of advice I can give you is to never give up, ever. Never, ever. There is hope! The journey itself is all about learning and moving forward, so if you get stuck, just move forward, anyway you can. Sounds like your fascia is stiff as well so keep up with massage and stretching, everything you do is helping.

Sounds funny but embracing the journey will be healing, as much as we dont want to go there meeting it half way and taking control is moving forward. I was diagnosed with peripheral neuropathy and later small fibre pn, still learning about it and a little confused about the toxin involvement but lyrica has allowed me to sleep and my positive attitude allows me to work and move forward. If we give up we have lost and become the type of person that others ovoid. We can e admired for our attitude and our approach on life, whichever way you,choose.

I would also suggest meditation and any type of exercise, even the few steps that you take, or the small stretches that you do. We all need hope and sometimes sharing a piece of ours can move another forward. This is something we are all apart of, a small part of the growth of humanity. Keep up the good work, it can be lonely but there are others on the same road that understand and care.

S
Hi Spirit, I am constantly battling plantar fascitis in both feet, along with nerve pain in both feet and thighs. For you, how did you deal with the plantar fascitis and what happened for it to go away?

I also wanted you to know, that your post really hit home for me. I am that person you mentioned that people want to avoid. Your post helped me get a better look at myself and I appreciate that.

I guess, for me, I am afraid of what the future brings and have been on a gloom & doom journey....... I need to pick myself up, dust it off and go on a better path for the sake of my health and the health of my marriage and family.

Thank you!

 
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