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Old 08-18-2014, 08:15 PM #1
Alone&Tired Alone&Tired is offline
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Join Date: Aug 2014
Posts: 1
10 yr Member
Alone&Tired Alone&Tired is offline
Newly Joined
 
Join Date: Aug 2014
Posts: 1
10 yr Member
Default NLD SFN.... I am so tired

I was recently diagnosed with non- length dependent small fiber neuropathy in June 2014 after several months of testing. I have the best neurologist ever. You know how sometimes, extremely intelligent people are somewhat intimidating? My neurologist is not and yet he is pretty much the smartest person I have ever met. I literally trust my life in his hands.

He understands but I feel like no one else does. I am so tired. I am on Nortriptyline and he recently increased the dose. I work with inner-city kids and my job is somewhat physically demanding. I am lost.

I am 35 and have teen boys and a preteen girl. I feel alone. My husband said today that I needed to exercise and then I would be fine. My response, "Let me go grab a shark to take a bite out of your thigh and opposite lower leg and then see how much you feel like running. That is how I feel!"

I am exhausted. I struggle to fall asleep and then when I finally do, I can't wake up. My job requires to walk alongside other people during their times of trial. And now as I walk through mine, I feel alone.

My doctor is trying one last test to determine if it is a B12 deficiency. He tested a couple months ago and it was negative. I have had A LOT of blood drawn. He said he just hopes that is it because he can fix it then. If the result is the same as before then my case is idiopathic.

I am also having orthostatic hypotension. There are moments when I stand that I feel like I am going to throw up and pass out.

I love summer but this one has sucked. No matter the temperature, the pool feels freezing to me and causes pain. I used to love swimming. I could spend my entire summer in the water and I dreamed of one day living on the ocean and spending my entire year in the water.
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Lara (08-18-2014)
 


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