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.

Hello Alone&Tired,

Welcome to the NeuroTalk Support Groups.

Here's the link to the
Peripheral Neuropathy Forum

I'm sure you'll find information and support from the users there.

There's also a sub-forum there for
PN Tips, Resources, Supplements & Other Treatments

plus... there's the
Vitamin B12 Thread

If you need any help navigating the site, please just post again and someone will help you.

take care.

Great to meet you!!
 

Welcome Alone&Tired. :Wave-Hello:

Welcome to NeuroTalk:

I'd suggest at this point you get the numerical
Result to be sure you are at the new low of 400pg/ml
At least. Labs are still reporting Lower
Levels as "normal" and neuro symptoms
Can occur at lower levels.

Some more background if you provide that
So some of us can see if you acquired this
From medications prescribed, vaccines, trauma ,
Toxins exposed to, or recent illnesses, etc.

If you take any vitamins containing B12 stop them
about a week before the testing to avoid
Artificial elevations that will be misleading.

I am so sry that you don't hv the support from yr husband. I do hv support however I know it becomes very trying on the one who is not sick b when it is all said and done they cant possibly understand how we feel never being in this position. I will pray for you and yr husband. Words are words what can one say except that they care, I truly hope that you are blessed with compassion from others especially yr family. God is in control and he does understand and love you try to look unto him who created us and knows everything we feel. You will be in my prayers I can promise that