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Hi everyone,

I have studied the forums, and have found a comment (posted below) that closely resembles my symptoms/experience for the past 9 years.

"I have been suffering from autonomic, motor, and sensory neuropathies for more than four months. My heart rate dropped by ~30bpm. My BP, usually ~115/75, is down to ~80/50. I get twitches all over my body all of the time. I get pins & needles sensations, shooting pains, and hyper-sensitive spots (excruciating pain with slightest touch), but my biggest complaint is the BURNING PAIN. Neurontin and Lyrica definitely diminish it, but prolonged pressure increases the pain from simmering to SEARING. Does anyone else experience that? I can't sit for more than 10 minutes at a time. I have been waking up with numb arms for months. It freaks me out to find cold, dead limbs attached to my body! I've had TONS of blood work - all results normal. MRIs of my brain, c-spine, and lumbar region - all okay. Lumbar puncture - normal. EMG & NCV - fine. Next step - neuro-muscular specialist. Will keep you posted. I'm sorry you are suffering. I feel your pain! Sometimes, extreme temperatures (heating pad set to high/ice pack) applied to, or near, the site of the burning pain keep my nerves temporarily preoccupied so they don't register the pain as much. Tiger's Balm also provides some relief while my nerves focus on that icy-hot sensation. Scalding hot baths help as long as I can stand to be in the tub. If anyone else has any ideas, PLEASE submit them. Good luck to everyone, and be sure to post your results/diagnosis."


[B]My story:[/B]

I don't know how it happened, but (at 17 years of age) after I was diagnosed with acute Bronchitis, (which was near after a flu shot as far as I can tell), everything turned upside down.

I had developed numbing pain in my legs and arms, they would fall asleep rapidly in a given position, and I would wake up half the time with my arms or legs or even face completely asleep.

This progressed to "pain to the touch" and extreme sensitivity to heat and cold.

Muscle twitches in my neck, arms and legs were a regular.

Muscle weakness was apparent.

Shortness of breathe.

Digestive system is definitely abnormal (ie: very slow).

I noticed lymph nodes were slightly swollen in many areas, but would rapidly disappear on and off proportional to my peripheral symptoms.

This was a very stressful period of time as I have never done drugs (except smoking cigarettes) or had any sexual intercourse/contact.

Several blood tests were performed and all were normal.

Many of these symptoms are no longer apparent. I feel that I have either gotten "used" to them or have learned to cope with the symptoms.

Or taking vitamins and changing my diet has dealt with them.

Something along the way has definitely helped.

But they are still there, and I have yet to get to the bottom of this.

I feel that the neuropathy has reached my neck and upwards, and have difficulty thinking or "foggy-ness".

I feel as though I have a lack of blood circulation.

When I don't get enough sleep, I feel "empty", and my neuropathy is at all time high.

When I get more than enough sleep, I feel tired as though my nerves are "asleep".

Depending on the position I sleep in, I wake up with a different feeling the next morning, ie: cold hands and feet, lack of breathe, thinking issues...

When I put my head down on the table in a seated position, I feel the rush of blood going to my head, as though previously the circulation is being cut off. So it actually helps me when I put my head down for a while, it relieves some of my symptoms.

Currently I feel a burning and sharp pain in my feet, it comes on and off.

The symptoms are variable and unpredictable of when they will appear.

I would like to resolve this, any recommendations on what I should do?

Thank you!

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