Peripheral Nerve Hyperexcitability (PNH) Community
Cold-induced Peripheral Nerve Hyperexcitability?
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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Cold-induced Peripheral Nerve Hyperexcitability?

Contact with anything cold, be it an object or a cold draught, "damages" my body. The effect is permanent.

The symptoms reduce in intensity over time, but readily reappear following subsequent exposure to the cold.

Each subsequent exposure causes the damage to become more deeply rooted, more severe, and less likely to diminish.

This is not a matter of my feeling cold. If anything, I currently need to wear less to keep warm in winter than I did before the problem started.

I have to consider the consequence of my every action. I have to ask myself, "Will touching this object/carrying out this task trigger the problem or exacerbate it?"

There are now very few objects, including plastic ones, that I can hold without their being wrapped in a cloth. I can't even hold paper for long. If I wish to rest anything on my lap, such as a book or magazine, I must insulate my legs with a woollen garment.  

The symptoms, many of which are very strange and difficult to describe, include:

Legs and face feel as though covered in menthol - i.e they both burn and feel cold.

Affected areas are highly sensitive to cold.

Nerves feel inflamed, especially in the face and hands.

Hands feel sore when carrying out most tasks.

Small bumps appear on forehead which causes the skin to break when rubbed.

Literally all parts of the body are susceptible to the problem.

Problem characterised by being symmetrical. Both sides of the body are equally affected.

My problems commenced in 1983 some 7 days after receiving the 4th tetanus jab in the space of 9 years. Initially I experienced pain in the groin and legs, and during the course of the next 2 years muscle pain spread to the arms and back.

From 1985 lightheadedness similar to that experienced after having drunk alcohol became a common phenomenon each day.

In 1990 all parts of the body became susceptible to any cold-inducing agent. This is the problem that has by far been the most enduring and most debilitating. Some examples are:

1990 – the draught from an open car window left my scalp sensitive to cold. Further exposure to cold leaves it hyper-sensitive for several months at a time. On one occasion it felt as though the nerves were going absolutely haywire.

1990 – cold air blowing on my legs from an open car window resulted in my now having to wear up to 4 pairs of trousers in the winter. This exposure also lead to my thigh muscles tightening up. Walking became painful for many months following this.

1991 – a slight draught from a car window left the left ear sensitive to cold and feeling as though water were in it. 18 years later a subsequent draught has left it yet more sensitive. It were as if my ear had “remembered” that it had been previously affected.    

1996 – for many months my torso and arms prickled significantly, especially after bathing. This resulted from having spent too long wearing sweat-drenched clothing.

1998 – a cold wind blew in my face. I could not leave the house for 3 weeks due to the reaction. 11 years on and I have spent the last 4 weeks imprisoned at home since the sensitivity has been stirred up by some form of virus.

2002 – I stood on a tiled kitchen floor wearing both socks and slippers. I barely felt the coldness of the tiles. My feet became sensitive to cold and I could no longer stand or walk far without the muscles tightening up and my feet aching.

2009 - The inside of my mouth was affected after having 2 drinks – the reason being that the second was marginally cooler than the first.

Tests have revealed nothing and no one I have consulted has ever heard of such a problem.

Is there anyone else out there suffering similar symptoms?

Is anyone please able to shed some light on this problem or know of anyone who has treated it?


Many thanks for taking the time to read this.

Fred
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