Hi.
Being a newly diagnosed PN sufferer, I am still trying learn about my condition. Recently I was caught out in the cold (Scotland) with poor shoes and socks (my bad) well my feet got really cold and for a couple of weeks now my feet seemed to have gone into melt down and are aggressively bothering me. Like a new level of uncomfortableness.

Is this normal? Will the symptoms die down?

You will remain more sensitive to the cold, and must pay attention to your footwear. Do you have sensation in your feet? You mention that you have sensory motor neuropathy, as do I, but i cannot feel my feet at all or whether my shoes fit, are comfortable, etc. if this is a problem for you you may need to go up a size and wear orthopedic shoes with very soft socks.

Symptoms often settle down after a flare up. You will also get used to some of the sensations and it will seem more bearable.

Thanks for the information. I have an appointment to see a orthopedic next week who is checking my feet and will advise. The flare up you described has not settled yet.

Hi and thanks for the info. I see an orthopedic next week. Yes I do have the fuzzing in my feet and it seems to be steadily increasing in intensity. I have come home for tests in Scotland and hope when I go back to CA that the weather there will help and take away that problem. If I can use flip flops or walk in bare feet they seem to e more tolerable.

My condition: Mild Motor and Sensory Axonal Polyneuropathy.

I am at a loos for really what to do. My work requires me to be on my feet and active. Can I continue to hind this in my line of work which is the world of sport? My belief is that if I still try and use my legs and these muscles then this may hold back atrophy? But am I cause more damage than good? I know I must move more into the management part of my work.

I will repost this just to reassure you- you will not injure yourself by exercising. You may strengthen the muscles which are not atrophying, which is a help as they will have to compensate for the ones which are. There is no way to prevent the atrophy in the affected muscles as this is caused directly by the nerve deterioration, which you cannot control.

well that isnt entirely true for many pners. if you can feel your feet or lower legs for instance you can easily sprain or break you ankles or break your toes, so you have to take into account what kind of exercize is safe for you depending on what is affected by pn.

I was not thinking of that- it is a good point. I would never know if I had broken something unless it turned color and became swollen, just as I can put my foot in scalding water without noticing. The OP seemed worried about exercise that he is accustomed to in his profession and whether that would worsen his condition, and it seems unlikely, rather he should maintain what activity he can.

The sensations I am now having in my feet are new. It's as if they always feel cold. The same sensation I felt after I was exposed to the cold earlier in the New a Year while standing outside to long with not enough socks on for the extreme conditions.

I am wondering if this will regress once I return to CA where I work? If I am in a warm climate? Could this flare just calm down totally? I guess only time will tell?

Or is this feeling normal for my condition? How does one learn to accept this feeling and adjust to it? That's what's on my mind all the time right now.

There is a condition only triggered by cold. It is cryoglobulinemia.

That long word means peptide antibodies over produced by the bone marrow, circulate in the body, and when exposed to cold, they thicken like a gel and prevent the blood from circulating properly. They loosen up in heat, and there is no treatment for this except avoidance of cold. Many of these patients move to warm climates therefore.

This can be tested for with a blood test. Most doctors do not screen for it at the beginning of PN symptoms, and you would have to ask for it, in fact. It is not as common as other causes triggered by cold.

Also if you have other circulation problems, smoke for example, you can have other factors reducing blood flow to the feet.
Raynaud's syndrome is one, where the blood vessels contract and that is more common. Autoimmune issues can reduce blood flow to the feet too. When the blood flow to the feet changes, nutrients cannot get in, and by products of metabolism cannot get out, so the nerves suffer from this, and if it is not fixed or attended to, the nerves can eventually die and that is permanent.
Long standing inflammation/damage in the tissues of the feet cause poor blood flow too. This is why the epsom salts are so important. They help the tissues return to a more normal functioning.

If you do not have these symptoms in your hands, I would look at mechanical things involving the feet. Your sport, may be a factor, with the feet being so important in soccer. Kicking may over time damage the joints in your toes. Tying laces too tight compress delicate nerves. So seeing a sport doctor or podiatrist with experience in sport injuries to the feet would be the first line you should pursue. Neurologists in general are not going to find any triggers that are mechanical damage in your feet.

The drugs they give you (except for IVIG), do not heal anything.
There is however some new research that amitriptyline or its cousin nortriptyline has some activity in peripheral nerve regeneration. But that is new information at this time.
They cover up symptoms, only (gabapentin, Lyrica, Cymbalta). Most doctors believe you cannot heal, and that is just a shame. Many patients can and do. 100% may not be attainable but many do improve significantly. That link I gave you has posters who were very disabled by alcohol, and they are improving and posting about it. Denial is your enemy and must be changed.

http://neurotalk.psychcentral.com/thread104096.html
This is the link again.

My feet and calves are always cold to the touch whether it is warm/hot weather or cold weather. The only time they are warm to the touch is when I get out of bed. In the night from time to time they shall we say flare. That is the nerves. Socks at night in bed are not for me. I tried it several times and no thanks.

Wearing long underwear in the winter helps but the feet and calves are still cold to the touch. But I wear it regardless in the winter. It gets terribly cold where I am.

This is just all part of CMT. Also, I can feel everything. My legs and feet are not numb. Some CMTers legs and/or feet are. My feet are very sensitive. I cannot walk on non carpeted floors only a few steps. It is like walking on bones or broken dishes. I also wear slippers regardless if it's on a hard floor or carpeted. And that is only til I can get my shoes and socks on.

As I said, my feet and calves are cold to the touch regardless if it's warm/hot weather or cold weather. Having trouble with cold is probably due to the loss of muscle mass in the feet and legs. Decreased muscle mass decreases the amount of blood that goes to the lower limbs. Circulating blood is what keeps the normal temperature in tissues.

On the other hand, hot or burning feet is a sign of axonal neuropathy (loss of wiring of the nerves). Pain due to nerve damage in CMT does respond to Neurontin (gabapentin) which is an anticonvulsant.

I do not take anything at the present time however I know that I certainly could. In saying that though, I do use Advil. I do have a high tolerance for pain but some days really get to me. My Mother took way to many medications which were prescribed for her by a doctor who really didn't know CMT. She was way over medicated which is something I learned thru my years and years of reputable research and going to my support group meetings. Medications that are on the medical alert list now. There wasn't such a list then. Those medications only came to light in the later years of her life. The damage was done. That is probably why I am very hesitant when it comes to taking anything.