What makes SFN so painfully cold?

[FeatherMe]

I am not looking forward to the colder weather because my hands and arms get so painfully cold. This summer has been cool but the pain hasn't been too bad. Can you explain what happens that makes me feel so abnormally cold in my hands, forearms, feet, and calves and what causes the pain? My body temperature in the past week has been as low as 95.5 and as high as 97.3. Does temperature have anything to do with this?

I read an article that suggests the urinary tract problems I'm having could be SFN. It also suggests my heart problems are also related. Now I've discovered that my stomach problems and fatigue can be related to SFN as well. There is no local doctor knowledgeble about this. The article I read said to eat smaller meals more frequently. My appetite doesn't exist. I usually have just breakfast and supper. Recent blood work showed possible malnutrition. Things just aren't working right. I feel old and sick and I don't like either feeling! The article wasn't hopeful about the future. I think most every part they mentioned that can be involved is for me. They talked about early dx to prevent further problems. That didn't happen so now what?

[MG (Admin)]

People with SFN have symptoms relating to the kind of information passing within the smallest nerve fibers.
This includes the autonomic nervous system (that affects amongst other things heart rate, the digestive tract, sphincter control) and pain.
Fluctuations in temperature in either direction can cause the pain to get worse.

They talked about early dx to prevent further problems. That didn't happen so now what?

Are all the doctors agreed now that you have SFN or is this still not confirmed?

[FeatherMe]

I understood what you said about the small fibers to a degree but what makes my arms,hands, feet, and calves so cold? I used to get burning pain as well but that hasn't happened in a long time.

Skin punch biopsies, one in the thigh and one near the ankle came back low in density and confirmed small fiber neuropathy. Outside of using lidoderm patches, wearing gloves, sweaters, heavy socks, long pants are my only options. I am sensitive to most meds so nothing has been provided that way.

My stomach, heart, and bladder seem to be involved but I don't have one doctor checking me for SFN. The numbness in my right leg has increased more than in my left leg, yet my left leg is weaker than my right. Lack of support and help is discouraging at times.

I've had three surgeries on my right foot in the same place. The first metatarsal big joint was fused with hardware that was too large for the area. Toes two and three have nerve damage and can't move separately and barely move any way. Toe two was lowered and I just discovered that the whole thing was fused at the wrong angle and that's why I have so much pain. It's been five months since the third surgery to remove the hardware. I'm headed to Boston where I asked if they could fix a bad angle fusion job. They said yes. Then I threw in foot drop and they said maybe, they would have to see. The source of the foot drop has not been investigated even though I have had it for a number of years. This may be the year!

Thanks, in advance, for responding about the cold.

[MG (Admin)]

Do you mean you feel they are cold or they are actually cold (if someone else feels your hands to check the temperature)?

[FeatherMe]

As my husband can testify, they are exceedingly cold and while I appreciate his warmth, he doesn't appreciate the freezing cold hands on his back!. Today my massage therapist remarked about how cold my foot was she was working on. I had to start wearing gloves today as the temperatures dipped into the fifties.

[MG (Admin)]

Do your fingers change color in the cold?

[FeatherMe]

I was diagnosed with Raynaud's about 20 years ago. When I was teaching and I had outside duty it happened a lot. First my fingertips went white and numb, then a painful purple. Since I have stopped it occurs very infrequently as I don't spend much time outside in the cold. Air conditioning would also set it off but that hasn't happened lately at all. There is no color change with the coldness I have felt since it started a year ago last August. The Raynaud's was basically fingers and toes. The SFN is hands and forearms, feet and calves, the entire part of each limb and it is bilateral at the same time. Right now my hands and arms are cold, my fingernails are white, not a sign of pink.

[MG (Admin)]

When was the last time you saw a rheumatologist?

[FeatherMe]

I saw a rheumatologist just two months ago. Is interested in what is going on with me outside of his office because he has another patient with similar conditions. He has nothing to offer.

[MG (Admin)]

Did any of the immunology bloods tests come back positive?

[FeatherMe]

In Feb. of 08 I had Quant AGG,M,A - all normal Protein Electrophoresis - all normal UPEP - RANDOM - all normal Immunofixation - all normal Sjorgren's was normal I have had abnormal ANAs 1:640 but I haven't had it tested in recent years. Are these the tests you were looking for?

[FeatherMe]

I thought I sent a reply to this but I may not have so I will repeat.
The blood tests done were:
Quant IGG,M,A
Protein Electrophoresis
UPEP - RANDOM
Immunofixation

All returned normal.

Are these what you are talking about?

[MG (Admin)]

What about ESR, ANA, RF Anti Scl? were these done?

[FeatherMe]

"What about ESR, ANA, RF Anti Scl? were these done?"

I haven't had any done lately. Prior to 2007 I had ESRs of 30, 28, 30 - ANAs pf 1:40, 1:640, and negative - RF <7 - no record of Anti Scl. I see my primary care on Monday and will ask about having these done, if you think it would be helpful.

[FeatherMe]

You asked - "What about ESR, ANA, RF Anti Scl? were these done?"

I have just received the reports and all are within normal range.

I did have a 24 hr. urine for creatinine and #1 VMA, METANEPHRINES, CATECHOLAMINES, HVA.

Results were within normal range with the exception of the metanephrines which were low at 75 with a normal range of 90-315 mcg/24 hr.
From what I read it can be caused by diabetes or nervous system problems. I do not have diabetes. Would you explain the possible nervous system problems? Thank you.

Oh, I did reach someone by phone in NYC at Columbia Presbyterian who said I was not alone in feeling the extreme cold in my hands and feet as part of SFN and that it is rare but it does occur. She suggested lidocaine cream for pain. I will get some tomorrow.