[baba222]

Hi,

Could anyone tell me their idea of the hierarchy of damage related to pain for SFN nerve damage?

Is it in descending order:

Complete loss of sensation
Burning pain
Bee stings
Pins and Needles
Tingling
Normal sensation

What are your experiences and ideas?

TIA

[Healthgirl]

Originally Posted by baba222

Hi,

Could anyone tell me their idea of the hierarchy of damage related to pain for SFN nerve damage?

Is it in descending order:

Complete loss of sensation
Burning pain
Bee stings
Pins and Needles
Tingling
Normal sensation

What are your experiences and ideas?

TIA

My experience is this:
First came tingling and numbness that happens from sitting, being slightly cold, it happens to my hands, arms legs, butt, and groin area. This has spread and become worse. Some days are much better than others with this.
Next came shooting deep nerve pains all over. Sometimes its a throbbing/ pulsing and sometimes a shooting- like when the dentist hits a nerve with the drill.
Then came the burning. My burning has been the least of my problems. I can imagine that some people have that more often and more severely.
Then came the stinging.
Now I have a combination of all of it, but haven't lost sensation anywhere permanently. Parts that go numb come back with tingling and then normal sensation.

Have you lost sensation anywhere?

[baba222]

Originally Posted by Healthgirl

My experience is this:
First came tingling and numbness that happens from sitting, being slightly cold, it happens to my hands, arms legs, butt, and groin area. This has spread and become worse. Some days are much better than others with this.
Next came shooting deep nerve pains all over. Sometimes its a throbbing/ pulsing and sometimes a shooting- like when the dentist hits a nerve with the drill.
Then came the burning. My burning has been the least of my problems. I can imagine that some people have that more often and more severely.
Then came the stinging.
Now I have a combination of all of it, but haven't lost sensation anywhere permanently. Parts that go numb come back with tingling and then normal sensation.

Have you lost sensation anywhere?

I think I should have done ascending order.

Yes, very similar to yours. The stinging and burning have been a problem for me.
The painful touch and pain from wearing clothes has been very devastating.
Mine is all over with no normal sensation.
My feet feel numb, but not all the time.

Thank you for responding.

[madisongrrl]

Here is my progression story:

I had suffered from having lots of pain in my right leg from what was thought to be a sports injury (I'm not so sure anymore). My symptoms started abruptly in Feb 2014. I started to not feel very well for a few months before that (looking back, I already had neuropathic pain in my groin). Right before this phase started, I got extremely cold. I was colder than I'd ever imagined a human could be. My fingertips started turning purple as well. The pain in my leg and my foot increased.

In mid-Feb that year, it started strong with the feeling that I was being electrocuted. I had a big "bolt of lightening" travel down the length of my right leg. Then it felt like someone tied a rope around my right ankle and was trying to cut off my foot. Things just got so intense from there that I felt crazy.

Then came the hot, wet, warm sensations that traveled up my right leg and spread to my whole body. It went on from there - pelvis squeezing, terrible pain, fatigue, feelings of numbness, twitching, ear ringing, pins and needles. I couldn't seem to get enough oxygen. I even had hot sensations in my left ear canal and the ground seemed unstable when I walked because I was developing a balance disorder.

Then the burning and the abnormal sensations got out of control. It culminated in a trip to the ER (Apr 2014) due to a bed of nails sensation from behind my eye, down through my mouth and throat to my spine. I don't think I really had the proper vocabulary to describe what was going on inside my body. My body also started to get itchy right around this time.

Then came the delayed burning. I'd get my haircut and would wake up the next morning with burning on the back of my head. The burning was all over my body at any given time - face, head, left eye, neck, mouth, back, arms, butt, and even my labia too. The burning on my legs and feet is less than other parts, but they burn too.

The burning was terrible for several months. The pain in my arms was increasing. My face and arms would have a sandpapered feeling when I woke up each morning. When I saw the neuros in Dec 2014, they found that I had no true numbness when they did the needling test around my body parts. I have temperature loss part way up my arms and I can't feel the needle sticks as intensely by my wrists.

Right now, I'm pretty much left with lots of burning all over my body, a vestibular disorder that the ENTs can't figure out, bee sting sensations from my neck down to my butt, and face pain that mimics trigeminal neuralgia, but is likely due to SFN. And a negative punch biopsy because they couldn't take one from my arm....because they only do legs!!!!! UGH!!!!!!!!!!!!!!!!!!!

[pinkynose]

Originally Posted by baba222

Hi,

Could anyone tell me their idea of the hierarchy of damage related to pain for SFN nerve damage?

Is it in descending order:

Complete loss of sensation
Burning pain
Bee stings
Pins and Needles
Tingling
Normal sensation

What are your experiences and ideas?

TIA

My experience has been similar to yours and in the same order except I do not have complete loss of sensation. I also have twitching or pulling of the muscles on my feet or legs at night while I try to sleep. This came right from the beginning and has continued. The other almost constant symptom I have now is burning pain in feet, legs or back. The other symptoms you mentioned I have sometimes but not constant.

[janieg]

I had something interesting happen last week that was a first.

I developed this odd sensation in a muscle on the front, outside of my lower left leg. It was a constant strong vibration/buzzing, but very localized just to that area. Had never had anything like it, and felt fortunate there was no associated pain.

Then after three days, the pain came, but thankfully was very intermittent. It started higher up in that leg, went through that buzzing area, and ended on the outside of my foot. It was an extremely sharp shooting pain that stopped me in my tracks, and a couple times almost made my leg buckle.

Then it stopped after a few hours. And when it stopped, the buzzing in that localized area was gone.

Has anyone experienced anything like this?

[mrsD]

My experience with my hypothyroidism (which was mostly a compressive type PN):

I had pain in the feet to begin with. And numbness and tingling in the hands. Eventually the feet stopped hurting..and became numb. The hands would go numb on the steering wheel of the car or when I wore gloves, and at night sleeping.

The hands were the worst, and during my pregnancy were totally disabled and I had horrendous pain at night. Once I delivered most of the hand issues resolved to about 10% and would flare some with stressful activities. I continued to wear my braces at night for years after. I still do at times of flares.

My feet finally woke up when I was diagnosed with a goiter and low thyroid. I had tingling and pins and needles for many months and finally they went away after a year or so.
So I equate numbness with severe nerve compression at least for myself. Numbness that does not vary with the daytime activities, is worse than occasional numbness. I can get numbness in my hands when I have low blood sugars today. But it goes away when I eat something.

[canagirl]

Yes mine has been in the about the same order except I had major twitching first. I still have excessive twutching but it has lessened a tiny bit. The burning and stinging is ALL over my body at the same time. It doesn't come and go it's there. But I haven't lost sensation, I still feel everything. I guess this list scares me. Next step is loss of sensation? Since my burning/stinging is everywhere all at once does that mean I will have zero feeling everywhere?

[Neuroproblem]

Originally Posted by baba222

Hi,

Could anyone tell me their idea of the hierarchy of damage related to pain for SFN nerve damage?

Is it in descending order:

Complete loss of sensation
Burning pain
Bee stings
Pins and Needles
Tingling
Normal sensation

What are your experiences and ideas?

TIA

usually tingling and pins and needles come first, than tickling and prickling pain, in then jabs of pain comes in

[_dreamer_]

Hi. I'm still waiting for my skin punch biopsy, which I get tomorrow, but...for me, tingling and pain came at the same time. The bottoms of my feet burn, and are worse at night.