Levels of damage for SFN
 

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?

I think I should have done ascending order.:wink:

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.

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!!!!!!!!!!!!!!!!!!!

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.

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?

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.

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?

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

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.

Thanks for the update dreamer, I hope your biopsy provides some answers.

I am sorry that I was not clear. I do not have complete loss of sensation.

I was trying to get some answers regarding levels of damage. I still have LOTS of pain.

I have no normal sensation anywhere now. It is painful to wear clothes and be touched.

It is a nightmare that I could have never imagined.

Thank you for responding.

My experience of the progression of the SFN has been slightly different.
The autonomic symptoms began many years before the sensory symptoms.
The first sensory symptom was numb hands, next came the tingling and burning feet, and later reduced sensation especially in the limbs.
But I haven’t had severe pain.

Is there any correlation between the specific skin biopsy and EMG results and the exact neuropathy’s symptoms ?

From all the stories here, it doesn't seem like skin biopsy results correlate with symptoms. It only gives an idea of the physical damage to the nerves. Some people have bad damage with limited symptoms, and some show no damage but have severe problems.

I haven't seen many comments about EMG results, so not sure on that one.

From what I have read EMG testing is ineffective for SFN.

Madisongirl... You say the burning was bad for several months. Has it gotten better? If so, do u think it was because u started meds? Or did the burning turn into numbness? Or did the burning and stinging just lesson in their own? ( I know u say u still have it but u said it was intense for several minths)

There are probably several reasons why I could be doing a little better now than how I was at the beginning. I've been at this for 1.5 years so I could be getting more used to living in this abnormal state of pain. I'm on more medication now than when I was when it started. (I use a medication app for my iphone to remind me to take all my doses of meds.) Another important factor is I understand what is wrong with me now, which helped reduce some of my emotional stress. I'm a science person and work in a science setting, so I feel like I have a good understanding of the nuts-n-bolts of this disease. This helps me understand what to expect and what the things that I should try to do in attempt to find an underlying cause.

Here is the thing, some days I feel like I can get through the day...other days I tell myself that I need to break down and get a pain doctor. I went through several weeks of feeling awful. The burning on the back of my scalp was getting unmanageable. The pain all over my body was keeping me up half of most nights. Then, I took last week off of work and slept 8 hours each night. This week I'm feeling better, I'm more under control. I'm less stressed. I hurt less. The intensity of this thing can bounce around. It's way too early to know at this point if I'm getting better or worse. I'll probably need another few years or so to determine that.

I get all kinds of symptoms when I sit burning, pins and needles feel better when I am active, I want to be able to relax. I also get the same symptoms after or during dinner meal

I think you have the key to this disease. Coping, adjusting and understanding and taking a rational approach stress and exhaustion play a big part

Two of the many sensations I have...

I carry my cellphone in a pocket on the side of my left thigh....I feel like my cellphone is vibrating but vibration is turned off on the phone. :rolleyes:

And I have to remove pretend rocks from my shoes all the time...Take shoe off...look inside....no rocks. So I call them pretend rocks.

There are many more.

:confused:

Hello.
First it was pins and needles and pain in my hip when walking. Than after some days it was everything normal. I had a medical diagnostics for some other thing (I had a cold then) ,after that I experienced vertigo, headache (for some hours), strange vision for a minute or two, that all lested two weeks but not everyday, but every fourth day for example. And than finanlly the most annoying feeling ever started in my toes (tingling or vibrating sensation), after three days it spread on my legs from bottom to top in one day. It was very irritating, tingling was strong and vibration feeling also. It stayed on my legs for two weeks, than it went to the back, and back of the head. Now it is everywhere. On my belly, on my arms, but it is especially in my legs. I get also occasiaonyl tingling all over body in different areas, everyday but it is not constant. Vibrating is always present, when I sit down and move my legs or cross my legs or when I am lying in my bed and touching the surface. Has anyone the same expericne with these vibrations? When I sit still I do not feel vibration. It feels like my skin is irritated. Some days are good, some bad. It was almost three weeks and it was real better, almost no weird sensation. Now it all came back :( It started in April :(