Hi Marie sorry for your pain I do not have a lot of neuropathic pain, my symptoms are weakness and numbness in my lower legs. (I am non-diabetic) I do like to think that there is always the chance that our nerves can heal. I try to focus on overall health, so they have the best chance of doing so. It can get very discouraging, especially when you feel you are doing everything to help them along and it is just not happening. I keep my hope going by keeping up with what is coming out for technology. Right now I have been reading information on nerve conduits and adipose stem cells in the hopes that they will one day be available for all people needing peripheral nerve regeneration, no matter what the cause of the damaged nerve may be. Hope you have a good day and do something you enjoy to take your mind off that pain

[QUOTE=Marie33;1118921]Hi Marie, No it isn't better unfortunately. Don't give up hope please! That seems to be all we have right now.

I share in your discouragement and frustration, Marie, and I've only been dealing with it for a little over year. I've always been athletic and active, and this has really thrown me for a loop.

If any goodness has come from it, it's that I discovered an underlying sugar problem that would have flown under the radar for years. I was never a sweets person, but I did have a high carb diet from my "flexitarian" ways. I had hoped changing that might show me some improvement, but thus far, nada.

For me, acupunture has been what has helped me the most of anything I've tried. My Neurologist recommended it. I had no expectations when I started it and it took a few weekly sessions to start getting relief.

After I started getting pain relief in my feet and hands, we started stretching out the time between sessions. It is not covered by insurance, but now I'm only going every six weeks. I still have some flare ups, but the pain is much more tolerable.

[QUOTE=janieg;1119134]I share in your discouragement and frustration, Marie, and I've only been dealing with it for a little over year. I've always been athletic and active, and this has really thrown me for a loop.

If any goodness has come from it, it's that I discovered an underlying sugar problem that would have flown under the radar for years. I was never a sweets person, but I did have a high carb diet from my "flexitarian" ways. I had hoped changing that might show me some improvement, but thus far, nada.


Hi jan
I'm so depressed and upset i can hardly read and write right now. But I had to respond. I'm sorry you have to deal with this beastly thing. If I read your signature right it said you have I-sfn. I was always healthy and active too. This has also thrown me for a loop also. 4 years later still can not find a cause. Unacceptable! I'm so angry right now, feeling all of this pain and these painful sensations.not fair!.
Your underlying sugar problem , are you saying your pre-diabetic or diabetic? What was your a1c? How did they find it. My a1c was 5.7 and I only weighed 117,ate most high "carbish" like you.
I have been keeping tight sugar control for over 2 yrs now hoping it would change things for the better, nada for me too...something has to give. There is no rhythm or reason for this..I don't know what else I'm supposed to do!! cant take this anymore..

[QUOTE=northerngal;1118953]Hi Marie sorry for your pain I do not have a lot of neuropathic pain, my symptoms are weakness and numbness in my lower legs. (I am non-diabetic) I do like to think that there is always the chance that our nerves can heal. I try to focus on overall health, so they have the best chance of doing so. It can get very discouraging, especially when you feel you are doing everything to help them along and it is just not happening. I keep my hope going by keeping up with what is coming out for technology. Right now I have been reading information on nerve conduits and adipose stem cells in the hopes that they will one day be available for all people needing peripheral nerve regeneration, no matter what the cause of the damaged nerve may be. Hope you have a good day and do something you enjoy to take your mind off that pain

When is "one day"..when will they have these stem cells for damaged nerves?..will it be in our lifetime??...I dont think so...I dont think they even know what they heck they are doing!! We are suffern, they keep throwing all different kinds of pills at us and tell us to live with it..thats been my experience. and nothing works!!. they sit there and look at us like we are crazy..They have no idea what we are feeling. Unless they have Neuropathy they will never understand the painful sensations we feel...It really , really Sucks!! My life will never be the same!!!!

What have they told you as far as your diagnosis? Have you had EMG/NCV testing? Thank you.

Sorry, just now seeing your response to me, Marie.

Here's the story on my sugar, and I'm going to try to keep this really brief.

My fasting glucose is 82 and my A1C 5.2%. Both perfectly normal, BUT I suffer from Reactive Hypoglycemia so I know there's something bad going with the way my body responds to an influx of sugar.

Using a cheapie glucose monitor from WalGreens, I started monitoring my glucose at home. Having educated myself on what's normal and what's not, I would come to realize I definitely have a problem. My glucose spikes abnormally high after a high carb meal, and stays too high for too long afterwards. I was running my numbers by a diabetic friend as well as others on a diabetes forum, and the standard responses were "that's not good" and "you're on the spectrum."

So is this cause of my SFN? I don't think there's anyway of knowing, but given that something like 50% of all SFN sufferers are diabetic or pre-diabetic, I certainly think it's a possibility as does my primary care doc. If that is what's going on, then maybe I'm just genetically predisposed to SFN and that has caused me to develop it sooner than most.

Have you taken the Oral Glucose Tolerance Test where you drink the disgusting sugary drink and then have your glucose monitored for 2 hours afterwards?

[QUOTE=janieg;1119825]Sorry, just now seeing your response to me, Marie.

Here's the story on my sugar, and I'm going to try to keep this really brief.

My fasting glucose is 82 and my A1C 5.2%. Both perfectly normal, BUT I suffer from Reactive Hypoglycemia so I know there's something bad going with the way my body responds to an influx of sugar.

Using a cheapie glucose monitor from WalGreens, I started monitoring my glucose at home. Having educated myself on what's normal and what's not, I would come to realize I definitely have a problem. My glucose spikes abnormally high after a high carb meal, and stays too high for too long afterwards. I was running my numbers by a diabetic friend as well as others on a diabetes forum, and the standard responses were "that's not good" and "you're on the spectrum."

So is this cause of my SFN? I don't think there's anyway of knowing, but given that something like 50% of all SFN sufferers are diabetic or pre-diabetic, I certainly think it's a possibility as does my primary care doc. If that is what's going on, then maybe I'm just genetically predisposed to SFN and that has caused me to develop it sooner than most.

Have you taken the Oral Glucose Tolerance Test where you drink the disgusting sugary drink and then have your glucose monitored for 2 hours afterwards?

Hi jan, thanks for your response..
My fasting glucose is still in the 80's ranging between 79-89. Your A1C is lower then mine. 5.7 puts me in "Pre-diabetic" range, according to lab standards. My PC Doc disputes that.
I also have a One Touch Ultra 2 testing kit. I was testing, (still am) for after- meal spikes. My goal is to stay under 140 after one hour and under 120, preferably 100 after 2 hours. I have been doing this religiously for over 2 years and my numbers have been great. I eat good and exercise almost everyday (TM)

What I dont understand is ,you wrote My glucose spikes abnormally high after a high carb meal, and stays too high for too long afterwards. I was running my numbers by a diabetic friend as well as others on a diabetes forum, and the standard responses were "that's not good" and "you're on the spectrum." If your having 'high spikes" after a high carb meal, and stays too high for too long afterwards, how could your A1C be only 5.2? That is not in a pre-diabetic range. How long have you been having SFN pain for?

Yes, I had the yucky two hour glucose tolerance test. My number was 167. Normal is under 140 after the second hour. So I was told I have Impaired Glucose Tolerance (IGT). It's pre-diabetes. But it's been under control for over two years.

I think it's a possibility that my IGT kick-started this whole SFN thing. My PC and Endo don't believe this is the cause of my SFN. The Endo said my numbers were "too low". to cause this kind of pain. I do not agree with him!

I feel like my electrical system is out-of-whack. But as you said, there is no way of knowing. The only thing that throws me off track is when this started, I only had pins and needles in my calves and burning under my feet. Three years later, I have widespread pain, buzzing and burning all over my body , including my mouth , lips and scalp. I was hoping with tight sugar control, my symptoms would improve, but they didn't. I went on to get worse. Very disappointing and discouraging. So how does one explain this?
I'm baffled, confused, in pain and depressed.

Here are a couple examples of what my bg looks like after high carb meals, the second one worse than the first carb-wise.

94 pre-meal
131 (45 min after eating)
149 (95 min)
131 (2 hrs 20 min)
159 (3 hrs) retest a minute later 154
141 (3 1/2 hrs)
122 (4 hrs)
133 (4 1/2 hrs)

30 minutes post-meal: 166
1 hour post-meal: 162
2 hours post-meal: 166
3 hours post-meal: 148
4 hours post-meal: 128
6 hours post-meal: 82

Here are my OGTT results...shows the hypoglycemia

Fasting: 80 mg/dL
1/2 hour: 144 mg/dL
1 hour: 181 mg/dL
2 hour: 71 mg/dL

Why is my A1c only 5.2? The only thing I can think of is just irregular eating habits and not eating high carbs at every meal. I just really don't know. You can see from the readings above, though, how long it takes my bg to get back to normal. Someone has just told me these numbers likely indicate "slow gastric emptying." I guess I need to go learn about that now.

My SFN started on Nov. 13, 2013. How's that for a pin-pointed date? I'd had some minor things going on for a couple months before then, but it was like someone flipped a switch on me that day.

The thought of this getting worse is REALLY depressing, and I won't go down without a fight. I just need to keep looking for battles.