I have full body neuropathy as well, and it did progress relatively rapidly over a few months. It did stabilize, though, and eventually improved in some regards.

This was something I read that kind of made me feel better that no cause could be found. Kind of.

http://www.hopkinsmedicine.org/neuro...europathy.html

Small Fiber Sensory Neuropathy

Small fiber sensory neuropathy (SFSN) is a disorder in which only the small sensory cutaneous nerves are affected. The majority of patients experience sensory disturbances that start in the feet and progress upwards. These patients have what is called a length-dependent SFSN. This type of SFSN is often due to diabetes or impaired glucose metabolism (i.e. early or pre-diabetic state) and may progress to typical diabetic polyneuropathy.However, in a significant percentage of patients, no underlying etiology is found and the patients have idiopathic SFSN. A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic.

Interesting because my pain started in the hands and not the feet but I did read it can start that way as well. I was pre-diabetic for several years prior to the heart attack but the endocrinologist said my levels were not that high or for long enough to cause SFN. Of course she could be wrong. I would hate to think I could have avoided this had I done more to bring my glucose levels lower.

Were you pre-diabetic before gettting SFSN?

Hope you find some relief.....

Cliffman

Hi Cliffman,

I'm so sorry that you are suffering with this.

I don't have any experience with SFN but I will keep you in my prayers for your doctor to find something to relieve your pain.

No, and by American Diabetes Assoc. standards, I'm still not even pre-diabetic. I believe by American Assoc. of Clinical Endocrinologists standards, though, I'm just over their minimum threshold to be considered so. That's based on one A1c test that was over, all my previous ones were under.

I suspect like everything else, how someone's body responds to elevated glucose levels is very individualized. Some diabetics never get neuropathy and may have more inherent neuroprotective capabilities. Other people who aren't so lucky develop neuropathy years before a diabetes diagnosis.

I don't think I had typical diabetic neuropathy onset, though. I woke up on Nov. 13, 2013 feeling like I had electrical current running through my legs. Over the next couple of months, I felt slight sensations in my arms and hands, but more pronounced ones in the temple area of my head and my scalp. Now I just feel weird stuff all over. Thankfully, the horrible nerve pain I had in 2014 has mostly subsided. I'm still subject to the burning in my legs and feet when I flare, though.

I sound like a broken record on this, but treating yourself like a diabetic diet-wise will certainly do no harm and may help. Whether it's the cause or not, high glucose levels are a known insult to your nerves. Maintaining healthy levels will give them a break.

Thank you Vintagewine ...it is very kind of you to wish me well. I hope the same for you and glad to hear you don't have SFN.

Cliffman

Cliffman - just getting back to your original post. No, it is not common to have a rapid spread to body-wide symptoms, but based on the posters here it does happen occasionally. However, it seems that in every case I've read about, the rapid onset cases seem to peak out, then it gets somewhat better over time. On the other hand, the cases that come on slowly seem to continue to progress over time.

Of course, I'm just generalizing - this disease is unpredictable and literally anything can happen. The rapid onset cases are brutal and hard to cope with at first, but in some ways they may be better in the long run than the chronic/slowly progressive cases.

All you can do is cope the best you can. I know it's difficult, but try to get some exercise if your body will tolerate it. Look at your diet, and make some improvements if needed (sugar seems to be a big trigger for many - even if they aren't diabetic or even pre-diabetic). Stress reduction is important, although difficult under the circumstances - meditation or something similar might help. And consider a supplement regime - there's tons of information on this site about all the different supplements; start with the basic vitamins and move out from there. And of course, work with your doctor on finding pain medication(s) that work for you.

(I know you've probably read all these things before - I just wanted to re-state them. Although my case is a bit different than yours, I too was in a state of total panic/confusion when my symptoms took off. You can do hours of research and come up with a ton of information - but I think the things I stated above are basics of dealing with PN of unknown cause. (Ideopathic PN 101 if you will)

Adding to the antibiotic list:

NITROFURANTOIN/Macrobid

Took for recurrent UTI's and never put together that it was causing rapidly spreading severe neuropathy. In just a few months it spread from feet to hands to full arms and legs with very high levels of pain,.. all the while more UTI's and more Microbid.

It is a nightmare..

Max dose gabapentin did not help at all. Now trying Lyrica.