Hello

I am new here and would like to see if someone can help me. The past 6 months have been hell for me and nobody knows what is wrong. I will try to keep it brief. I hope someone can help shed some light on what is going on.

2 years ago I hurt my lower back exercising, but I've had back issues for about 20 years. Had seen Dr's and they told me I had DDD. Had left leg Sciatica but it went away. Well after a sore back for 5 months it came back. Left leg started to hurt and as the pain eased up my foot went numb. (heel and outer part, consistent with S1 nerve) Had MRI's and they could not really see anything serious. Further tests showed a moderate foraminal stenosis on L5/S1. After 1.5 years of no change, my right foot started to get strange sensations, like feather brushing across foot. Then it started to slowly go numb. (No back pain or injury) During this time I was convinced I have some compressions on my nerves in lower back so I start to do home decompression. Hanging on pull up bar to decompress spine. Also purchased a machine called NuBax Trio to do the same. My arms start to hurt from all this and I started to get tingling and numbness in fingers/hands and forearms. I stopped doing this as I thought it was causing damage to my arms. Things slowly progressed. Feet continue to get number in the ball of foot. Now getting Sciatic pain down both legs and it's very hard to sit or lay down on my back.

I also notice much more heart palpitations (had them for years), GI disturbances, and twitching all over my body. Start to get tingling in my face and scalp. I start to get light headed and have fullness sensation in hears, and tinnitus. Went to ENT and hearing is great, no issues with ears. I notice any pressure to any part of my body hurts, if I put pressure on any nerve it hurts. Arms, elbows, knees or legs. Muscle strength seems to be fine, but my legs do feel weaker and tremble and feel heavy. Had NVG and EMG on right leg and arms and were normal (Left leg was slightly abormal prob due to S1 damage)

Also get burning sensation on feet and hands, and they turn red and burn when it's hot and turn white when it's cold. Feels like I have slight sunburn on my whole body. Seems it's Small Fiber Neuropathy from what I have been reading. Seems to be affecting my whole body. Slight numbness everywhere.

Been seeing many doctors and not getting anywhere. They just are no digging into it enough and rush me out saying I don't have Neuropathy. Maybe it's due to it being so recent that it's not bad enough.

I read that Diabetes can cause these symptoms and I didn't even think this might be me, but I dug into it and did some tests. Fasting glucose was 97, (and my FG was going up the past decade) and was told I was fine. Had a Hg A1C and it was 5.7%. Prediabetes range! Got a glucometer and did some testing, and did a Impaired Glucose Tolerance test. 3 pieces of Pizza and a Pepsi and I shot up to 170 in 30 min! Then it slowly tapered down over 3 hours. Was over 140 for 2 hours and by the 3rd hour finally got to 108. During test I felt sick, dizzy and light headed, feet and hands were burning. Mind you, this is after I lost 20 Lbs and started to eat healthy and go gluten free too! I really think I was worse before if I am honest with myself. Ate lots of carbs daily.

So that is my story. Not sure what to think. Any help or insight from anyone would be great.

Hello tj71: I'm sorry I cannot really offer any suggestions as to what may be going on with you. But I thought I would simply welcome you to NeuroTalk. Hopefully other members may have some insights to offer.

You & I do share a couple of similar problems. I have a ruptured disc in my lumbosacral spine that impinges on the sciatic nerve. So I have sciatica. I also experience heart arrhythmia. I have tinnitus (& Meniere's Disease.) And I experience kind-of a "low-grade" sort-of trembling feeling throughout my body 24 / 7. It has been suggested to me that this could possibly be due to a magnesium deficiency. But I don't know. I haven't sought any treatment for it. I'm an older person. I avoid doctors as much as possible.

Hi tj71

Welcome to NT.

By chance I just read another post by Mat52 which contained a link to an article relevant to your query. Here's a direct link to it:

The Fire Within

This may be useful to help convince your doctors of the need to investigate further - or if you're near John Hopkins go directly there. It's important with SFN to find a doctor who is familiar with the diagnosis and treatment - if you can screen them before making the appt. it might save time and frustration.

If you want to know more about other NT members experiences with SFN then you can use the search tool on this site (needs to be more than 4 characters - so search Small Fiber Neuropathy rather than SFN).
Feel free to come back and ask more questions or share your progress. all the best for finding some answers.

Welcome tj71, but sorry you're here.

I don't have any great advice on helping get to the bottom of things, but I do have some advice on the blood sugar thing having been through that aspect of it.

There's no debate that high blood sugar is an insult to nerves, but no one knows for sure at what point the damage starts occurring. After much reading and research, the only number I found referenced was 140. My response to that was modify my diet to keep my post-meal glucose under that to be safe. I actually try for 120. I don't think blood sugar is the cause of my neuropathy, but spiking it the way I was when I ate a lot of carbs certainly wasn't helping the matter.

Hope you have some luck finding the cause soon.

Thanks, yes that is what I am finding too. 140+ even for short periods of time cause damage. Don't have to be a Diabetic in the 140+ range all day long. I wish I knew for sure if that is what is causing my nerves to get irritated and inflamed. I am convinced that it is also causing issues with Sciatica and also Carpel Tunnel symptoms in my case. They call it double crush syndrome in these types of cases with high blood sugar.

you could have more then one thing going on. It could still be your lumbar causing problems in you legs and pre diabetes effecting you as well. In this game it doesn't have to be just one cause. I second the John Hopkins recommendation if that's possible and if not definitely another doctor.

Can someone who knows let me know if Diabetic Neuropathy can cause nerve pains or inflammation all over the body when you press on the nerves? I know it usually starts in the feet, then goes to the hands and the rest of the body, even the eyes. But I seem to have a big problem with pressure on nerves.

I am having a very hard time with sitting for more than 10 minutes. The pain in my legs gets bad (Sciatica) and my feet tend to burn more and get number! When I get up or walk it diminishes by a good amount. I also have to lay on a yoga mat to relieve the pressure. I also notice at times when sleeping if I lay on my sides my arms hurt and get numb, even on my back if I press on the elbows. So it seems my nerves are irritated.

I know that there is this thing called HNPP that is a Nerve Pressure Palsy, but not sure I have that as I never had issues like that until the past year or so. I did notice it started on my wrist where I wear a watch, if it was too tight it would hurt a little. Also noticed my wrists would hurt doing push ups several years ago, then it went away. But I have had a bad died for about 20 years now so who knows how long I have been in a prediabetic state!