I know that "pins and needles" indicate neuropathyoften due to uncontrolled T2 diabetes. I used to have pins and needles 4 years ago before my T2 diagnosis. But my diabetes is under control with A1c from 5.1-5.5 the last 3 years.

But I've been noticing certain painful sensations in my toes at night when I'm about to fall asleep. They're not like "pins and needles" but still seem to be neurological (i.e., painful feeling not due to damaged muscles or tendons). They're painful, stinging and singeing type of sensation and they seem to emanate from the small vessels of my toes and feet. Does anyone experience this?

Now, I also suffer from Sjogren's and my endo did remark that both diabetes and Sjogren's may have contributed to my neuropathy. I was diagnosed with peripheral neuropathy (cause attributed to T2 diabetes) 3 years ago.

But I felt that since I control my BG very tightly, I've stopped the progression of further neuropathy. Anyone have any idea what may be going on? Does the stinging sensation seems to indicate continuing progression of neuropathy (whether BG is well-controlled or not)? They're not extremely painful but definitely painful and stinging and last about 30 seconds or so. In other words not that long.

You don't eat sugar or bad carbs, right? Do you take supplements also? It all works together.

For me, I had pain as my neuropathy healed, would not last long. Not all the time. Doesn't happen anymore. Not sure if it is the same as what you are talking about.

--can have a whole host of abnormal sensations: burning, stinging, aching, electrical jolts, feelings of something touching the skin when there's nothing there, weird feelings of heat and cold without obvious sources, numbness . . .it all depends on the extent and kind of damage to the nerves and how the brain is interpreting the abnormal nerve firing.

It is also true that nerves that are healing, in the sense that nerve growth cones are fighting through other tissue and trying to hook back up to their efferents, may well produce all sorts of unusual sensations that can be hard to distinguish from nerves that are continuing to undergo a damage process. In such cases, often these parastheses recede slowly over months as the brain gets used to the new firing patterns. It's why those of us who are prone to "flares" or wide variations in symptoms like to keep diaries of our symptoms--it's often hard to notice the long-term pattern except in retrospect.

I find it very difficult to discern whether the pain is due to some healing or just getting worse. For about 9 months or so, i have been taking Benfotiamine ( 2)150mg am and p.m.)for a total of 600mg's a day. Also taking Stabilized R-lipoic acid 100 mg (one a day, two seemed to be more anxious) and MethyCobalamin Vit. B-12 2mg's.

After a month or two; started feeling better; burning and legs better, etc.; then the last few weeks; my legs are so stiff and painful when walking; especially when first getting up from sitting position. I am not a couch potatoe so do as much as possible...laundry, cooking, light cleaning, etc.; but the pain is really getting to me. I had L4-5 fusion and crushed nerve 5 years ago. Do still deal with spine pain; but noticed the legs are really scaring me and concerned about ability to continue walking (do use a cane).

Then comes....could this be healing...or is the progressively getting worse? At first, I tried to convince myself maybe healing was going on; but now the circulations and stiffness is really bad. How do I know the difference??


(Ger)

The neuropathy can certainly progress just from the Sjogren's, regardless of whether your T2 is under control. You should follow-up with your neurologist about possible skin biopsy to confirm/deny small fiber neuropathy. IVIG might be a suitable treatment since you have Sjogren's.

Very well put. I have recently experienced almost a " golden age" of time (about 2-1/2 months) when my symptoms diminished significantly across the board. I'm now into my third week of a flare with tingling fingers, mildly numb foot soles, funny throat swallowing feeling, tiny and very sparodic pin pricks, etc. This flare is not bad compared to previous ones in the past. I'm hoping that I'm in a healing phase.

I keep taking the anti-inflammatory supplements along with others hoping this will help in the overall cause.

I agree that the diary is a great tool that helps us judge with more accuracy how our bodies react over time to PN.

Unfortunately, that's my conclusion also. I just googled Small Fiber Neuropathy and that seems to be exactly what I have. I'm also beginning to feel my joints cracking and I fear it may be RA. So more connective tissue autoimmunity may be involved.

I take 600mg Alpha Lipoic Acid, 5-10mg biotin. Used to take 1300mg Evening Primrose Oil and 500mcg B-12 but stopped them (last serum B-12 test = a bit high at 1600). Honestly, I don't think taking any of these supplements improved my neuropathy (I do know that ALA proved to be helpful only at very high doses in clinical trials). Perhaps they're helpful in stopping further deterioration. So I'll look into taking Benfotiamine.

My induction test showed neuropathy mainly in the feet; the hand numbing that I experience seemed to be due to my lifting weights without gloves. At the time, my endo was surprised since I had only been dx'ed with T2 diabetes a few months prior. But a few months later, I was dxed with Sjogren's. Nothing else so far but always on the lookout for more autoimmune conditions, since they come in clusters.

I have since incorporated a vigorous HIIT exercise routine (1 hour every other day) with weights for my upper body, which has kept me in terrific shape (I'm a guy @5-10/160 lbs. & 10-15% body fat) Because of the neuropathy related to my ulnar nerve entrapment, I've eliminated all "push" type of exericses and only do "pull" type of lifting: that is, no bench presses but shoulder pull-downs; no shoulder presses but arm curls. I'm thinking starting a similar exercise routine designed for my lower body to combat neuropathy there. Anyone experienced improvement upon doing "slow-burn" type of reps with lower weights -- something you can do 12 or more reps per set? No big muscle but improved circulation, fitness, muscle tone and definition?

I also go up and down the stairs 2x a day for 8 minutes which lowers my blood sugar terrifically on days I don't do my upper-body HIIT. I'm thinking about doing this everyday and alternating HIIT for the upper and lower body -- i.e., HIIT everyday. (I don't do any running or elliptical.) I know this will further improve my BG management; I'm also hopeful this could slow the encroachment of polyneuropathy. Anyone with experience in this area ? It would seem that the increased blood flow and circulation would retard or perhaps induce some degree of recovery from neuropathy?

--muscle building weight lifting can be problematic for someone with neuropathy, especially if the neuropathy is attempting to heal and nerve growth cones are fighting to go through/around tissue; increasing the size of tissue, or shifting the position of muscle-supporting tendons, might actually compress nerve tracts.

One should also consider the "double crush phenomenon"--nerves already insulted form one condition, such as diabetes or autoimmunities, tend to be more prone to compressive effects than those of "normals"--and when both of these things happen the symptoms tend to be more than "the sum of the parts".
(It's one reason why, for example, diabetics with neuropathy tend to have more symptoms with spinal radiculopathies than those without it.)

What do u think is the best form of exercise? Running, cardio on the elliptical? "Slow burn" exercises with lighter weights don't seem to really build muscle but rather muscle tone -- is that still problematic for someone with neuropathy?

I try to walk as much as possible, ideally more than 3 miles per day. I also try to do 15-30 minutes of simple yoga stretches and balances.
I have hereditary small and large fiber neuropathy, the nerves are dead or dying in my feet, legs, hands and arms, and the muscles waste away as the nerves die.
I hope that the walking helps to preserve what strength I have left. I know the stretching improves the muscle contracture that accompanies this, and simple things like standing on one leg have really helped my balance problems.

Neuropathy seems to be highly idiosyncratic and what works for one person may not work for another. I know getting too tired out is not good for my condition, but I love to walk in the woods so much I would do it even if it were of questionable benefit. Quality of life is an issue too.