Hi,
I just joined today and had to tell you that i understand how you feel. Before I say anything else, I will say one word, "Lyrica". If your neurologist has not given it to you, request it. No guarantees, but it has helped me tremendously and enabled me to function.
For many years I have been in pain from a litany of auto-immune diseases, all of which gave me some form of pain which I was always able to handle. I developed neuropathy a few years ago but that too was manageable. Then one day I was walking and I suddenly doubled over from pain in my foot. It went away but a soreness lingered for hours. As the days went by, the pain became more frequent going from one leg to the other sometimes in both at the same time. The pain spread from my feet to my calves and was excruciating. It was also in both hands causing unbearable cramping. I saw my internist, my rheumatologist and finally a neurologist that I had never seen before. He listened to my symptoms, checked a few things and said he suspected it was idiopathic small fiber neuropathy. Idiopathic means, "We have no idea what's causing it!" A few days later he did a punch biopsy (sounds worse than it is) and confirmed the diagnosis.
At the end of my first visit he prescibed Lyrica. I had taken it once before for post shingles pain and probably due to the massive dosage I was given, had the rare side affect of alopecia-hair loss. You can imagine that I was hesitant to take it again but he prescribed it for just 50 mg twice a day. this drug is amazing!!!! With two days, the pain and heaviness in my legs had lessened to the point where I was able to walk easily and participate in life.
The disease has progressed and is now up to my thighs and my elbows and I have had to increase my medication to three times a day. My phamacist said the highest dosage is 300mg three times a day so hopefully the disease will never outrun the medication.
I would love to know if this drug works for you. Pain is a very difficult thing to deal with. I may be 66 (tomorrow) but I have had pain since I was 14 so I can totally empathize with how it is affecting your life. Good luck and I hope it works for you.

When I come to this forum and read here, I pray for all of you, including myself and anyone with this. It can seem so overwhelming when you first start this journey but you have to believe, have hope, and take control of your health.

I tell myself : I can be powerful or I can be pityful...but I can't be both.

I choose power.

Don't give up. Don't expect others or doctors to fix you. Keep a positive attitude, for me that is prayer and God. Believe you can make a difference. Most of all, make a daily choice to strive for better health each day. You have to work for it, it doesn't fall in your lap.

Goodluck!

Spoozie
Hi there, Im also taking 50mgs of lyrica 1x day. Today is 29 days. Still can not get any higher because side effects are bad.. It causes me strong lightheadedness, none reality feelings that come and go for a few hours and some depression. It dosent make me drowsy tho, I could use a good nights sleep. Its not doing anything for the pain yet. Im trying to hang in there and move to 2 x a day. Do you have any side effects? Its encouraging that you are doing so well on a low dose, 50 2xday. I hope I can overcome the side effects and it starts working for me soon..

Yes, my blood sugar is always very good, I have never had a high number. I test it to make sure I do not have spikes. I learned which foods to avoid. Potatoes, rice, processed sugar, processed carbs. I test one hour after eating. That is the best time.

These and other supplements help in many ways. I do all I can to help the nerves heal and keep my body healthy. I keep the immune system healthy also.

I do not have low BP. It goes up and down.

Autonomic Neuropathy is not hard to figure out if it is severe for sure. Everything automatic in the body is affected. Digestion, nausea, tachycardia, orthostatic intolerance, blood pooling, severe lightheadedness, dizziness, on and on.

Hi Sally thanks for responding,
you said yes, does that mean you do have diabetes and that is why you are testing, or do you test as a 'precaution"? I do not have diabetes , but Im 'prediabetic" (a1c was 5.7, GTT 167), Endo says results are not high enough to cause nerve damage, so it didnt cause my neuropathy. Mine is still "idiopathic" (hate that word)! what caused your neuropathy? sorry for all the questions, but im trying to understand about the vits & supplements. I take most of those that have been recommended by people on here. Are they just for diabetic neuropathy or do they help with other neuropathys? They dont seem to help me yet anyway.: also, you said you have/had dysautomomia, your blood pressure is afffected, is that whats casuing it to go up and down?

My sugar is normal. No diabetes. I test to keep my nerves healing. Nerves are sensitive.

Thankfully, integrative doctors know what sugar does to the body. SO odd that some doctors think you need high numbers. It is not helpful at all for them to say that.

I had surgery and also had a separate problem and a doctor sadly gave me Levaquin. The surgery stopped my hormones so that was a double whammy. I have good doctors now, balanced bio identical hormones. It is the full picture. Supplements, diet and careful excercise.

The supplements and diet help many people if the right dose, brand etc are given. No one is helped by the same thing. Everyone is different.

The Dysautonomia/POTS causes my bp to go up and down.

You need a new doc. fasting of 167 is NOT ok! and there have been those here at neurotalk, that have had sx and not YET dx with DM and went on to improve with better diet, ie lowered the sugar/calories. won't hurt you, may help. Do you take benfotiamine?

Hi Pabb
Thanks for your response..The 167 was the result of my "GTT" , I should have wrote 2 hr gluocse tolerance test , not my fasting. My orning fasings are still normal ,80-91
What does "sx" mean?what does DM mean? I dont understand your sentence.
Yes, I take 300 benfotiamine 1 x day. Do you think that is too much?I do eat a good diet with no sugar, low calories and low carbs. I also take 2000mgs methycolocambim (b12) (sp) , 800 mcg folate, 50 HPH (b6), 400 Mag, Vit D ,2000, 1200 fish oil, RLA, AL Carnitine. I started taking most of these supplements nov 2012, they help with the burning under my feet, but I sill get bad tingling (pins & needles), buzzing, painful sensations all over my body. I started taking 50mg lyrica, 1xday, 4 weeks ago, can not go up in dose because of side effects. any suggestions would be appreciated..