Originally Posted by spoozie

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.

Originally Posted by spoozie

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.

Originally Posted by Sallysblooms

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.

Originally Posted by Marie33

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?

Originally Posted by pabb

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?

Originally Posted by Aussie99

Im sorry you have to go through this so young. At 19 you should be more carefree. But your not alone. Millions of people have this affliction for various reasons, and hating yourself is a useless emotion. Hindsight is always 20/20. You were not to know, and who's to say that even if you took better care of yourself it wouldn't have happened anyways.

There are meds and supplements to help ease the symptoms and one that has worked for me is ALA. read up on it by googling it with neuropathy as your key words. Speak to your Doctor about it before you take it. It has lessened my affliction by at least 60-70 percent. I think you are in pain now and feeling hopeless, but there is hope. Be strong if you can and get a support system going.

Originally Posted by Marie33

Hi Aussie
Do you take ALA?. I read on here I should take R lipoic acid. I bought 100 mgs. I have to split it in half , 100mg makes me jittery. I also take AL Carnitine 500mg. what are your thoughts on the ALA vs RLA for SFN? Thanks