Newbie with SFN and questions........
 

Well, I just finally got a diagnosis of idiopathic SFN from a neurologist after going to my regular doctor for 3 years with no diagnosis. I requested to go to a neurologist because I knew something was wrong, not to mention the PAIN. The whole thing started when I turned 40 and woke up one day to aching in both my legs (shin area). Well, you know the drill, I also have tingling, burning, stabbing, weirdo feelings, blah, blah, blah. this now affects my feet as well. The neurologist has me taking Neurontin 400 mg at night and 300 mg in the morning. We are slowly increasing this dose because I told him I was still in pain. Now to the questions for you "professionals"..........
1) I realize I am on a wimpy dose of Neurontin. How much do you think is needed to be comfortable? Just an average from your experience.
2) What about this evil aching pain? any ideas on how to calm that down?
3) I do not feel like exercise. Should I push thru anyway? Would it help?
4) Any other ideas. I have been in pain so long. Just glad that I know what it is................
Thanks to all for any input. I look forward to sharing info. with you.
Janet

Hi welcome to the boards. I am sorry you are in so much pain. I am on neurontin 2700 and started very slow to increase. My pain doctor said some people need more then that for relief or even a combo of meds similar which I am on. I have had little relief from these nerve meds but know people who have had better results. For myself my doctors told me I had to get moving and do the most I can. Now you may be different. What did your doctors say? When I started off it was very slow walks for 15 min then increased every few weeks by 5 minutes. I still have lack of range of motion but it is better then it was. I think slow and steady to get back into doing more is better. When I went to the Cleveland Clinic pain program they overdid it with me and it made me so fearful cause the pain got so high. Some people do better with pool walking or other type of activity. Do you take baths? Some people feel epsom salt or just a warm bath helps. Some other ideas is self help tools such as diet,supplements,ways of coping etc. These things may not directly take away the pain but help to feel better in other ways. I wish I could offer more.

Welcome to NeuroTalk, Janet.

Here we look for PN reasons, that may be overlooked by your doctors.

So can you tell us some more about your medical testing, what drugs you used in the past and presently, all of them, not just for the PN symptoms.

Sometimes things get overlooked, or your doctor may not be up on the newest PN research.

Hi Janet & welcome.
You are taking 700mg of neurontin per day.
Most don't feel any relief until between 1800 and 2700 or higher.
I was at 4200mg/day when I switched to 600mg Lyrica/day.
1000--500mcg of B12 on an empty stomach could help with the pain, but it isn't an immediate effect. Pain should gradually decrease over time (6 months or so).
Exercise circulates the blood to the areas that need it, so it couldn't hurt you to exercise, but expect it to hurt after your workout. Exercise increases blood flow and the nerves fire with this increase, and your brain will interpret this as pain. Getting better is as painful as getting worse, for some of us, I'm afraid.
Supplements help- B12, ALA, CoQ10, Folic Acid, Fish oil, and others are a good way to reduce symptoms and pain.
I take 300mg/day of Tramadol (Ultram) along with my Lyrica, to reduce pain.

Thanks for your reply. Like a dingbat, I forgot to talk to the Neuro about exercise. I will on my next visit. Yes, I love to take LONG warm baths. I am going to take you up on the epsom salt idea.

I have been tested, and re-tested over the years (since this started) by my regular doctor. Glucose, B12, Vitamin D, Electrolytes, Liver and Kidney function, thyroid, etc. My vitamin D was low and we corrected that. When the doctor suspected that I might have RLS, he had my ferritin (iron stores) level checked....it was low....I have been taking supplements and have it in good shape now.
The Neuro sent me for an MRI of my neck and back....normal. He also sent me for more bloodwork.....sed rate, ANA, bunch of stuff I do not even know the names of. All came back normal except ANA. He sent me for the sub-sets of that and they came back normal. I later found out that my mother and sister also test positive on the ANA. Must run in the family. Doctor said some people just test positive but do not have an auto-immune disease.

Meds I take................

Toprol XL - 12.5 mg / day.........mild high blood pressure
Tandum Plus - Iron supplement to raise ferritin levels
Simvastatin - take 3 x per week to lower cholesterol.
Centrum - vitamin
Vitamin D - vitamin
Neurontin - 700 mg per day

Note: I did not start taking the simvastatin until long after this started, so it is not the culprit. Also, I only agreed to take 3 x week because I heard it can cause PN.

Thanks
Janet

Thanks for the info, Bob. I really appreciate it.
Janet

If you decide to take a statin, you must supplement with CoQ-10.

Statins block the production of CoQ-10 that normally occurs in our livers to keep us normal. The enzyme that makes both CoQ-10 and cholesterol is blocked by statins.

If you become low in CoQ-10 your mitochondria cannot make energy properly for your cells, and various bad things then happen as a consequence. Heart effects leading to congestive heart failure, high blood pressure, angina, rhythm problems, immune problems, gum disease and fatigue are results of low CoQ-10 levels.
You will need at least 100mg -300mg a day of this, and choose a form with enhanced absorption listed on the label, as this is not easily absorbed from supplements.

Simvastatin is the most lipophilic statin, which means it passes into the nerve tissue easily...hence it is suspected of causing more damage in the brain and nervous system. New studies show it blocks the natural repair processes called remyelation of the axons of the nerves.

I have a + ANA. One of the first symptoms I had was what I thought was shin splints. They are treating me with IVIG which I think keeps me from progressing quickly, but, hasn't been miraculous. Beats nothing I guess.

My next question is do you have dry eyes, and other autonomic symptoms?

I meant to say 1000 to 5000 mcg of B12 a day. (NOT 500)