It has been a while since I last posted but soooo much has been happening. First the good, then the bad. I always try to start off with the positive thoughts first!!
1.) After my visit to CC and the diagnosis of SFN my doc called and started me on 600 mg of alpha lipoic acid. That was back in the first week of August. I am still taking the neurontin 300 mg in the am and 600 mg in the pm. (I was up to 2400mg and have been able to cut back to 900mg.) I still use tramadol 50mg, usually once per day. As for now, the numbness & hyperesthesia have decreased by about 75%, which is a HUGE improvement. The burning is still there, although it is better too. Seems if I have pressure in one area too long, ouch.......my nerves let me know it. Also, I get some zingers every now and then in my fingers. I still have the sensation of my cell phone vibrating but hey, compared to what I was living with.....praise God.
2.) I am just finishing up my 4th week on my new job. I was commuting to Indy every week but finally decided I needed to be at home. While I have worked for this company before, after a year hiatus, it is a little different being back. My staff are unaware of my diagnosis and I am undecided as to whether I will share this with them or not. Guess if things start going "south" I will be forced to but until then, I think it is best left unsaid. I was suppose to go back to CC in September but my health insurance isnt effective until November so I will have to wait. The doc there wants a gluten sensitivity done and just a general follow-up.
3.)My main complaint right now is the burning of the hands / feet but it is so minimal compared to what it was so I can live with it. But when I get up after a period of inactivity, it feels like I am walking on wooden feet. It is so darned painful for about the first 5-8 mins and then I am good to go. Don't quite understand that one........any suggestions?
4.) My son left yesterday for bootcamp. He is my baby and it was very hard to let him go. I cried like a baby. I guess if that doesn't cause a flare-up, nothing will. I know there are a million other mothers out there who are in the same boat, but just knowing that didn't stop the tears from falling. I pray that God will keep him safe and bring ALL of our troops home.

I am trying to get at least 8 hrs of sleep, I eat pretty healthy and I was exercising but that has dropped off dramatically. I NEED to get myself moving again. My prayer is that each of you can experience some relief and that your quality of life improves with each day. I thank God for the blessings he has bestowed on me and if I flare up tomorrow, I will be grateful for the past 2 months where I was almost pain free. Gotta go meet my father in law for dinner. He will be leaving for Florida soon. Bye for now.........

Thanks for the update....I am glad things are improving for you.

Remember PN has ups and downs. I don't know why, but it does.

Getting out of the long commute must have helped some.

Keep at it! The good news is wonderful to hear.
I have been trying to get my 30 min of excercise a day via swimming.
Finding a pool with a lap swim that fits my daily routine was a challenge but I have a system down now. Tonight I pushed myself pretty hard in the pool, endorphins kicked in and it felt great. Pain level right now is probably a 1.

One has to wonder about the outgassing of volatile organic compounds found in most new cars today. And this continues for long past the new period! That film on the inside of the windshield? That is what you are breathing....

More here:
http://amarillo.com/stories/072801/whe_outgassing.shtml

These fumes may be causing some of your PN... Let your car air out before driving in hot weather too!

Glad to hear you are doing better. Dont underestimate the stress of having a child deployed! My son was deployed to Iraq 6 years ago. That was my worst ever goodbye. Now a daughter is going for her second trip to Afghanistan. I am less stressed now than I was 6 yrs. ago, but, it is never good.

Take care of yourself, and my thoughts are with you and your son.

The ups and downs are what scare me. It always seems like when it comes back, it comes back with a vengenance. Some days I think it is on the return and then after a good night's sleep it seems better again. I try not to dwell on it......just make the most of the good days. The long commute was getting harder and harder each week but it is amazing, we do what we have to because we have to!! Thanks for the well wishes. I will keep updating periodically.

The bummer is when you make advance plans to do something, especially with others- and wake up that morning feeling so bad that you dread the rest of the day, or have to cancel because you are feeling so bad. No one understands this, and I have lost 'friends' and acquaintances over the years due to this. They gradually drift away and don't call anymore.

Yeah, me too with the ups and downs. Finally found a job (temp) that's a long drive and probably lots of overtime up front. I'm dreading waking up on my first day this Thursday to burny, stabbing pains, then driving the long drive (about an hour), and having to act like a happy, chipper person when I get there. Well, it's time to suck it up, I guess.

It does help that there are people here who understand, though.

Thanks kpRN for your many posts. I have been able to empathize more with you than any other stories I have read. I have idiopathic peripheral neuropathy since 2006. I worry that not only is it a forever condition without relief other than drugs, as well as it progressing. I am 55 years/male.

The reason I would like to reach out to all is my neurologist is supportive of me going to The Cleveland Clinic for further testing. But as the original post implied, is it worth it? I will have to pay out of pocket expenses and they do not seem to be receptive to utilize the testing I have already recently have had done.

The disease has robbed me of my active life and by dinner time I'm ready to take another drug, just so I will sleep and escape the torment.

I have been thru all the same drug you mention including now Lyrica and maximum does of Tramadol thus creating cognitive challenges.

I don’t mean to come off as negative and poor me, but I post this with the hope that there is help somewhere to be found.

If you had it to do over, was the trip to The Cleveland Clinic worth it?