New-Type 1 Diabetic w/ Neuropathy. Help?
 

I am in need of help.

I am 23 years old with Type 1 Diabetes. I have had it since I was six, and to be honest, after high school I did not take good care of myself. A year after high school, I met my current husband and started taking better care. I developed Neuropathy a year after us dating, and I saw my PCP. She gave me amitriptyline. That gave me horrid nightmares, night sweats, so we tried Cymbalta. That was even worse. Nightmares, paranoid thoughts, depression. So then we tried Neurontin. That, oddly enough, made my blood sugar spike HIGH, like in the 300-400 area. I was then given Lyrica, which made me gain A LOT of weight, which wasn't very good for me. During that time I was unemployed because of the neuropathy, and kept the weight on. Now I am about 50 ponds heavier, the biggest I have ever been in my life, and I can't get rid of it. After finally being able to see a neurologist, he tried Topomax. I was on that for a while, being told it was my only hope. Of course, that didn't work either. I stopped with the medication for a while, dealing with the up all night, not being able to walk or run barely at all, not being able to exercise properly, not even being able to stand up for more than a half hour at a time. The burning, the tingling, the pins and needles, the heaviness, and worst of all the SHOOTING, stabbing pain from my toes up to my knees over and over again. Finally, the doctor gave me the lowest dose of Vicodin, but only 15 a month. I had to spread it out so far, and it barely dulled the pain. After only a couple months, he stopped giving it to me. It turns out that I, apparently, live in a sad area where painkillers are the "thing" to do. All these really young kids popping pills, and I, sadly, fit the age group. I didn't like my neurologist because of his lack of knowledge. He didn't help me at all. I went to my endocrinologist and he gave me Mentax, I believe it's called. And my insurance didn't cover it, and the free samples he gave me did nothing. Like I said, I put up with the pain for a while now, and I finally have a neurologist appointment tomorrow with a new one. But once again, I am up at 2 in the morning because of the constant burning.

I am wondering if ANYONE has had the same kind of situation going on, where nothing but painkillers worked? Even the lowest does of Vicodin barely did anything for me, but it was the only thing that gave me ANY kind of relief. I've tried creams and lotions, even the kind where that certain "pepper" was suppose to help, and nothing. Like I said, I am the heaviest I have ever been in my life, and it's so hard to exercise. Working is tough, too. I can't find a decent job, let alone one that allows me to sit. I am almost scared to approach my neurologist tomorrow to tell him that Vicodin was the only thing that helped me. I am so young, I don't want anyone to think I am one of those pill poppers! I am so afraid of what these doctors think of me, especially when I am in this kind of area where that thing is common. If anyone has any home remedies, suggestions, meds I should ask my doctor for, or even how to approach him about the painkillers, please feel free to post something. Nothing has worked and I am so desperate. It even gets hard to walk from the bedroom to the bathroom at night. Any kind of information would be useful. Thank you to all the kind souls out there willing to help a young girl in need!

well, you have learned the hard way....darn! If you can, try thiamine supplements and B12 and folic acid/folate. The benfotiamine form of thiamine might be better, but is more costly. Watch your diet, and move as much as you can. Keep yourself hydrated

i wish i knew more so i could help you.
i have some thoughts on your post.

i had severe pain issues too. i had several drs, all who had known me for yrs.
plus, i'm an RN and that should have made me a credible person. my neurologist had a Ph. D. in pharmacology and still wouldn't help me.

i found a pain dr thru a local rehab hospital. i just called and asked if they had a pain dr and got a referral. he really helped me a lot.

the other thought i have is to ask your local hospital if they have a diabetic class. sometimes listening to an instructor who's an expert can give you some other ideas to deal with the wt/diab.

now i shouldn't be the one to talk because i've been struggling with my wt and i have type 2.

stay in touch and let us know how you're doing. don't give up. help is out there.

Greetings!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways. Check out the following forum for some assistance:

http://neurotalk.psychcentral.com/forum53.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

PN
 

I really feel for you. You shouldn't let your age or the stigma of the types of drugs you need stop you from getting the help and relief you need. You have PN and you need treatment! Don't be afraid to be frank with your doctor, let him know your suffering and need releif. Tell him what you have taken in the past and what has worked and what hasn't worked. I take vicodin 7.5/750 four times a day and I also have the fentayl patch at 75 mg. I take doxopin at night to stop the itching and tingling. I also take Neurontin at 2400 mg a day. Its taken a long time, and a good doctor, to get the right mixture of drugs to get the pain, stabbing and tingling under control. The drugs did cause me nightmares in the begining, but they went away. I've taked to others with PN and almost all of them are on vicodin or another similar drug to kill the pain, and alot of them are on higher doses then I am! You need to find a doctor that is understanding of PN and is willing to work with you to get you relief. Your not alone, just look at this board-there's a lot of us out here. :o

peripheral neuropathies
 

I'm not sure how much help this will be... I'm 52 and have been diabetic (type 2) since 2002. The medications I was taking helped me gain enough weight that I really became concerned. So I started looking for options. Three years ago I had gastric bypass surgery and lost 70 lbs. But my sugar was still not controlled and I finally discovered that the Seroquel that I had been given for sleep (because I have tried everything else!) was known to increase blood sugar and even cause diabetes!

This year everything started to get worse... the pain in my feet, the aching all over, falling down for no reason. My PCP referred me to a neurologist. He's not a warm and fuzzy person, but he seems to know his stuff. I had a bunch of tests and the results were that I have "moderate impairment" of the peripheral nervous system as well as the autonomic nervous system. I haven't quite figured out what questions to ask.

Pain is always a problem. Because there is such a phobia about drugs and addiction, the doctors are watched by the DEA to make sure they're not prescribing too many opiates, it makes it difficult for patients to get help.

I am also one who responds best to opiates, but it is difficult to get them. I don't even need that much, because the really painful stuff kind of comes and goes. I've gotten past the burning and stabbing sensations to more numbness. That's not a good thing - it shows that the nerve damage is worse, but it sure feels better!

Good luck with your journey. Know that you're not alone!