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!

Oh! And I have also taken Tramadol as well-same results.

158 views and no reply?

600 mg of lyrica or = neurontin plus 100mg of elavil plus tramadol would do the trick. however there has to be a pain vs out of your mind level where the pain is preferable. Your like most of us and dont like the horrible side effects all these drugs bring along. Im out of it on 20 mg antryptoline and yet some folk take 150 mg for depression

I live in a 3rd world country where opium is freely available and police dont care. The thought has crossed my mind...

--http://neurotalk.psychcentral.com/thread143231.html

By the way, Metanx is just a combination of B vitamins and folate that one can generally get over the counter (depending on your insurance coverge, it may be better to go that route).

Also, diabetics tend to deplete a lot of vital minerals--have you had magnesium/potassiium levels checked? This may be contributing to your symptoms.

Also, one thing everyone with diabetic neuropathy should at least give a try is alpha-lipoic or R-lipoic acid, a potent anti-oxidant that is also a blood glucose normalizer. In Europe, these are prescription (in the US they are an over the counter supplement) and are routinely given to diabetic neuropathy sufferers.

I just wanted to let new members know, and remind older members, that the number of views does not reflect the number of members who've perused the thread.

Here's an excerpt written by Chemar explaining this very thing:

Thanks Koala, thought it was very odd for this forum but didnt know why.

I want to thank everyone for their input. These will all be things I will disscuss with my doctor today at the appointment!

Hello ethomas,
Like you I have tried all the pain and other meds and found Methadone to work the best, use to take 10mg 3 times a day now I take 10mg in the am and started taking 10mg amitripyline at night and its the best solution so far. I have had PN for over six years and most of the day I use a wheelchair when not using a walker. At your age a cure will probably be found in your life time, at my age I also have other health issues. I suggest you take the supplements posted on this forum, work on getting a good nights rest, crazy as it sounds the body will condition its self to pain by numbness although it does weaken the body. Good Luck

Hi ethomas,

Opioid analgesics are not the firstline, preferred, or even most effective meds for neuropathic pain, which is one reason your doctor may be hesitant to prescribe them. As zorro13 mentions, sometimes a combination of meds is more effective than any of them singly. This is one reason why a neurologist specializing in PN is better than a general neuro.

Talking about pain to any doctor is a matter of candor. In brief, talk about the pain - being as descriptive as you can - and its effects on your day-to-day life. Google: talk to doctor about pain

For weight loss, I recommend the diet found at the back of The Intractable Pain Patient’s Handbook for Survival
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
with your doctor's approval. I do not know if it is appropriate for diabetics. Once you begin losing, you should be able to increase your activity/exercise to help lose more.

Doc

Welcome to NeuroTalk!

There is evidence in studies that certain nutrients help diabetic neuropathy.

They are:
lipoic acid
acetyl carnitine
Vit D
Benfotiamine (a special form of Thiamine B1)

Most doctors don't follow this research so don't expect many comments from your doctor.

Here is a thread with links to read about them:
http://neurotalk.psychcentral.com/thread121683.html

If you decide to take lipoic acid understand it may lower blood sugar levels, and affect your daily insulin requirement. In the case of it alone, you need monitoring with your meter, and the doctor.

Here is one example about lipoic acid:
http://www.ncbi.nlm.nih.gov/pubmed/19019027

There is a link at the top of the page on the right for PubMed.
This is a collection of medical research on many topics.

You can search it yourself for "supplements diabetic neuropathy"
or just diabetic neuropathy itself and find zillions of papers on this subject.

You may need to look to your diet, and see if you are eating enough essential fatty acids, magnesium, zinc, etc. Diabetics lose magnesium thru the urine, for some reason, so you may need to watch that mineral closely.

Also you may need testing for B12, Vit D, and gluten intolerance.
Some people with gluten intolerance have chronic neuropathies.

Don't accept "normal" when you get B12 and Vit D measured...as US lab ranges are very low, and when you are low neuro damage is possible.

You are going to have to do homework here and read, and learn. Much of PN recovery is up to YOU, because doctors cannot or will not do it for you.