Hello to all of you. This site and all of you have literally saved my life. A week ago I felt completely alone, but now I know I am not. This is my first post, but I have been lurking around here for a few weeks. I was diagnosed with diabetic PN in 2008 but felt symptoms in 2005. I was diagnosed with diabetes in 2007 while pregnant and it never went away. My numbers were never terrible, a1c around 6.9. I was devastated by the diagnosis, but was still ok, just always tired, so it was all easily pushed out of my mind. In 2008, after being misdirected to the podiatrist, at a toe hair laser removal session, I did not feel the laser on my toe. I guess most people can barely tolerate it. My laser doc said to get to a neurologist asap. I did, got sent to do a nerve conduction study, and boom. Saw it on the doctors face. His report referred to me as a "very pleasant but unfortunate woman." What did that mean? It meant that I was diagnosed with diabetic PN and I was told it was chronic and had no cure. That's it. I went on oxycodone because I was not functioning bc of pain. Never used drugs in my life except a few weeks post surgery for pain, but was dismissed as a drug seeker by the first two pain clinics I saw. Felt attacked and disheartened. Newly divorced from a physically, emotionally abusive alcoholic, I was raising two little kids on my own. Pain overwhelming. Moved to be near family for awhile but hate Utah. Went off pain meds bc of treatment by condescending drs. In 2011 had to go back on Oxycodone and added Lyrica 600mg, Cymbalta 60 mg. and Metanx. Quit Metanx after 4 months bc it was not covered by Medicaid (a crime!) Two months after quitting Metanx, my nervous system had a complete meltdown. Feet burning like I'm standing in a bucket of acid, nails being driven into my toes, spiders crawling up and down my legs, numbness overtaking my legs up to mid-thigh, a veil of numbness over entire body.New organ symptoms: my lungs feel like they only have half their strength a few hours a day, heart beating fast sometimes, incontinence sometimes at night, jittery and feel unable to do anything but be in bed in the evening. Nauseous if I dare eat. Lost 20 lbs in a month without trying, just too sick to eat. Electrical zapping runs the entire length of my body in random attacks. I started Metanx again and in a week my body has calmed tremendously, zapping gone, incontinence gone! That is a wonder drug! Please try it everyone, for $80 it is a godsend, but a crime that Medicaid doesn't cover it. I am all my kids have and they are young. I must be alive and healthy. My body is betraying me, and the dr's are no help. My current Neuro said, "There is no cure. There is nothing you can do." After being dropped by two pain dr's who wanted a "good" patient who doesn't Google, ask questions, give input or cause them to work very hard, I am at a pain clinic that said, "You are incurable. There is nothing you can do." They want to put me on Morphine when the only pain med that has worked for me is Oxycodone or Oxycontin. He refuses to write for those bc of their "street value." I am sick to death of being treated like a drug addict at the pain clinics. Drug screens, being told what works for my body, being spoken to in a condecending tone. Please, if anyone has any input or ideas for me, I would so appreciate it. I trust the people here more than my own "doctors." Using that word lightly, as they failed to even tell me about B-12 or Metanx. My current a1c is 6.5, sugars at 95 fasting and 100 40 min after a meal. I take 1000 ER Metformin, 60 mg Cymbalta, 600 mg Lyrica, Gabapentin (what is this doing for me?) occasional Ambien 10 mg, occasional Xanax .5 mg. I just quit Lipitor after reading what it does/doesn't do. Could my body be toxic? I have felt like my body is slowly dying since diagnosed with diabetes and going on Metformin and Lipitor. I have started a bunch of vitamins a week ago - B complex, Ginko Biloba, Potassium 595 mg, E-400, DHEA 25 mg, Fish oil, some antioxidants. Already, I feel like my body is coming back to life. I cannot believe the difference. How long do vitamins take to work??What does everyone take for exhaustion? I bought a lot more vitamins last night in hopes of curing myself of this horrendous disease. My family thinks I brought this on myself - that it is all my fault that I have this disorder. That hurts. This site and my kids and dog are all I have in the way of support, so thank you to all of you. Any ideas for me? Because I will not accept that there is nothing I can do to help myself. Everyone's research here is amazing, and I would like to hit my doctors over the head with it. Idiots with a degree. Motivated only by $$$. Sorry for ranting, but I want to take this shameful situation public, the underfunding of PN, the pain and suffering that pain clinics cause, the urgent need for funding, research, and mostly EDUCATING THE DOCTORS. I see the top Neuro in the state and he said to just go to a pain clinic. That's all you got??? Please help me with any opinions on my case. Any magic vitamins or any other treatment?? Many thanks for any input! Mrs. D, help me!!!

Hi there and welcome to NeuroTalk. I hope you find the help you need to bring you relief from the PN

Just wanted to let you know that mrsD is on vacation at present, so you may not hear from her for a while, tho I am sure she will respond as soon as she can

Hi, I can't help you, as I am still trying to help myself, but I feel your pain and I said a prayer for you after I read your post.

When you said:
"After being dropped by two pain dr's who wanted a "good" patient who doesn't Google, ask questions, give input or cause them to work very hard"

I could very much relate to you. A couple years ago my Blood Pressure soared and my dr asked me to leave his practice for the same reasons you stated, I was trying to be my own dr. I felt hurt and abandoned. I thought, how awful was I that a dr actually asked me to leave??? Just because I refused to go on the specific med he wanted me on????

I didn't realize how deeply that dr hurt me and made me feel wrong...until now 2 yrs later I am dealing with some kind of neuropothy in my feet that 2 drs say is from my thyroid even though they tested my fasting diabetic glucose they say i dont have it but I think I do.

Anyway, I say all of that to encourage you to keep on being in control of your health. I fired the first dr I went to and took control of my own health. I found a dr that was willing to give me the desicated thyroid hormone I wanted. And I have learned that no dr will ever care about me as much as ME. So if I have to fire another dr and move on then I will.

So don't let any dr make you feel less for taking charge of your own health. Keep fighting the good fight to find a dr JUST TO FIT YOUR NEEDS. I am learning to trust myself more and to fight for myself.

I wish I had other words to help you but its a journey I am on also. But I do believe my God is able to heal me..with or without dr's, and if I am not healed instantly then He will guide me down the path to finding healing with a dr's help.

Don't give up!

It is sad when there is so much doctors do not understand about these conditions and not too many out there that seem to want to. I agree, when even mentioning the internet or in fact, Neuro Talk, my Pain Specialist rolled his eyes. ( Mrs. D did help me with some supplements. I take Benfotiamine 150 mg's qty of two, twice a day. Also Stabilized R-Lipoic Acid (R-Lipoic important not Alpha) 100 mg's once a day, two make me a bit anxious, and Vitamin B-12 MethyCobalamin (MethylCobalamin important) take one to two 1 MG a day).

I see my Pain Specialist every 4 months and his assistant every 2 months. I am fortunate, my Pain Doctor does understand pain. He has done several different procedures; none helped. But, he has prescribed pain meds; not to completely take away all pain; but at least get thru the day. He does prescribe the OxyContin, as well as Oxycodone for break thru pain. He was recommended by an orthopaedic doctor. I had spine issues, leg and feet pain, burning, swelling, etc. Every month I have a pickup date for prescriptions; never know when a urine test will be at random required. I am fine with that. Too many addicts have caused doctors great concern and many are afraid to prescribe. I have found the only ones that will at least try to help pain are definite Pain Specialist. The other doctors do not want to get involved in prescribing any narcotics and say or do anything to avoid the issue. About four months ago, my Pain Specialist was amazed at my imporvement and copied down the supplements, vitamins I was taking. He said he had to admit this was the best he had seen me. Of course, I still need all the pain meds; but much of the burning has lessened and much more energy as well.

Not sure this will be of help for you; but just my input. It is too bad more research is not given to help people with chronic pain and train doctors to understand these issues.


(Gerry)

Thank you - I am trying to be strong, but some days it is so hard. After reading your post, I would say one thing. Treat yourself as if you have diabetes. The order is that first you get neuropathy, then you get diagnosed with diabetes and you have the problem of neuropathy already.

When I was pregnant I was borderline diabetic and the doc said I didn't have to worry until I was "officially" diabetic. No dietary changes or anything. WRONG!! At that moment I should have been sent to a diabetes educator and put on insulin (in pregnancy you can't use Metformin). I should have made over my diet and made radical changes, because at that moment my sugary blood was damaging my nerve sheaths.

Just my opinion, but as a precaution EVERYONE should eat as if diabetic, because it is the only way to help ensure the preservation of your nerves. I have my little ones on the same diabetic diet as myself because they are predisposed to diabetes/neuropathy, so may as well start protecting them now.

Just learned about Vit D and Calcium and fat and having to take them all together. Look up metabolic syndrome - had it all my life.

I would have given anything to get this advice 20 yrs ago. I would be healthy today. So I started last week. No sugar, no processed food, only whole foods. Only grilled or baked fish, chicken, no red meat. Cod liver oil. Whole milk (yuck!) Bacon, eggs with yolks, butter, potatoes w/butter, nuts, cheese, greens. The idea is eat Vit D, Calcium and fat all together. This will prevent metabolic syndrome. Funny that I NEVER ate these foods until last week, but the foods and mega vitamins all seem to be helping, but I know it will be a process.

Anyone have my problem and trying to solve it using food and vitamins?

Thanks for the info. I wrote it down and will try those vitamins. I am now going to become a vitamin addict, I think!

The program you are on is exactly what works for my pain. I have tried other pain meds and they just don't work, or they work but make me really tired. I am looking for a new pain doc who will prescribe Oxycontin and Oxycodone for breakthrough pain. The big challenge is finding a pain doc who will listen to your needs and what works on your pain. My currrent doc wants to put me on Methadone, but that scares me to death! I don't know about that drug. Anyone had good/bad results from that drug?

They are crazy here! The pain doc drug tests every 2 weeks and will only prescribe 2 weeks at a time. Does anyone have a good pain doc and neuro in Salt Lake City, Utah? Thanks!

Mommy, I agree with you, and I am trying to get rid of white flour and sugar.

I am thinking about buying one of those glucose things to test my sugars, but I stand there and look at all of them and get confused and walk away. I guess I need to do some more research and figure it out and buy one and like you said, treat myself as if I have diabetes, because something in my gut says I do.

thanks!

Yep, get a Contour meter or whatever one has the cheap strips unless your doc will prescribe u a meter. Pharmacies and docs also give them away because they get loads of them for free. It's easy to use. I wish someone had told me this before I was officially diabetic and my nerves were already damaged. A book, Blood Sugar Solution by Mark Hyman is the best $30 I ever spent.

Thank you! I have decided to buy one as of right now. Been thinking about it for weeks. I have questioned the dr saying I do not have diabetes from the moment both said I don't have it, just cuz 90 was "normal".

thanks so much your words encouraged me! This place is great. Talking to people or just reading, much wisdom in sharing.

Next someone will come along with advice for you or you will scour this site and find it yourself! Praying for you!

Not sure I would be to thrilled about Methadone. Unfortunately, the Pain Specialist did try a few other things before settling on the OxyContin/Oxycodone. I also had a few procedure; injections, etc. that did not help; so the doseage would be increased. It's too difficult to go right in to A Pain Specialist, or any other doctor for that matter, and ask for these meds. Unfortunately, the addicts have made all of us look suspucious if we ask for anything in particular.

I get a lot of my supplements/vitamins from Iherb.com I have no affiliation with them; but on $20 some free shipment and on $40 , a 2 or 3 day free shipment. I have found them reliable and like the free shipment. There is also Vitacost.com and Amazon carries many of these as well. Most of the items; especially the Benfotiamine, MethyCobalamin B-12 and the STabilized R-Lipoic Acid are not found in your regular pharmacies.

I don't think I mentioned this previously. Stabilized R-Lipoic Acid, and MethyCobalamin B-12 all need to be taken on empty stomach or at least 1 -2 hrs. before eating and 1 hr. after. Usually the MethylCobalamin is disolved under the tongue.
Gerry)