Originally Posted by MommyN

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!!!

Originally Posted by ger715

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)

Originally Posted by Stacy2012

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!

Originally Posted by MommyN

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!

Originally Posted by ger715

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)

Originally Posted by MommyN

While I understand that Dr's are trying to be careful of drug seekers, I feel like those of us with legitimate pain diseases are being mismanaged, mistreated, and disrespected by doctors much of the time.

Originally Posted by MommyN

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?