Curious to see what pain medication everyone is on. I am having great difficulty managing the pain. My neuropathy is due to diabetes since 1996.
My EMG results were very abnormal and I was told the damage is not reversable due to the length of time I have had uncontrolled diabetes.

I am currently taking about 3400mg of Gabapentin and over 400mg of Tramadol a day followed with 20mg of amitripiline at bedtime.
I have asked my neurologist to try a pain medication and his answer to me was Motrin or Tylenol. I told him Motrin is not an option for me since I am in
3rd stage kidney disease. I am considering calling a Pain Management Facility any advice or is anyone else having or have had a problem getting the appropriate pain medication for neuropathy?

Thanks

My neuropathy is from a bout of necrotizing vasculitis and I've had neuropathy pain for five years. I'm currently taking 2400mg of gabapentin. In the past I've taken Keppra, Oxcarbazepine, and Topomax (one at a time) with the gabepentin. They have all worked to some extent to ease the pain and discomfort, but gabapentin alone works pretty well. I've taken all this other stuff because my neurologist has been trying to find a "cocktail" of medications that will make me feel better as my pain has gotten worse over the last year or so. Good luck finding the right thing!

Colbey,
Unfortunately it sounds like you have a lot going on in your body. Diabetes is just an awful condition that has just so many nasty complications. I think your response to your neurologist when he recommended advil was great. Good job at being an advocate for yourself! Due to your complications from the DM, I think it would be a fantastic idea to visit a pain management clinic. The specialist there should not only be up on the available pain meds and their uses but also what you, in particular can take with the stage three kidney disease!
Side note - The community I live in has only one of these clinics which is attached to the hospital I work in. This pain clinic is fantastic, along with the hospital so I might have a slightly skewed notion.
But in all honesty, since you haven't had any luck with your doctors idea of pain control and considering the amount of medications for pain you take compared to the amount of uncontrolled pain, a good next step for you could be a good pain clinic.
Good luck! I really hope you find a solution quickly.

Thank you Jaynurse and Augie. I have called and made an appointment with a pain management clinic here in kentucky. I am desperate for a break from the pain I am up until 3 to 4am most nights it is so depressing and causes you to have thoughts you normally would not have.

The hospital where I see my doctors have an online patient access program where you can send emails to your doctor, view your lab results etc...

Here is my email to him at 2:59am
03/06/2009 02:59
help..it is 2:45am and like all the other nights i can't sleep showers foot rubs nothing so I take another pill and another..this is what I am up to..
6am 1200 mg neurontin 100mg tramadol
11am 600 mg neurontin 100mg tramadol
4pm 1200 mg neurontin 100 mg tramadol
9ishpm 1500 mg neurontin 150 tramadol
Now on days where I am exhausted frm not sleeping I dont understand before I selpt now I dont..I will sleep maybe 6 hours but when i wake up it is horrible i have no sensation up to my knees my right leg is worst but yet I feel pain in my feet like needles sharp knife like. When trying to walk my right leg often buckles, I have fallen down in public, it is hard to lift my right leg or left leg to get into a vehicle..I cant remember things misplace things. I wish i Had one normal day pain free
I used to be able to do so much more this is horrible...
Is there anything else i can try i taking tramadol and it still doesnt seem to help wit nights are horrible so i take extra of the neurontin (1500mg) and (150mg)of the tramadol before i try adn go to bed.during the day the pain is not as basd my husband massages my feet with extra icy hot. i have purchased a traedmill for exercise
His response...
03/09/2009 14:12 Mrs. Moore:
You do not have many options at this point. You are presently taking the maximum dose of Neurontin and tramadol. You could increase the amitriptyline to 150 mg per night (3 tabs po qhs), but this is also a very large dose. You could add Advil or Motrin to your pain regimen. You could take 2-3 tabs po 4 times per day as needed for pain.

Is it me? But my thoughts are can we try something else...no other options...??? How frustrating to hear...

I am sorry I am just tired of being like this....sorry had to vent

I was on the same meds as you for several years with NO relief. Your story sounds so hauntingly familiar. I got off the Neurontin (advise from my shrink)& it was replaced with Percocet for pain, Cortisone injections, several each month, changed all meds. Went on lexepro for depression, Changed my diet to All Organic, Did Yoga & PT 3x weekly....

For me, this worked. I had a terrible time with the Neurontin. I have been on these meds now for 9 years & have cut down my dosage of pain meds myself by one half. I know everyone says they so addicting but for me it was opposite. Don't misunderstand, I still have pain, every day, every minute..but I can tolerate it much better. Everyday is not terrible. I get that 6 hrs. of pain relief several times a week that is said needed to re-set your internal pain threshold.
I hope this helped..

Thanks Garden
Yes and proves that just because you have a pain medication available that you will not be addicted to it. I am currently taking the maximum allowed for neurontin and believe when I say I can tell. My memory is horrible to say the least. I can barely remember what I did the previous day.
I saw on some websites other medications like Lyrica and Cmbalta I think it is called but when I suggest them he says he is concerned on the affect of weight gain and that most of his patients have great success with neurontin.
I picked this doctor because he was the best at the hospital but now I am second guessing my decision.

You are so right just a little break from the pain helps. Sleeping to me doesnt count I just want to be able to be active with my kids and husband without being grouchy because of the pain. It really stinks and I now it is affecting my children as well as my marriage.

Can I ask you if you had other form of pain medication or did you go directly to Percocet. I am on Ultram or Tramadol and it does nothing but keep me awake thru the pain (go figure) I have scratch marks from the side affects I guess. I gave up using the medication on Sunday...
I have an appointment with a Pain Management center on April 15th and hope they can find the right combination for me.

3600mg Neurontin and 30mg Methadone works well, though I need to have the Methadone increased because of my high drug tolerance and my extremely high level of pain. Advil and Tylenol for me would be like taking nothing at all. Don't these drugs work havic on a person's liver in high doses? I don't know anything about kidney disease, but you certainly need totake it into account.

Best of luck with your treatment and keep up your research and questions. I find that its the best way, keep involved in your treatment and dx.

Jay

I was put on something called Soma? Carasopradal I think...Those we called Brain killers instead of Pain KillersThey got me messed up & did nothing to control the pain. I was offered phentenal patch, not sure that is spelled correctly, but my research scared me. I don't want to be dysfunctional. For me, the Percs work the best. Unfortunately I have learned to plan my life around them. They are not the magic pill but I Can manage to get normal things done most days.

I do hope your Pain Clinic will work with you to get you the best relief possible. I have been so Blessed to have found mine! Good luck on the 15th! Let me know how you made out?

I can also relate to what you said about the husband & kids, Yes it does affect them, but if you are open with them & share some of the pain you are in, they will know what is helping you...Don't be afraid of scaring them away. I made that mistake at first. THEY turned out to be my biggest strength in so many unexpected ways!

Due to multiple major issues with my spine I have neuropathy in my legs, feet, arms and hands. I also have a multitude of drug and food allergies, which prevented me from being able to successfully take all the medications already posted by you and others in response to your issues. With every step I took came pain that nothing but steroidal epidurals relieved and that relief has been very short lived. Recently my pain mangement doctor asked me if I would try Nucynta and Nucynta ER. Currently I am taking 60 mg every 8 hours of brand name oxycontin and 150 mg of Nucynta every 8 hours and I swear this is THE FIRST medication I have used that has FULLY provided pain relief from the neuropathy! I am actaully walking and walking without a tear on my face! After I complete my next seriies of epidurals in 5 weeks, I will happilly swtich over from the oxy to Nucynta ER. Once you see a pain management specialist, I hope you bring up the option of taking Nucynta. This medication has already begun to change my life in ways I cannot explain to anyone but those of us who live with the never ending lpain from neuropathy. Seriously, I can walk with my grandkids and play with them...no rough housing, of course, but the difference in my life is black and white! I've been seeing pain managment doctors since 1988 and this is the best I've felt since I was in three accidents that totalled all the vehicles in less than a 6 month time in 1988.

Don't be sorry-you do need to vent. I understand the frustration & the " thoughts you wouldn't normally have". I fantasize about chopping my legs off I'm in so much pain. I can't take any of the drugs you're on b/c my neuropathy is due to a problem w/neurotransmitter and receptors in my brain. I currently take 40mg of oxycodone a day, but still have pain. I've found research that says up to 60mg/day may be needed, but my doc won't increase it. I recently started lidocaine ointment, 5%, 1/2 tsp to each foot/leg 3X's a day. The literature says you can use it 4X's/day, but once again, my doc won't increase it. It does help some, more w/the burning pain than the sharp, electric, jabbing pain, but it's an improvement. It's topical & the absorption rate is minimal, so there are basically no side effects. My feet are numb anyway & it doesn't make them any more numb, which was a concern of my doc. It's not magical, but does help enough so I can sleep for an hour or two. Hope this helps.
Annie