Neuropathy

Anyone here suffer, and I mean SUFFER from neuropathy? My feet hurt so bad. I am maxed out on Gabapentin and my feet still hurt. I can mostly ignore it during the day when I am up. But at night when I want to sleep is miserable. There are nights I do not sleep at all. I am up walking around to relive the pain

Does anyone have any tried and true "fix" that you use for the pain? I am going to go insane if I can't get this taken care of.. Thank you

Skip

Promoted Content

Get email updates from MSAA

MS news, local educational events, vital programs & services

Subscribe now

Promoted by My MSAA Community

20 Replies

oldestnewest
  • Hi Kath, I take oxycodone for pain along with Lyrica and cocodomols. Maybe you need to ween off the gabapentin and try something else. I am not a doctor or any thing just hoping you can find relief. Have you tried soaking your feet in warm /hot water, or using heat pads ? Do you have diabetes because that can cause you to have a lot of pain in your feet, if I was you go talk to your doctor and ask for help, praying that you get peace, blessings Jimeka

  • Kath, I have terrible neuropathic pain in my legs, and like you it is so bad at night I have trouble sleeping. Like Jimeka I take oxycodone as well as gab ape tin. It's like you wrote my story. I'm sorry I don't have an answer. One thing that does help me is to meditate, not deep ommm stuff, just a kind of surface meditation. I focus on each of my children (I have 11) and each of my grandchildren(14) and so that takes a long while, and kind of takes my mind off my pain as I count my blessings. I don't know if that helps. I will be keeping you in my prayers, especially your feet! Kelly

  • Actually my MD told me to meditate and listen to some quiet music while falling asleep. I am going to give it a try. But maybe the oxycodone is the answer. SLEEP I need SLEEP

  • I'm using aloe gel topically (recommended here by someone). It helps a little. And for me, keeping my feet warm wit ski socks and stick on heating pads on my feet help a lot. Just can't fit all of that in shoes :(

    Above meds gabapentin, pregabalin, amitriptyline, cymbalta, Lidoderm, capscacin, can be tried alone or in combo. I've tried compounded tinctures but insurance doesn't cover and didn't help. Told LND a long acting naloxone or CBD oil (also compounded, could be helpful)

  • I have severe neuropathy pain in my legs . it can be crippling . I had good luck with a Chinese herb called Corydallis. it really did help. unfortunately I have an allergy to it, and had to stop taking it.

    I tried gabapentin, 3200mg a day didn't help, Lyrica didn't help, vicadin didn't help. I now take Nucynta. it is a narcotic for nerve pain, and it is helping.

    I hope you find relief! your in my prayers.

    Renée

  • Is this Nucynta a new drug ? Never heard of it. Maybe I can get my Doc. to order it. Is it a narcotic?

  • Yes, it is considered a narcotic . there is an extended release and a fast acting. I'm not sure if it is new, but my pain management doctor said it was for nerve pain.

  • With the extended release I can still function without falling asleep or being to dizzy.

  • Hi Kath55 so sorry your going thru this. :( l went thru a phase when it felt like my skin was crawling, actually it probably it still does. They had me on gabapentin and that never worked, so then they put me on Lyrica. That didn't work either. But might for you. I'm on Tramadol now, and that works great so far. And so far no allergic reaction. Thank goodness.

    Good luck. :)

  • I also take Tramadol and it keeps my pain at a manageable level. I got off the OxyContin type drugs years ago, they are to addictive.

    My state, Tennessee, made a new law that anyone who gets prescribed any of the narcotic pain meds, on a long term basis, has to take a urine test every 6 months to check that you are not taking more than prescribed and sign a form every year giving your doctor the right to check with other doctors to make sure you are not "Doctor Shopping" or going to other doctors and getting pain meds from them also. I can refuse but then he can no longer prescribe narcotics for me, per state law. When this first started, a couple of years ago, I was required to pay for the urine test. After the second test I told my doctor that I did not think that I should have to pay for it (Medicare nor my private insurance would pay) seeing as how it was required and I had done nothing wrong (had not misused my drugs). He told me that the nurses had a partition that I could sign and then I could refuse to pay. We were all protesting, to the state. I have not had to pay since then. I do not mind the test, because misuse of prescription drugs is terrible in our state, I just do not feel that I should have to pay.

    Sorry, I will now return you to your normal chat room.

  • Hi Morllyn it's horrible how some ppl that abuse the prescriptions have made it so much harder for the rest of us. I guess Tennessee is a state l could never move to haha. I can't pee in a cup or "hat" it's a mental thing with me. Had 3 girls managed to give 2 urine tests, that's it lol. After that it was blood work. At least my Dr's understand. But l only get a 15 day supply of tramadol at a time, so that can be a nuisance. But it works, so not complaining :) They tried sending me to "pain mangement" but there main thing was pee in a cup, hahaha never went back.

    I'm so glad that you don't have to pay anymore. I would have fought it also. Doesn't seem right that if it's mandatory, that insurance should pay for it :) Good deal sticking up for yourself!

  • I have it real bad on legs. I use a tens unit helps some. On high dose of gabapentin lyrica didnt help was on baclofen buthad to go off due to baf dry mouth

  • Hi Kath, I might be an outlier on this, but the only thing that has reliably helped me is Ambien. Obviously, this is only something that you would want to take at night, but like most of us, that's when you said it's worst. It takes my pain down to zero, even if I'm awake. I know it's not supposed to be a med for pain, but it's worked for me for about 8 years without building up a tolerance at all.

    Wouldn't hurt to try.

  • Interesting drug to use. I was on ambien before and it made me do weird things. Like trying to cook in the middle of the night. I was cooking frogs. This is from my husband. I had no recollection of this happening. LOL.

  • I never had any luck with Lyrica for Neurontin. the only thing that ever helped me was Tegretol. Unfortunately I was allergic and I broke out in a rash... go figure

  • Like most of this group, I take Neurontin. I have burning sensations and cramping in my feet, esp. on the right. Sometimes I also have severe itching on my lower abdomen. I take Clonazepam for sleep.For me, fudge made with cannabutter (medical marijuana) seems to take the edge off and helps me sleep when my feet/belly are bothering me (usually.) Good luck finding something to make your pain tolerable and help you sleep. Linda

  • Kath, I had something interesting happen yesterday. I had a solumederol infusion yesterday and had no neuropathic pain in my legs last night! Isn't that strange? It was wonderful. Just thought it was worth mentioning. Hope so much you find relief. Kelly

  • I ordered an inexpensive TENS unit (Transcutaneous Electrical Nerve Stimulator) from Amazon. You attach electrodes to whatever body part you want to use it on and set it at a comfortable setting for you. It sends a low voltage electrical current into you and is used for pain relief. I use Gabapentin also. But when my legs are really driving me crazy I pull out my TENS and it really helps. Your doctor would probably write you a prescription for one and your insurance should cover it. My doctor wrote me a prescription but I was getting the runaround from my insurance company because they suck and I got tired of it. So I started shopping for one on my own and found some on Amazon that weren't too expensive. It isn't the "professional" model but it works and I don't have to deal with insurance. Best wishes. I hope you find some answers.

  • Hello Kath55 I have had good luck with cheap store brand Aloe Vera Gel. It usually take about three coats. Put on after your shower and let it dry. Then again after you are bare foot for awhile. Than one more time before I put my sandals on. That will last me till after 7PM when I put one more layer on before bed. Another quick fix is Athlete's foot spray even if you don't have athlete's foot it seems to have a numbing and cooling effect. I wish you well

  • To help the pain during the day, my Dr swears by Brooks running shoes. He said "once you wear them you won't be able to wear anything else." I found a pair for cheap at Marshalls and he was right, one rainy day I tried to wear my old Nikes and had to switch back because they felt so uncomfortable! If you go to a running store you can find out your size and "platform". Then you can get them online cheaper at DSW or Amazon or find a pair at Ross or Marshals like I did. (Close to $100 cheaper than the running store!)

    I also never go barefoot. When at home I wear soccer slides with socks. Walking even a few steps without my arch support flip flops kills me. I know you said your pain is at night. My Dr put me on clonazepam odt, (a muscle relaxer that melts in your mouth) and it helps me stay asleep. Recently I was waking up like you and he put me on Lorzone. (A longer acting muscle relaxer). I am sleeping through the night again now.