Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

About 3 years ago after trying just about all "pain killers" on the market, i tried both CBD and THC tinctures. The CBD did nothing for me. The THC is taken each evening and if nothing else, i sleep thru the night. I cannot afford to take the THC Tincture throughout the day so i opt for a good night's sleep instead.

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@rwinney

Hi and welcome! Interesting about the IVIG. Too much of anything can cause damage but there really does have to be a point of choosing our battles considering we do need to live now in comfort as best we can. I'm 3 years in and continue to search. It's troubling to think that at my age (46 when srarted) of the long term damage but being between a rock and a hard place I've found that my Hydrocodone, Lyrica, Duloxetine and a ton of supplements need addition help to control my pain. It was lidocaine infusions until they stopped working. My Neurologist has plasmapherisis and IVIG as additional treatments in future. As of now I'm choosing CBD and THC tincture as the add on to the my other treatment plan. Exhausting isn't it? Maybe try Kratom…It's being discussed more in this forum. I wish you luck and hope you can find more comfort in this crazy journey. Be well.
Rachel

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Your taking some heavy stuff! None worked for me except Kratom! Watch your liver!

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@wilcy

Am taking capsules! Going to switch to powder! Really helps with sleeping good! My daughter is wanting to use it for back etc! Been cking your online source! Am taking quite a lot! Only been doing this a few weeks! Am scheduled to see another back surgeon the 19 th! Most don’t believe in supplements! I take a lot!

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I had back surgery in 2014. Didn’t do any good and have heard the same from other people.

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@ronva2co

About 3 years ago after trying just about all "pain killers" on the market, i tried both CBD and THC tinctures. The CBD did nothing for me. The THC is taken each evening and if nothing else, i sleep thru the night. I cannot afford to take the THC Tincture throughout the day so i opt for a good night's sleep instead.

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Good afternoon @ronva2co, I think you are on the right track. First, are you using Medical Cannabis? That is different from Hemp CBD or recreational and even street drugs. CBD actually needs some THC to make if effective for pain management. One company has a dual pack that lets you mix your own. They also give you a chart to go by for the best relief for different presenting pain situations. Let me know if you would like more information on this topic. Be safe and free of suffering. Chris

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@lorirenee1

@maryv449 I get my Kratom at Happyhippherbals. com You try a slow/low strain, one described as to help discomfort. I forgot how they exactly describe it, but it is for when you dont feel well. Usually, too, anything called Maeng Da usually works for pain. Kratom is marvelous. The only thing that rids you of pain, without the high of marijuana. Good luck. Lori Renee

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CBD helps pain for some people. It has no THC (marijuana) in it but you can get some CBD with some THC.

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@arlenejc

I had back surgery in 2014. Didn’t do any good and have heard the same from other people.

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Over the past 10 years, i've had 4 back surgeries and one brain … 3 other minor surgeries too. I'm in pain 24/7 and nothing seems to help. About a year ago, they implanted a SCS (Spinal Cord Stimulator) and the trial was great, However when the implant was done, it was no where near as good as the trial. I also have Neurogenic Claudication in both legs … no cure and not much to offer to relieve pain.

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@arlenejc

CBD helps pain for some people. It has no THC (marijuana) in it but you can get some CBD with some THC.

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CBD did nothing for me. At night, i use 100% THC Tincture and i sleep thru the night. But cant afford to take it each day so i opt for a good nights sleep.

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@wilcy

Your taking some heavy stuff! None worked for me except Kratom! Watch your liver!

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Don't remind me. Not happy about it either and trying to get to a point of ommitting one. Just not sure which will be able to be the first one dropped. Definitely plan to keep tabs on my liver as well. Have to.

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@artscaping

Good afternoon @ronva2co, I think you are on the right track. First, are you using Medical Cannabis? That is different from Hemp CBD or recreational and even street drugs. CBD actually needs some THC to make if effective for pain management. One company has a dual pack that lets you mix your own. They also give you a chart to go by for the best relief for different presenting pain situations. Let me know if you would like more information on this topic. Be safe and free of suffering. Chris

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I use medical and i buy from a dispensary .. no street stuff. I tried mixing CBD and THC but found it to be ineffective. With the THC Tincture, at a minimum i sleep thru the night. I do not smoke it as i dont want to mess with my lungs/breathing. I have a medical card and have tried a couple creams and edibles but i either did not like the effect or they did nothing to help with my pain,

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@ronva2co

Over the past 10 years, i've had 4 back surgeries and one brain … 3 other minor surgeries too. I'm in pain 24/7 and nothing seems to help. About a year ago, they implanted a SCS (Spinal Cord Stimulator) and the trial was great, However when the implant was done, it was no where near as good as the trial. I also have Neurogenic Claudication in both legs … no cure and not much to offer to relieve pain.

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So sorry for your pain. My friend's son had the same experience with the SCS. I wonder why the trial works and the real deal does not.

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@ginthert

Thanks fir welcoming me. I have had cidp for 16 years, my neuropathy is unexplained…have been thru all the tests they found no cause. I have since developes diabetes 2 and of course the pain has increases. I took IVIG treatments for almost 9 years, the dr decided i was at a stand still and took me off for fear of liver problems. I have since gone thru all tje pain drugs and am currently on tramadol twice a day as well as 3600 mg gabapentin daily
as well as dulexotein . i was taking 8 50mg tramadol a day and now the all knowing insurance has cut me down to 2 a day. I have all the numbness, tingling, fire, freezing, ants biting, knives stabing, rubber bands snapping , you name it i have it from my toes to just iver my knees and my fingers to my wrists. It is a slow death. I am seeing a new neurologist on thrusday to see if he can do anything for me. Cbd salve helps for a couple if days then it doesnt. I gave even tried oxycodine that was prescribed to be during a knee procedure dudnt help much. I have a bad knee and a bad hip, but am scared to desth on how the surgery will affect my body. You may think i am an old person, well i am only 62 so age was not a defining contributor…..any one have any ideas???

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@ginthert

Like you, I have tried every medication available for neuropathy as well as the medications in my pain specialist's bag of tricks. Everything either was ineffective or had unacceptable side effects. Lyrica was the only medication that was relieving the pain, but I wound up in the hospital because I was incoherent, lost my memory and tachycardic. The ER staff concluded that I was having a very bad reaction to Lyrica, and I stopped taking it while I was in the hospital. They had put in an NG tube, which I've had several times ,and I hate the things. But this time I had a severe panic attack not too long after it was inserted, and they had to remove it. Bummer that I couldn't take Lyrica.

After trying a bunch of meds prescribed by my neurologist and my pain specialist, I had a Burst DR spinal cord stimulator implant (that's MRI compatible) in June of 2017. It was incredible! It relieved more than 80% of my pain.

But like most medications, after a year it was decreasing in potency and I had to have the amplitude adjusted every three months. When I went to the imaging lab for an MRI, the stimulator controller said "MRI not advised". The company who owns the stimulator equipment finally came out with an update that did make it compatible. The same company has developed the dorsal root ganglion stimulator (Abbot), and I believe it's also compatible.

Throughout this process, at some point I started taking Morphine sulfate contin, and it's helped take the edge off the pain. A couple of months ago the pain specialist prescribed imipramine – from the amitriptyline family – and it's been giving me some relief. My daytime pain level has gone down from 6-9 to 2-5. When I lie down, the pain jumps to 8, something I haven't figured out.

I've been putting lidocaine cream on the painful areas in my feet at bedtime, and it numbs the pain long enough to get to sleep. Unfortunately, Medicare no longer covers it, and it costs more than $100 for less than 2 ounces. So, I went to one of my favorite store, Amazon, and found Uber Numb, a cream that has the same ingredients as the prescription version, but instead of $140.00, I pay only $16, and without a prescription.

Capsaicin cream often does the job, but for the first month, it really burns. I learned pretty quickly not to touch my eyes even after thoroughly washing my hands. I didn't feel any benefit from it, so I stopped using it. If I were to try it again, I'd wear a rubber glove.

It sounds like we're on the same pathway in the search for something that would relieve our pain. I hope you find the answer to your pain soon.

Jim

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@ronva2co, I am happy that you get a good night's sleep. Doesn't sound like you have found a cannabis solution that is financially doable. The only other practices that are part of my day include yoga, meditation, and mindfulness. I always plan some distractive activities and stay in touch with friends.

And once a week I schedule an MFR treatment (Myofascial Release Therapy) for help with the pain of SFN (small fiber neuropathy), Your leg issues are new to me so I will mention MFR (Myofascial Release Therapy) in hopes that it might fit for you. There is a discussion on Connect and you may be able to identify areas of opportunity for management of your symptoms.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search.
Have an evening of comfort and ease. Chris

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@maryv449

So sorry for your pain. My friend's son had the same experience with the SCS. I wonder why the trial works and the real deal does not.

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During the entire 10 day trial, the SCS did wonders . I kept a daily journal and its effectiveness was around 90%. But when the trial was complete and they did the implant, the effectiveness dropped to where it is now, approx 10 to 15%, a drastic drop. So far, ive had 6 adjustments but none have helped. Im told by my physical therapist to keep going back for adjustments til they get it right but i get frustrated. Sorry it didnt work for your friends son.

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@jimhd

@ginthert

Like you, I have tried every medication available for neuropathy as well as the medications in my pain specialist's bag of tricks. Everything either was ineffective or had unacceptable side effects. Lyrica was the only medication that was relieving the pain, but I wound up in the hospital because I was incoherent, lost my memory and tachycardic. The ER staff concluded that I was having a very bad reaction to Lyrica, and I stopped taking it while I was in the hospital. They had put in an NG tube, which I've had several times ,and I hate the things. But this time I had a severe panic attack not too long after it was inserted, and they had to remove it. Bummer that I couldn't take Lyrica.

After trying a bunch of meds prescribed by my neurologist and my pain specialist, I had a Burst DR spinal cord stimulator implant (that's MRI compatible) in June of 2017. It was incredible! It relieved more than 80% of my pain.

But like most medications, after a year it was decreasing in potency and I had to have the amplitude adjusted every three months. When I went to the imaging lab for an MRI, the stimulator controller said "MRI not advised". The company who owns the stimulator equipment finally came out with an update that did make it compatible. The same company has developed the dorsal root ganglion stimulator (Abbot), and I believe it's also compatible.

Throughout this process, at some point I started taking Morphine sulfate contin, and it's helped take the edge off the pain. A couple of months ago the pain specialist prescribed imipramine – from the amitriptyline family – and it's been giving me some relief. My daytime pain level has gone down from 6-9 to 2-5. When I lie down, the pain jumps to 8, something I haven't figured out.

I've been putting lidocaine cream on the painful areas in my feet at bedtime, and it numbs the pain long enough to get to sleep. Unfortunately, Medicare no longer covers it, and it costs more than $100 for less than 2 ounces. So, I went to one of my favorite store, Amazon, and found Uber Numb, a cream that has the same ingredients as the prescription version, but instead of $140.00, I pay only $16, and without a prescription.

Capsaicin cream often does the job, but for the first month, it really burns. I learned pretty quickly not to touch my eyes even after thoroughly washing my hands. I didn't feel any benefit from it, so I stopped using it. If I were to try it again, I'd wear a rubber glove.

It sounds like we're on the same pathway in the search for something that would relieve our pain. I hope you find the answer to your pain soon.

Jim

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I tried Lyrica but had to stop because it made me weird .. confused … as tho i was high.

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@artscaping

@ronva2co, I am happy that you get a good night's sleep. Doesn't sound like you have found a cannabis solution that is financially doable. The only other practices that are part of my day include yoga, meditation, and mindfulness. I always plan some distractive activities and stay in touch with friends.

And once a week I schedule an MFR treatment (Myofascial Release Therapy) for help with the pain of SFN (small fiber neuropathy), Your leg issues are new to me so I will mention MFR (Myofascial Release Therapy) in hopes that it might fit for you. There is a discussion on Connect and you may be able to identify areas of opportunity for management of your symptoms.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search.
Have an evening of comfort and ease. Chris

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Thanks Chris. No, i havent found anything to help except for the tincture i take at night to sleep. The edibles didnt do it nor did any of the creams or CBD's. But im thankful i get to sleep.

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