Living with Neuropathy - Welcome to the group

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.

@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

@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

My main concern is how many days I have left in this life And whether wifi and the energy of electricity as emitted by our smart phones and other devices are wholly or partially responsible for this horrible and most unfortunate disease

Pain

Try Kratom

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