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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
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???
Replies to "Thanks fir welcoming me. I have had cidp for 16 years, my neuropathy is unexplained...have been..."
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
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 am sorry you are in so much pain, i wish i had some magic answers but i don't. I do put foot creme on at night and it does cool my feet off and takes away the burning needle feeling. Otherwise I just try to stay active, best wishes to you, I hope you find relief soon.