Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
I have peripheral neuropathy in my left foot that has now spread up to my shin. It all started with either bad sprain or worse surgery in my left foot way back in 1998. Been through most therapies. I had surgery that really helped for several months. I was put on Lyrica / Cymbalta as well as lidocaine/prilocaine cream after that – which was a year and a 1/2 ago. But now that has stopped working. Going back to more nerve blocks – I had "permanent" nerve block that brought relief for years but that was back when the pain was in about a quarter shaped area. Its much larger now. I am getting an MRI next Friday and I see the doctor about the nerve block later this month. I am new to here as well. I have been living with this for decades and fear I am running out of affordable options. I am hoping to find some ….hope????
Hi, I'm Angie and I just found this discussion group. I have peripheral neuropathy from chemotherapy. During my treatments, the neuropathy was just tingling and extrabated by cold. Now it is intense pain and numbness in my hands and feet. My last treatment was in November and I've read that for many, the neuropathy slowly goes away…i am praying this will be the case for.me as well. I was put on lyrica but had severe side effects and am now weaning off…having some issues with withdrawal from that too. I've tried physical therapy, lidocaine patches, CBD oil and ibuprofen but nothing seems to relieve the pain.
Does anyone have any other suggestions? Any help is appreciated.
This condition seems to be different for each of us and different medications seem to work for some of us and not for others — still, we are sharing information and encouragement and trying to help each other.
When I miss a dose of lyrica or gabapentin, I start to feel unmedicated neuropathy, not withdrawals from lyrica or gaba. It is extremely painful.
My neuropathy, like yours, started out with needle-stick feelings and tingling, then last July it suddenly escalated – it's been getting worse since then and the amount of Lyrica and gabapentin I have to take to keep the pain at bay has been increased to almost the limit of what 'the law' allows.
I don't know what 'the law' expects us to do after we've reached their imposed maximums – kill ourselves? I don't know why we're letting politicians 'practice medicine without a license' at all.
My neurologist says that I need to find a Pain Specialist. So far, I have had no luck finding one that takes medicare plus humana on the east coast of Delaware.
Thank you all for your input. Peggy
Liked by John, Volunteer Mentor
@angiepainter
I, too, have CIPN which I developed in the fall of 2017. I have spoken to oncologists and neurologists and read as much as I can, and no one seems to know… it may go away or it may not. I was unable to tolerate the various medications suggested (like gabapentin, lyrica, etc.) so I went to a doctor of Chinese medicine and acupunturist who suggested an herbal pill called Zhi Bai Di Huang Wan which traditionally is given to women going through menopause to cool off their power surges. At last, I could sleep at night!
People in my cancer support group also suggested CBD oil which comes in various ratios to THC and in various forms (soft gels, balms, etc.). The balm was a good short-term help. Topricin's Fibro Cream lasted longer for me (you can obtain it easily on Amazon) which is mostly arnica.
Then I came across a neurology blog in Europe where various doctors were noting their luck with an endogenous fatty acid amide called Palmitoylethanolamide (PEA) for all forms of neuropathic pain, and it has been a life-changer. I take it twice a day (800 mg total; but up to 2,000 mg is often used for CIPN) and it keeps the burning under control (except after aerobic exercise or a glass of wine, both of which seem to set if off). When I first started taking it, I also kept taking the herbs; then could omit the herbs after about 3-4 weeks. Also, last September, I only could find it (unadulterated) in the Netherlands. Now, apparently, there are various U.S. distributors. Even my PCP is taking it for his neuropathy these days after hearing about my success with it. All natural, there are absolutely NO side effects which is a HUGE blessing.
Wishing you luck!
Liked by John, Volunteer Mentor, steeldove
Hi Angie @angiepainter — welcome to Connect. I also have peripheral neuropathy but I only have the numbness. There is another discussion you may want to join in and meet other members who are discussing chemo induced neuropathy.
> Groups > Cancer > Does anyone have a treatment for Neuropathy due to chemo
— https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/
I take over the counter supplements that have helped me some and have helped others with the pain from neuropathy. You can read my story here in an earlier post on Connect for what helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
You mentioned that you have tried physical therapy. Have you heard of myofascial massage therapy? There is a great discussion here about how it helps with the pain associated with neuropathy and other conditions:
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
— https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Liked by Lisa Lucier
After I had 2 strokes in 14 then along came neuropathy. Neuropathy seems to attach itself to anything that will allow it. The last time I increased Gabapentin, for the pain, I had dizziness so I went back to what I was taking, I feel the pain was better. The pain I have is all over, the right foot, then the left calf, then nothing for a while. I wake up in the morning burning all the way to my waist, the skin is not hot but I'm still burning. Neuropathy is "so much fun".
mlmcg
My pain management doctor is recommending two pain reducing procedures. One is RF ablation, which is burning the nerves coming out of the spinal column, and the other is neurostimulation. She says neurostimulation is particulary good for peripheral neuropathy. Has anyone else tried these techniques and do they work? What are the risks?
@cwallen9
In response to your question regarding having tried neurostimulation, I read on the Mayo website how one of its employees had tried the Calmare Treatment Therapy (aka Scrambler Therapy) with great success for CIPN… so I gave it a try. I personally found it to be physically overwhelming and gave up after two treatments. I think it must depend a lot on who is doing the procedure — how well-trained the person is with the equipment. It is not covered by Medicare, by the way, so treatments are out-of-pocket. (I couldn't get out of there soon enough….)
@cwallen9 here is the Mayo Clinic story @elizm mentioned about the scrambler.
Breaking Away From Pain With the Help of ‘The Scrambler’
— https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/
Hello Tasha @ttesch2000, I see you just joined and I would like to welcome you to Mayo Clinic Connect. You are asking if you need to bring along someone with you. Do you have an appointment for treatment at one of the Mayo Clinic locations? You should be able to get your question answered by talking with the appointment coordinator. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Liked by Lisa Lucier
Your procedure sounds like periodic treatments. In this procedure, they implant a wire along your spine that constantly stimulates the spinal chord to mask the pain signals. There is a controller that they implant in you that you can control the intensity via a smart phone. They try it for four days with the controller outside your body to see if it works before they implant it. A Johns Hopkins paper gave it good reviews. I am not sure of the risks when they put the wire near your spine.
@julchilds
I’d never heard of it before, I think it is a newer technique. It involves rubbing a flat disc along the muscles, it was painful for me, but so worth it in the end. My PN was in my feet and ankles, they were numb, my feet were excruciating. It was progressing up my legs.