Margaret, have you had an EMG by a neurologist? That will yield some clear diagnostic information about the source of your pain. Don’t just settle for prescriptions. Insist on a diagnosis.
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I ended up getting a Nalu PNS device, which has been available in the US since June. Doctors rave about its advanced technology and say it’s much better than Stimwave. My implant was done on Feb 7 and the device was activated two weeks later. Unfortunately, some major mistakes were made. The system uses a tiny implanted receiver that’s placed just under the skin and takes “orders” from a therapy disk on the outside of the body. The doctor placed my implant in a spot where it can’t communicate well with the therapy disk. Now I need a second procedure — a much simpler one — to move the implant two or three inches away from where it is now. At the same time the doctor made this mistake, the clinician from the company made errors in programming the two therapy disks, and they malfunctioned from the start. A diagnostics program proved that I was describing the malfunctions accurately — in fact, it was much worse than I said. Now the disks and the remote control are in the hands of an engineer and I’m waiting for a date for my corrective procedure. All this took place over the past week, and I am absolutely worn out from stress and frustration. But I know from the brief periods it actually worked that it does WORK. It blotted out the awful nerve pain I’ve suffered since my widespread pelvic/sacrum fractures five years ago. I think I would have been happy with Stimwave, because the trial was perfect. I expect to be happy with the Nalu device once it’s working properly. The mistakes were made by people and do not reflect on the device itself. There are things about it I don’t like, but that’s true of Stimwave too. The biggest problem with Stimwave is finding a way to attach the rather large external battery pad to the body. For me, it would have to be in the middle of my back, and there’s no way I can attach it or remove it myself. During the trial, my husband had to handle it. Although I dislike the Nalu therapy disks, the advantage is that they can be placed anywhere — as long as the doctor puts the little internal receiver in the correct place! So to manage pain in the rear and bottom of my pelvis, I can wear a disk on my side, where I can see it and put it on and take it off myself. I am beyond frustrated by the people errors but very hopeful about getting substantial relief once the mistakes are corrected.
Sun, Feb 16 8:02am · Generalized Sensorimotor Peripheral Neuropathy over my entire body in Neuropathy
When I developed CIDP, I almost went crazy from the itching in my feet. It was worse at night and kept me from sleeping. I woukd get up in the middle of the night to cover my feet in ice packs, the only thing that helped. The itching went away when I started IVIG infusions. Try putting an ice pack on your itchy spot.
I have a serious case of CIDP, with major nerve damage in my legs, so just stumbling around the house with a cane or walker is difficult. (Away from the house, I have to use a wheelchair.) Unfortunately, I also have serious back problems and constant pain. I need exercise for both conditions, but pain makes it difficult. I do stretches and other exercises for my back, but I can’t ride an exercise bike and do any exercises that require being on my feet without support. I can’t get down on a floor mat because I wouldn’t be able to get up again, so I do the lying-down exercises on the bed. I have some atrophy in my legs, which two neurologists have told me will happen with CIDP regardless of whether you walk and exercise. Next week I’m having a peripheral nerve stimulator put in, and I hope it will control my pain well enough to let me exercise more. A friend who is a yoga instructor has given me guidance to moves that won’t over-tax my depleted muscles or cause injury.
I have had terrible pain when sitting since I fractured my pelvis in numerous places (amd shattered my sacrum) in 2015. One fracture at the base of the left pelvic ring, near the ischial bursa, did not heal properly and I was left with nerve damage and a clump of excess bone callus in a virtually inoperable spot. Cortisone injections directly into that area and into the cluneal nerve sometimes helped a little for a short time. It’s been miserable. I sit on a heating pad or ice pack all the time. In the next few weeks I’m having a peripheral nerve stimulator (not a spinal cord stimulator) implanted that will block the pain from that area. I did a one-week trial with the device and it was miraculous. Can’t wait for the permanent implant. You might ask your doctor about peripheral nerve stimulators.