Peripheral nerve stimulators
This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.
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I'm putting this post under this discussion because ultimately nerve stimulators are the main point. First let me tell you what kind of a day my wife Linda is having. She felt so good today she wanted to go out to her favorite grocery store and shop. Shop! The last time she was out was in late February, to the same exact store. She put on a brand new mask (her first one!) and a pair of latex gloves and was ready for action. She got dizzy in the car and dizzy sometimes in the store. To her a drive in the car is A LOT of movement. She's had trouble in cars since she was diagnosed with fibromyalgia back in 1992 but it's worse now, quite a bit worse. After we were in the store a while she had to hang on to me for the last half of her wanderings, she was so unsteady. The trip was fun for her, just being out. She loved it. But her feet suffered. They were so red and swollen (lobster feet) by the time we got home and she looked like someone who had just been through a terrorist attack, very dazed and stooped from the pain. I think she is starting to think that this is going to be her life from now on and it's a hard pill to swallow (as most of you know). This is why I hold out hope for a nerve stimulator of some sort to maybe get her feet back from the brink. It has been a steady progression from 2014, little by little and now it's gotten to where neither of us is certain she will ever be able t travel to see family again (Connecticut mostly). I think just getting the procedure done is going to be a trial. Lori @lorirenee1 is going through that now. I am hoping to hear how @fredjan2016 does with his peripheral Nalu stimulators as that seems less invasive and simpler. I can't remember if anyone on Connect has been through it (the peripheral nerve stimulators) all the way successfully yet or not. I know Sandy @sparshall is hopeful she will ultimately have a good result. Is that still true Sandy? Would love to hear how it's going for you. Anyway, just wanted to tell someone about our adventure today. Best to all, Hank
@jesfactsmon Hi Hank, Your post about Linda made me cry. It is the happiest, saddest account of your day. I had no idea Linda had not been out in such a long time. To go out today, with such enthusiasm, and have such frightening results is just chilling. Do her feet normally turn like lobster feet? CRPS came to my mind when reading your description. I have a history of fibromyalgia, but never had trouble with motion. This is a new one to me. I do know that in one day, I could go to feeling decent to horrific with the whatevers of Neuropathy. I would get very pissed off from excruciating pain, and go and vacuum rooms in my house. Sometimes the pain would be excruciating, and I would walk down the street like the angry warrior. I could have 2 days in a row where I was pain free, and the next, could not bear how bad it was. When was the last time Linda has been to a neurologist? I want to tell you that today, I see the DRG as promising. I am exhausted emotionally, but I do notice a lot less pain, and balls of feet are less like solid concrete. Toes feel less stuck together. I want to talk to Linda, Frank. I think it is time I talk to her. Maybe we can all speak on speaker phone, or arrange a zoom conference. I have no idea how to do this, but my husband does. My heart goes out to you and Linda. Leading a life like she is leading is unfair. Just unfair. We cannot be on this earth to suffer so. Get back to me Hank, when you can. I will get here as soon as I can. Lori
@ jesfactsmon I do relate to Linda's outing filled with joyful emotion, adaptation and maybe some anxiety? I am incredibly happy she made it out of the house, in the car and to a market. This was a big day for her (and you)! It is burdensome that we pay the price for simple pleasures when we live with neuropathy, fibromyalgia, chronic pain disorders, etc…
I gave up driving last December at the height of my debilitating pains. Pain made me reclusive and I did not like it but I grew comfortable. I became afraid of igniting more pain by leaving my house. I became at odds with riding in a car with various discomforts and pains, from movement and jarring, to sound and lights. I developed anxiety from all of it. I knew I had to force myself out of my safe zone to find whatever normalcy was going to mean for me. Every time I pushed to go out, I paid a price but knew it was mentally healthy to tackle and accomplish, even if it meant I was bed ridden after and down for the day or night. Never did I like any of it and still don't. I'd get quite resentful that the bad presented, which means I lost focus of the good that presented. Mindfulness…always a student.
After a long winter of this, I started to believe my body was shutting down from lack of use. It's stated that excercise, movement, stretching is relevant to neuropathy. Practicing yoga or tai chi is beneficial and must be done as tolerated but, still done. Well, I did minimal stretching and that's about it. By April I mysteriously started to feel let up in certain places (maybe from myofacial release, maybe spring was in the air, maybe supplements kicked in, maybe the stars alligned). My point is I pushed little by little, in and out of pain and realized with every movement, like planting a flower pot, I was completely over stimulating my muscles. Bending to pull a weed set my legs on fire. I'm now able to do a smidge better with a bit less pain and I'm happy for that. I made my first drive in the spring as well. It was nerve wracking. I felt out of sorts and my body wondered what the hell I was doing! I had tried before but my body went nuts. So, there is my small progress…I drive maybe once or twice a week, 5 – 10 minutes max to one small destination like CVS. Sometimes I still put the car in park at a light to save my leg. It feels wonderful to have that independence back and I listen to my body when I cant do it. Many days the legs put me down without choice.
I've babbled too long. I just hope Linda knows I feel her frustration, sympathize with her pain and rejoice in her happy moments of which I hope will become more often. I hope she is motivated still, somewhere inside, to keep her fight and not let her feet win completely. I'm impressed with her day and hope more can be had. How about a portable wheel chair for the next grocery trip? Be well Hank and Linda. All the best to you both.
Hi Lori, I think Linda's driving issues (started in 1983-4 or thereabouts) were attributed by us to fibro after we knew about her fibro, but learning about the existence of the condition Central Sensitization lately in discussions with you and Rachel not long ago makes us both factor that into the equation. She is and has been super sensitive to pretty much everything her whole life or certainly since we've been married. And when she was younger and more able to cope it was not a problem. Now that her body seems to be weakening it's becoming a problem. Especially noticeable since about April of '19. I mark it to after she took a steroid for a sinus issue, perhaps in March-ish of '19. She got her first severe itch problem maybe in April? It was bad for a while, quite bad. After a few months it seemed to be less of a problem. But her energy is taking a hit from the endless foot burning. Never stops but varies between a 2-3 level sometimes to 7-9 most of the time or maybe 65% of the time. Thank god she sleeps! That is a saving grace. Lori I think you are dealing with much more pain than Linda is (and that is saying something). When you describe your situation it boggles my mind. I am SO HOPEFUL for you and the drg install you are trying. My fervent hope is that you keep the 40% relief and get even more, much more after you have the actual installation assuming you do. I hope something like this can help Linda. I am dubious only because she is so sensitive that things that might help a regular person can backfire bigtime for her. So many things that other people recommend because it has benefitted them seem to do the opposite for her. She is just getting ready for bed (I just got up -we tag team – long story) but tomorrow I will read her your post with your suggestion to talk and let you know. You are a very good lady Lori. It's hard to believe so many fine people are having to cope and deal with SO MUCH just to be able to jst do the basics and live their lives. Sheesh! I appreciate this website so much as it really helps in so many ways to have it. Thanks my friend, will be in touch. Hank
Hi Rachel, please forgive the length of what follows. I don't know why I didn't just do one encompassing response to you and Lori together, should have. But anyway, yeah, the driving thing. I admire that you are not giving up, that is really good. Keep doing it as you are. I think Linda is at the point where she just can't do it. Her reaction time seems to be not great now. And that makes her hyper nervous to be a driver. She last drove the car on a short local drive last year, possibly August or Sept. Since she rarely leaves our condo now and since I am always around anyway there is no need for her to drive really. But this deterioration of her overall condition this past year has our attention. I also hear you about exercising. Whatever you can do to get yourself to do. It ain't easy that is for sure. I do wish she would push a little more to do some. Easy for me to say, most days she just doesn't have the extra energy for doing any. I got her this vibration machine about a year ago that she stands (or sits) on and it moves around forcing her muscles to compensate for the different positions it puts you in. Even that is hard sometimes. She also tries to do these videos by Marie Esmonde-White. She does these half hour shows of basically body movements and stretches, lots of stretching. Very good actually. I can't do them myself because Marie tends to talk a lot (mostly about nothing) and I get annoyed after a while. Even with the sound off I see her mouth moving constantly and it is distracting. Rachel, you amaze me with what you deal with, shoulders head and neck issues; and then the legs! The legs seem like the worst. We have a wheelchair from Linda's Aunt who passed in 2010 but I hope we can do without that for a long time. So far Linda can walk thank god.
Oh, one thing Lori @lorirenee1 asked is when Linda last saw a neurologist. That would be never. She got the neuropathy 2 days after her last chemo infusion in 2014 and because it wasn't horrible at first we just kind of relied on learning about it online. Anyway at that time we had bigger fish to fry, i.e. we were trying to figure out a way for her to lick cancer without chemo or radiation. We figured that one out in August of 2015 (after her last cancer outbreak that year) with the discovery of something called Haelan 951 (Google it if interested) and cancer is no longer an issue. And we haven't thought about a neurologist because Linda thought "What is a neurologist going to fo? It's obvious I have neuropathy" so she's been coping with it best she can and I retired in 2016 to be her caregiver to whatever extent she needs.. So there you go. Neither of us put a lot of trust in doctors. And Linda does not do well with drugs anyway and we both believe in just living a healthy lifestyle as much as possible. And of course there is Faith. That underpins everything. Ugh! I know what you mean about going on too long. Sorry. Thanks for your post Rachel, you're the best. Hank
@jesfactsmon Good morning. Thank you for your reply. You 2 sure have been through the wringer. There is so much to each person's story, once you dig in, and I'm very impressed by Linda's courage and tenacity to keep going. She has been through alot and I can feel, she is a survivor. And you, riding shot gun, takes tenacity, love and dedication. I commend you both. I'm happy to hear Linda does the best she can with movement. That is a big part of the Mayo program….to find each persons speed. I hear you on the Neurologist bit, what can they do typically but prescribe pills and provide procedures. Linda's dealings with so many Drs overtime surely warrants her dismay to see another. I'm glad you've found Connect and can learn from others to give you some insight. Here's hoping for another beautiful day for you and Linda (don't forget the flowers!). I had a surprisingly good day yesterday and staying positive for another. Be well.
A survivor definitely! Thanks for the reminder on the flowers, I'm so spacey. Well, off to deliver blood for the Red Cross. L8R. Hank
@jesfactsmon @rwinney Hi, Hank and Rachel, Just read your most recent posts, and what we all go through just to survive one day astounds me. Just to drive a car for a bit, just to pull a weed….the determination of the human spirit, is all I can say. Rachel, you are just such a survivor. I know you agonize, but you do utterly everything to survive. You are awesome. Just awesome. You amaze me. Linda tries so hard. She is like a delicate flower. Hank, I do think, for whatever it is worth, and I may be wrong, that Linda should at least see a neurologist. Maybe something has been missed, and her condition is worsening. Maybe if only for blood tests. Neurologists do blood tests specific to neuropathy. The problem is, there isn't much treatment at all. But just in case something has been missed. Maybe it is time. I also think that maybe Linda needs evaluation for physical therapy. Maybe a one hour intake evaluation, to see if anything can be done. Has Linda been on elavil? That can help symptoms of the fibromyalgia. After my breast cancer surgery, I was not regaining strength very well. This was even before my neuropathy set in. My doctor insisted that I do physical therapy, and once the neuropathy set in, I swear, the physical therapy gave me enough strength in especially my legs, to at least be able to walk well. All through my neuropathy, I get very pissed off. I release my anger by walking. Sometimes, the greater the pain, the more I walk. I am so thankful to do this, and I know I could not with the original Physical therapy. Please, Hank, have Linda get assessed. As I write, I am thinking of Rachel. I know Rachel does everything she can to do her best. I would like Linda to do even more. I know Hank, that only you see Linda, and know how hard she tries. I hope I am not out of line. I am assessing based on what you write, and want the best for her. One other thing, Hank. I used to get terrible sinus infections many years ago. The doctor once prescribed a steroid inhaler for the sinus infection, and I wound up with major Panic attacks from the inhaler!!!! A very good doctor recognized this, put me on Xanax, and panic attack symptoms went away. He also prescribed an herbal product from the Nature's Sunshine Company, called ALJ. It is currently marketed as "Seasonal Allergy," formerly ALJ. If I get a headache around the bridge of my nose, I only take ALJ. You can get it on line. Just type in ALJ, or Nature's Sunshine Company. I have recommended this product to 2 people. Both managed not to have sinus surgery by using it. I want the best for Linda. She definitely, like Rachel and I, has Central Sensitization. Rachel, LInda, and I are like delicate flowers that pack a punch!!!! OY!!! Life is so precious. Life is so fragile. That is why I can gluttonize on Chocolate Chip ice cream. Sometimes ya gotta do, what ya gotta do. Hank, if you want to talk on the phone, or whatever, let me know. You too, Rachel. I am here for you guys. Hang in. With love, Lori
Thanks Lori, what friendship! OK, so I have to bring Linda up to date on these posts since yesterday by you guys. Then we will discuss everything and I'll let you know the outcome of that. She is her own person with a will much stronger than mine so it's all up to her. That said, I appreciate you and she does too, she loves hearing all that you guys have to say. Will post again when I can (got a busy couple of days here today & tomorrow). Best, Hank
@lorirenee1 YOU ROCK!!!! 😇