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Anyone here dealing with peripheral neuropathy?
Anyone here dealing with peripheral neuropathy?
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Anyone here dealing with peripheral neuropathy?
Interested in more discussions like this? Go to the Neuropathy Support Group.
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Here's hoping you are close to the top of the schedule for procedures when they open up Lori!
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1 ReactionEnjoy those gummies to the furthest extent that is possible! 🙂
Hi, I'm new to the group. I suffer from idopathic peripheral neuropathy so I'm very interested in what works for others that I could try. However, I'm frustrated in my quest because so many of the participants use shortcuts to identify different therapies or medicines they use. I have no idea what DRG, SCS and all the other abreviations mean. I realize that many of you have been on this site for some time and I'm sorry for the pain you're experiencing. If you could, the first time you mention one of these items please spell out what the letters stand for then in () add the abreviation after the words. Then to your heart's content go ahead and use the abreviations.
Thanks
James
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3 Reactions@jesfactsmon I have bad pain with my neuropathy and I take pain pills when it gets bad. Does your wife take pain pills? Of course if I have any THC in my urine they will stop prescribing me pain pills.
@jamesinsonoma All of the abbreviations can be hard to keep up with.
(Adding to what I wrote in the following post yesterday: How long have you had the diagnosis of PN? Have you tried very many treatments? If you're like me, multiple doctors have had me try many, many meds, along with an SCS implant and seeing a pain therapist.)
I also have idiopathic small fiber polyneuropathy (sfpn) Sfn is small fiber neuropathy. Almost 3 years ago I had a Burst DR spinal cord stimulator implant (scs), and for the first year I had 75% pain relief. After the first year, the pain began to return, so I would make an appointment with the company rep to adjust the settings on the controller. This became a 3 month process. Around the end of last year the adjustments stopped helping. At the end of February I turned it off to see how much it was doing, and I couldn't feel any change. I turned it back on a few days ago and my pain hasn't slowed down at all. My feet and ankles have bad burning pain, so the neurosurgeon I met with last fall talked to the guy who does the controller adjustments to suggest a different approach. It hasn't helped.
Moving on, I had an appointment with the doctor to discuss a new treatment, a drg implant (dorsal root ganglion), which targets more specifically the nerves that are causing problems.
If you have time, it could be helpful if you go back in the discussion and read what others have written about sfn, scs drg, etc.
Jim
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2 Reactions@jamesinsonoma
I added some other thoughts to this post for your consideration, in parentheses.
I know I run across acronyms frequently. PN is peripheral neuropathy, but could be polyneuropathy, AN for autonomic neuropathy, OA for osteoarthritis, HX for history, ECT for electroconvulsive therapy, PT for physical therapy, PCP for primary care physician, PNP is psychiatric nurse practitioner, etc (et cetera)... I can't imagine cataloging all of them. But given the current covid19 isolation, this might be a good time to try. (I'm not sure what covid19 means exactly.)
Each specialist has their list of medications they might prescribe for pn, in my experience, at least. I had a nerve conduction study (NCS) maybe 10 years ago because I was feeling tingling and pins and needles in my feet and legs. I was given the diagnosis of PN, but I didn't do anything to treat it until the numbness and after that the pain kicked in. My PCP prescribed me the standard neuropathy meds - Gabapentin, and others that I don't remember. Then I started seeing a neurologist who had a list beyond that of my PCP. Next in line was a pair specialist, whose list was the longest. I tried everything that might remotely treat my nerve pain. At some point my pain was labeled intractable, which means nothing helps. BTW, it's pretty much the same with treating depression. I started taking morphine sulfate contin, and that's the only medication that touches the pain, though it really only takes the edge off the pain. A few meds have helped for a little while; some had no effect; some helped but had unacceptable side effects (most notably Lyrica).
As I mentioned earlier, the SCS implant was great while it lasted. The man who has done the adjustments to the controller suggested that I consider a drg stimulator, which led me to a neurosurgeon who is wonderful. She said that the drg stimulator is kind of a last resort, and she wanted to be sure I tried all of the options (which I surely must have) before going ahead with the drg implant.
(In summary, James, these are the things I've tried. You have probably tried some of them. Of course, what hadn't worked for me could well be just the treatment you need.)
Many here will attest to the fact that the search for pain relief can be a very long, very difficult, often frustrating journey. We all hope that someday a magic pill will be discovered. But until that time, we go down the lists of treatments that have helped some people. Each of us is unique, so the right treatment is unique to each of us. Unfortunately for some, treatment options run out eventually, even psychological approaches. (The good thing about this and other discussions is that we're always reading about new approaches that might improve our quality of life.)
Isn't life great?!?
Life is good. I'm grateful for good doctors, for a nice place to live out in the country, for Medicare, for a good church, and for the woman who's loved me (most of the time) for 49 years. And God is good.
Good to meet you, James.
Jim
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3 ReactionsGood morning all. I'm finally scheduled for Mayo's 3 week pain rehabilitation program to begin June 18th through July 9th. I'm overwhelmed, excited, happy, scared, concerned etc...Covid has turned things upside down. Also, I am faced with anxiety simply because it will be a daunting task physically and mentally. M-F 8:30-4:30 for 3 weeks.
It's taken over a year to get to Mayo and I'm very grateful that I'm going, dont get me wrong. I know I will be in the best place possible for proper evaluation, support and encouragement. I will fall back on my tools of diaphragmatic breathing, meditation and mindfulness. I will pull up my BIG girl pants and make it happen!
Be well and I hope everyone has a manageable day. 😊
Rachel
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3 ReactionsVery best of luck Rachel. My wife Linda and I are VERY interested in your experience with this. We watched the video yesterday with Dr. Sletten which you had mentioned. I must admit I did not really understand some (much) of what he was talking about but I was surprised that Linda seemed to get quite a bit out of it and was enthused about it. I guess I need to see it again. Anyway, will be interested in your adventure in Fla. Wow, 8 hours/day for 3 weeks, that sounds very intense! But exciting also. Rachel, could you remind me a little about your pain situation again and where you have the worst of it. Thanks, Hank
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2 Reactionsthat is wonderful news Rachel! I wish you the best of luck, you will do great because you have all the mental tools and positive attitude needed already. 😁 Helen
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2 Reactions@rwinnwy Glad you finally got an appt to start in June that is great hope it sure helps you
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