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Ideas for pain relief from Small Fiber Neuropathy (SFN)

Neuropathy | Last Active: Apr 26 7:21pm | Replies (449)
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@katec

Thank you so much for all your suggestions and insight!

We tried a DRG (dorsal root stimulator) last summer but he didn’t see any relief from it. This was done by a pain specialist before we had a diagnosis of SFN, this was back when the pain doctor was just trying to treat his pain. We’ve been to a few pain doctors before we had a diagnosis and they have been pretty nice and have tried many meds, nerve blocks, etc and it’s always challenging to find one willing to work on a kid. Now that we have an official diagnosis we haven’t been back to a lain doctor since his primary doctor is working on a treatment plan for him while we wait for the last of the genetic testing to come back. We are in a bit of a holding pattern right now as his SFN doctor is a bit surprised that he hasn’t responded to any medications yet. The doctor is talking to “other experts” to see what direction we should go in. I feel confident in our doctor, it’s just hard explaining to a 15 year old boy who is in pain all the time, he has to hold tight while we figure this all out. It’s been 4 years since his pain started and only 5 months since we found out it’s SFN, so he knows this isn’t a quick fix😉

Thank you for everyone’s advice! I’m always looking for answers for him and it’s nice to be part of a group that “gets it”!!

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Replies to "Thank you so much for all your suggestions and insight! We tried a DRG (dorsal root..."
Rachel, Volunteer Mentor | @rwinney | Oct 28, 2019

I'm happy to hear his Dr is working on a path forward. Care and commitment is so very important. My daughter is 18 and has different diagnoses with different challenges but, challenges nonetheless. I feel both you and your sons pain.
All the best,
Rachel

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Jim, Volunteer Mentor | @jimhd | Oct 28, 2019

@katec I'm surprised that he had a drg. That's, according to the surgeon I talked with, pretty much a last resort. She wants to work on a few other things before we go that route. My scs was wonderful the first year or so. Now it needs fairly regular tweeking, roughly every 3 months. It's been a balancing act for a while, trying new medications without overlapping each other, then not knowing what's causing what. You understand. It gets complicated. It's plenty hard for seniors developing sfn, but having it as a teenager is a whole different level. I don't know how I would have handled it at his age. Just being a teenager carries with it a lot of challenges. Is he doing ok mentally and emotionally? I began having sfn symptoms several years after I started being treated for clinical depression, anxiety disorder, PTSD and suicidal ideation. Having chronic, intractable pain piled on top of those mental health issues is hard to cope with.

I've always known that being a whole person meant integration of the physical, mental, emotional and spiritual. Each part of our self affects the other parts. Speaking for myself, as pain increased, so did my level of depression. I have to stay aware of my mental health when I'm not well physically or spiritually. My doctors do a good job of treating all of me. My PCP, for example, always asks about my depression and other issues.

I'm certain that you are feeling a lot of stress and distress, watching your son in pain. Take care of yourself so you can be there for him.

Jim

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