Thank you so much for your response. His “flare” has gone away for now. Makes me wonder if it’s stress related (all that’s going on right now) or just the disease taking its course….I’m sure some of both!
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@rwinney Rachel, we are still working with insurance regarding the IVIg. They’ve been pretty difficult (losing forms, saying they’re incomplete, etc) but our doctor has been great in following up with them. I’m actually supposed to call insurance today for an update so fingers crossed!!
@jimhd Your prayers are so appreciated!! I cannot thank you enough for them!
He had a DRG trial last summer. He didn’t get any relief from it (no ill effects either other than with the trial device it’s awkward to move around with the wires and tape) and it baffled the drug rep and pain doctor. He would feel the sensations of the DRG in all the right places (where he had pain) when they would adjust it but it never provided any pain relief. It was disappointing, but it was just added to our long list of things tried for pain relief that failed. So far, we still haven’t found anything. Insurance is still reviewing his case for IVIg, so even though it’s taken a long time, at least they haven’t said “no” yet! If he does get approved, who knows when he could start it with the quarantine.
We have some lidocaine that’s been prescribed in the past that I will offer him if it bothersome tonight when he’s winding down. This quarantine is tough on him because he can’t go on walks or hikes around the neighborhood because it just hurts so much, but he has all this energy and desire to do stuff. Since it’s supposed to stop raining this week, we will heat up the pool for him but since he’s a kid he’ll want to run around it, wrestle with his brother, jump around etc so he’s in pain then too. Oh well, one day we will find something that works for him!
I hope you have great success with your DRG, if that’s the route you choose to go. Everyone deserves to not be in pain and do the things they want to do!!
Stay safe and busy during this quarantine!!
@artscaping thank you so much for your input! He’s having that burning pain on top of his thigh just like you described. Right now it sounds more like a nuisance and just new so he’s unsure about it. I will def let him know to tell me immediately if his pain/burning travels anywhere else, especially to his torso!! This is all new to us, so I really appreciate your thoughts!! Thank you!
Thanks Rachel! He hasn’t been too descriptive with this new pain other than calling it burning. He had this one other time on his wrist when he was on Gabapentin, so I just assumed it was the drug. I’ll run it by his dr, but I thought this group would have an immediate answer for me and I was right!! Thanks so much! I always appreciate your input and advice!! I hope you are feeling well!!
Hi everyone! I hope you’re all doing well with the quarantine. We are hanging in there!!
I have a question about small fiber neuropathy. As you know, my 15 year old son has it. His only symptom so far (4 years now) has been severe pain on the bottoms of both of his feet. Today he’s complaining of a burning sensation when his shorts touch a certain place on his thigh. I know SFN is sometimes called the burning syndrome, but I thought it was more of a widespread type of burning, not just a small spot (size of an iPhone). Have any of you experienced this before? Just the patchy burning? Thanks so much!!