[SFNgirl]

Hi, haven't written in a while, been sidelined with this stuff. I see many recent entries from some familiar and some new names about SFN. I just wanted to post that I had a pain pump implanted in early January. I met a wonderful pain management doctor in October, and he was the first to really take this accute, body wide SFN seriously. He was committed to getting me real pain relief, and was first person to mention and then recommend the pain pump.

Though I have had some really bad autonomic issues (they think) since the surgery, the nerve pain has been really well managed. The pump so far is amazing and we are still working on the proper dose. It is filled w fentanyl and bupivicain (local anesthetic) but he thinks mainly the bupivicain is working. We may manage out the fentanyl all together. I'm far from pain free but this really helps tremendously for my bottom, hips, legs and feet. I have discontinued methadone, Vicodin, tramadol and Nortriptyline, all of which I was taking until the pump!

Just thought I'd share as I haven't seen the pump mentioned in the context of SFN. It can't do anything for the autonomic symptoms but for the pain it is amazing.

For me the SFN came on out of nowhere, mainly lower body, but attacks in jaw/face, some hands and arms, and now with bad autonomic issues, in my stomach, digestive track, sweat glands, blood pressure, etc. Though so much of this is just lumped into idiopathic SFN and my docs admit they really aren't sure about all of my symptoms and have no patients with some of these serious nausea and temperature type stuff.

[dogwalker]

Originally Posted by SFNgirl

Hi, haven't written in a while, been sidelined with this stuff. I see many recent entries from some familiar and some new names about SFN. I just wanted to post that I had a pain pump implanted in early January. I met a wonderful pain management doctor in October, and he was the first to really take this accute, body wide SFN seriously. He was committed to getting me real pain relief, and was first person to mention and then recommend the pain pump.

Though I have had some really bad autonomic issues (they think) since the surgery, the nerve pain has been really well managed. The pump so far is amazing and we are still working on the proper dose. It is filled w fentanyl and bupivicain (local anesthetic) but he thinks mainly the bupivicain is working. We may manage out the fentanyl all together. I'm far from pain free but this really helps tremendously for my bottom, hips, legs and feet. I have discontinued methadone, Vicodin, tramadol and Nortriptyline, all of which I was taking until the pump!

Just thought I'd share as I haven't seen the pump mentioned in the context of SFN. It can't do anything for the autonomic symptoms but for the pain it is amazing.

For me the SFN came on out of nowhere, mainly lower body, but attacks in jaw/face, some hands and arms, and now with bad autonomic issues, in my stomach, digestive track, sweat glands, blood pressure, etc. Though so much of this is just lumped into idiopathic SFN and my docs admit they really aren't sure about all of my symptoms and have no patients with some of these serious nausea and temperature type stuff.

I'm really sorry to hear about all you've been through, but glad that you've gotten some degree of pain relief. I also have SFN with autonomic issues, and symptoms which are constantly morphing into different ones; thankfully not to the severe degree that you've had to endure. I seem to have partial characteristics of several conditions but not enough of any one specifically to "qualify" for a diagnosis. I just wanted to say that I understand how frustrating it is when the doctors can't figure you out. Especially with autonomic occurrences that are physically observable and not subjective like pain.

[hopeful]

Hi,
Just want to say I'm glad you are getting relief. I too have SFN. It is a quessing game trying to figure out what caused it all. I suppose the reason is not important it's the relief that matters!