I was pretty surprised to see an active community discussing SFN. I have searched in the past but never found anything of substance.
I've spent the past hour reading past threads and posts. My sympathy truly goes out to everyone with this disease. I have had it since May 2004 (Age 24) and I am still unable to fully describe my symptoms and the mental strain this has taken on me.
I am looking forward to speaking with many of you in this community as I have never spoken with anyone that has SFN.
Briefly, have seen every doctor, performed all the tests, taken all the pills. My father being a physician (specialist) has afforded me access to Drs. and various treatments nothing of which has made the slightest impact.
It kills me to say western medicine is not the least bit familiar with this disease. The technology is inadequate, research is underfunded, low priority from the medical community. In essence there is No Hope. Because of this I feel Hopeless, which is unmistakenly reflected in my daily attitude and demeanor.
Lastly, I recently had a spinal cord stimulator implanted in my lower back. This is basically a last resort tactic for someone such as myself who has been in chronic pain for 5 yrs. There is a love/hate with the device, I go in cycle's using it or not. I would be happy to answer any questions for someone contemplating this procedure. Good Luck.
Hello. I have been suffering with SFN since Jan. 2005. JeffersonGuy, I was just wandering if you had the skin biopsy to confirm SFN? Do you know what has caused this at your young age? You are so right about the research. One thing that does help us is the research of diabetes. A lot of people with diabetes suffer with SFN but don't know what to call it b/c doctors are not up to par on this disease. I am lucky to have a GP and a neuro. that are both familiar with this illness and they actually listen to me. I take Lyrica, notriptyline, and trileptal. Before I found this drug combo that works, I was in constant pain. I have been on these for almost a year at the same doseage and can honestly say with thankfullness that the break through pain has been minimal. It took almost 3 years to find this combo so don't lose all hope.
I did have the skin biopsy. My results were abnormal from the specimen taken from the thigh and normal from the ankle...Which is rare. Didn't surprise me because this entire illness has been a mystery and why would I show any normal pattern.
I am interested to see everyone taking a "cocktail" of pills. I only took them one at a time, my Dr. never recommended more. He seems smart, he his my 4th Neurologist and the only one to recommend the skin biopsy. My last drug was Lyrica, I was up to 600mg/day and it was doing nothing.
My concern was that these prescription drugs cure a problem and create a new one. I was tired of taking pills being prescribed by people who don't really understand them. Now everyone here has me wondering if I should have been taking a "cocktail" and whether that might help me.
Last edited by Administrator; 05-08-2009 at 12:59 AM.
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I was pretty surprised to see an active community discussing SFN. I have searched in the past but never found anything of substance.
I've spent the past hour reading past threads and posts. My sympathy truly goes out to everyone with this disease. I have had it since May 2004 (Age 24) and I am still unable to fully describe my symptoms and the mental strain this has taken on me.
I am looking forward to speaking with many of you in this community as I have never spoken with anyone that has SFN.
Briefly, have seen every doctor, performed all the tests, taken all the pills. My father being a physician (specialist) has afforded me access to Drs. and various treatments nothing of which has made the slightest impact.
It kills me to say western medicine is not the least bit familiar with this disease. The technology is inadequate, research is underfunded, low priority from the medical community. In essence there is No Hope. Because of this I feel Hopeless, which is unmistakenly reflected in my daily attitude and demeanor.
Lastly, I recently had a spinal cord stimulator implanted in my lower back. This is basically a last resort tactic for someone such as myself who has been in chronic pain for 5 yrs. There is a love/hate with the device, I go in cycle's using it or not. I would be happy to answer any questions for someone contemplating this procedure. Good Luck.
Hi there,
I was just wondering what area of pain your spinal cord stimulator is treating, if you've had it implanted in your lower back.
I have had chronic back pain for the past nearly 11 years & have had 2 scs trials, none of which have worked. Did your trial work on the 1st attempt? also did a pain management doctor do the operation or did a neurosurgeon do it?
I've to go back to my pain managment doctor in 6 weeks time, I had my 2nd trial wire taken out today & am hopeing that my pain management doctor will refer me to a neurosurgeon to have a 3rd try because like you have done, I've exhausted all other methods of pain releif & my only options now is a neurosurgeon do the 3rd scs or having the pain pump implanted.
Your advice would be greatly appreciated & I hope your scs gives you some good pain releif for many, many years to come xx
I was pretty surprised to see an active community discussing SFN. I have searched in the past but never found anything of substance.
I've spent the past hour reading past threads and posts. My sympathy truly goes out to everyone with this disease. I have had it since May 2004 (Age 24) and I am still unable to fully describe my symptoms and the mental strain this has taken on me.
I am looking forward to speaking with many of you in this community as I have never spoken with anyone that has SFN.
Briefly, have seen every doctor, performed all the tests, taken all the pills. My father being a physician (specialist) has afforded me access to Drs. and various treatments nothing of which has made the slightest impact.
It kills me to say western medicine is not the least bit familiar with this disease. The technology is inadequate, research is underfunded, low priority from the medical community. In essence there is No Hope. Because of this I feel Hopeless, which is unmistakenly reflected in my daily attitude and demeanor.
Lastly, I recently had a spinal cord stimulator implanted in my lower back. This is basically a last resort tactic for someone such as myself who has been in chronic pain for 5 yrs. There is a love/hate with the device, I go in cycle's using it or not. I would be happy to answer any questions for someone contemplating this procedure. Good Luck.
Can you tell me what part of your body the stimulator is treating. I have a implant now but it has been put in at the wrong place and must be redone. My problem is with my feet and the original place they thought you should place the lead is in the thorassic area, they now say they are getting better results putting the leads in the lower back. IM hoping to talk with some one who has the implant for their feet in the lower back. I like you have tried everything you can imagine. I would appreciate any info you might have on the implant. I hope its helping you some as I know how incidious this disease can be.
Hello Jefferson guy your post sounds like you are describing me. I had a spinal cord stimulator also implanted in Dec 08 as the last resort but it's so-so. It's not the answer I was so desperately seeking. I had a spinal fusion back in Nov 06 L3-S1, and a Laminectomy on L5-S1. When I came out of surgery I had right foot numbness I mean total foot which I did not have before I went in. It's also affected my left foot s1 distribution. Nerve damage I just don't know what type I have. I need a really good doctor that willing to at least try to help me. It's really hard dealing with these issues and doctors treat you as if you are making this stuff up and feeding you meds that don't work. Really frustrating. You take care of youself and hope to talk again.
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Faith is the substance of things HOPED for, the evidence of things not seen.
Hebrews 11:1
