Got my results back today. Both punches were positive. I'm going out of my mind right now. I can't figure out how I'm going to live. What am I going to look like in 5 years? Will I able to walk? Talk? Go to the bathroom? What happens to people with sfn? I don't even remember what the doc said. It was my pcp cud my neuro is away until end of June. He couldn't tell me much, said the neuro needs to look at it. I asked if he was positive about the results he said yes.

Please, some responses here. What does severe sfn look like 5 years from now?

Hopefully Debi will see your post. Her profile is under St George 2013. She has sfn for the past few years. I believe she is currently under Pain Care Management.


Gerry

ah heck CG I am sorry to hear that. I know you have been looking for answers for so long and yet it doesn't feel like the hoped for relief when finally getting them. I can't answer your question since I belong to the CRPS club but I wanted to reach out with a Kleenex and a hug. I hope this at least gives some direction to your treatment and allows you to move forward to the dealing with it phase and out of the "what the heck is it" phase.

Sending extra Healing Love, Littlepaw

No one can tell you what it will look like. Many people have relatively slow progress. Debi (St. George) and I have similar biopsy results and are on pain management with pretty strong drugs, I am on MS Contin, she was on BuTrans patches last I heard. We have different causes for our SFN, mine is hereditary, but our biopsies revealed no nerve fibers at lower leg, so about as bad as it can be. My biopsy at upper thigh showed the fibers breaking down, that was five years ago.

Did your doctor give you an indication of the actual results? Were the nerve fibers reduced or totally absent?

This has been a lifelong process for me, although the numbness started in my toes about 20 years ago. I have had leg pain for as long as I can remember, gradually getting worse. I have used a hiking pole to help me walk for the past 5 years, now I use a wheelchair occasionally, especially if I will have to stand for any length of time. I still go for walks, but am weakening. Steps and inclines are very difficult and I am getting AFO's, ankle foot orthotics with bracing to help with dragging my toes and ankle weakness.

It has taken me a long time to get this bad, with age (I am 53) the deterioration seems to have sped up. I was pretty strong for a long time. I would concentrate on keeping as healthy as possible, using what muscles you can, even if it requires pain medication to exercise it is worth it. Do not focus on the long term unless you absolutely have to, if moving in the future, for example, one floor might be prudent. Same with job opportunities. But don't live with "what ifs?" unnecessarily. No one can predict the progress of this disease.

Do you feel any sense of relief at having your symptoms confirmed? I know that was huge for me even though it was a severe diagnosis.

I'm oddly still in denial...my Dr gave me numbers but I don't remember. All I know is that Dr said I just fell in range of abnormal. He didn't Indicate condition of fibers.

I just had a small inkling of hope that this was anxiety like all the Drs said and I feel like I've just been hit by a train. Handed a life sentence of misery that will only get worse. Everything I've read says it gets worse. I'm this bad and it only took a year to get here. what will I be like next year?

Hi Canagirl
I've been away so only just caught up with your post.
Sorry that your results for SFN are positive. Sometimes having a definitive diagnosis can be just as devastating as living with the symptoms. From following your earlier posts I know you've had a very difficult time but you always seem willing to explore all possibilities to search for causes and treatments. Don't stop now you have a diagnosis - that includes pain management and your start already on Gabapentin can be included in whatever pain management program is worked out for you. You have nothing to lose by going to talk to them (get recommendations for a good clinic in your area) - and you always have the right to postpone or refuse treatment. I can't emphasize enough how important it is for you to manage your own health - especially a chronic condition. As others have said keep monitoring your treatment and progress.
Try to find some enjoyment each day with your family and be kind to yourself.
Take care canagirl and keep us posted.

Hi CG,

It never hurts to get information. I was also resistant to PM but am ultimately glad I went. I talked to three doctors to find one I was comfortable with. You can always go talk with PM and if that doc rubs you the wrong way go talk to another one. Yes it is doctor shopping but If they are going to take care of you for a long time it is important to have trust and confidence.

PM does have things to offer and may come up with something novel. English Dave gets lidocaine infusions and I am getting ketamine for neuropathic pain. When I met my doctor the first time I told him I wanted to try things besides opiates and he set me right up for the infusions, which do seem to be helping. Pain begets pain. There is benefit in getting it under control. You will rest and feel better. If nothing else the longer your pain goes unchecked the stronger pain memory you will have. That alone is reason to see what they can do for you.

sending hugs