I caved...
 

....and I sent a message to my Primary asking for a referral to pain management. This was Neurology's (UW teaching hospital) recommendation to me last winter. I feel a little defeated by this, but it's time to get some quality back into my life. As nice as my primary is, I want to smack her when she asks, "Do you have numbness and tingling?". Um, yeah...and them some, sister. She means well, I think.

I've been a constant flair cycle with head to toe burning, sandpaper feelings on my face, arms, back and butt. I have facial pain that is getting to be unbearable. The last few days I've been having breathing problems again, much like I did when this awful disease started. My breathing sounds like an 80 year old woman who has COPD.

Small fiber neuropathy sucks!!!! Sorry for the vent, but I'm feeling oh so terrible. Any advice or personal stories about dealing with pain management doctors is much appreciated.

The quick and short response is "Pain mgt. doc the best that ever happened to me."

The longer response......... I was very skeptical about going to a pain mgt. doc. It was not the "miracle" I wanted or expected after first few treatments but continued visits proved to be the best thing ever for me. I just wish I had met my pain mgt. doc 30 years sooner. My life would have been so different. Guess better late then never. Not everyone has the same experience but I adore my pain mgt. doc for the relief he has provided for me.

Sure hope you have a similar experience. Good luck to you.

[QUOTE=Hopeless;1165912]The quick and short response is "Pain mgt. doc the best that ever happened to me."

The longer response......... I was very skeptical about going to a pain mgt. doc. It was not the "miracle" I wanted or expected after first few treatments but continued visits proved to be the best thing ever for me. I just wish I had met my pain mgt. doc 30 years sooner. My life would have been so different. Guess better late then never. Not everyone has the same experience but I adore my pain mgt. doc for the relief he has provided for me.

Sure hope you have a similar experience. Good luck to you.

Wow Hopeless, that is some response. Glad to hear your Doc is helping you! How did PM doctor help you? I have been going for over two years now, all my PM doctor says is I already tried the "first & second line" meds (Cymbalta, Neurotin, Amitriptyline, topamax, Trileptal, Lamictal. etc.) None of those meds worked, or the SE's were bad...Tryed Calmare treatments (similiar to TENS only bigger) , He says Acupuncture wont help for this kind of pain. Nothing works for "my" SFN symptoms.. Im stuck on 300 mgs of Lyrica which is not helping. :( How is your Doctor helping you and what meds and treatments do you get for your pain?
Ty :hug:

OMG does this thing we have, have no end. I'm sorry for what you are going through and I hope the pain management gives you relief.
I was interested in reading about the breathing problems.

It is all starting to make sense along with the numb feet and toes, the pain in the groin and thighs my wife notice a wheezing sound when I was breathing in bed. She said I sounded like an old man, (charming) I told her it comes and goes but I only notice it when going to bed or getting up.

Is that also part of PN or is it part of the others??

[QUOTE=madisongrrl;1165910]....and I sent a message to my Primary asking for a referral to pain management. This was Neurology's (UW teaching hospital) recommendation to me last winter. I feel a little defeated by this, but it's time to get some quality back into my life. As nice as my primary is, I want to smack her when she asks, "Do you have numbness and tingling?". Um, yeah...and them some, sister. She means well, I think.

I've been a constant flair cycle with head to toe burning, sandpaper feelings on my face, arms, back and butt. I have facial pain that is getting to be unbearable. The last few days I've been having breathing problems again, much like I did when this awful disease started. My breathing sounds like an 80 year old woman who has COPD.

Small fiber neuropathy sucks!!!! Sorry for the vent, but I'm feeling oh so terrible. Any advice or personal stories about dealing with pain management doctors is much appreciated.

Sorry to hear your in so much pain madinsongrrl. I feel exactly the way you do. I have been in a constant flair since Sat (sigh) :( with buzzing and burning from my scalp to my stinging, burning toes. I do not have any breathing problems. I do not have any numbness. My BP is low 80/50 sometimes, but I always had normal-low BP..I get light headed alot lately, even when my BP is ok. (I have a BP monitor at home). Sometimes I get nervous and hope my low BP is not related to the N! Yes sfn Neuropathy sucks!!!!! Do you have any other medical problems besides SFN?
Good luck with your pain mngment Doc. I hope they find something that will relieve your pain. I'm stuck on 300 mgs Lyrica...:hug:

I think we all try to put off this step as long as possible. I have dealt with neuropathy for 19 years now and tried everything under the sun for the pain and other symptoms. About 5 years ago I found low doses of narcotics to be helpful...but still suffered to some degree. It was just last month (at the advise of my neuro at Hopkins) that I finally got to see a real pain mgmt doctor (after a long 3 month process to get in) to properly address my pain and give me back some quality of life. I left the first visit crying, not from the pain, but because someone actually talked to me about my pain, listened to me about my pain, and in the end, cared about my pain. That had never happened before. Now I can honestly say I have less pain on a regular basis...I really don't remember the last time my pain level was this low on the scale. I'm sleeping better, feeling better and doing more. I still have flairs and moments with higher pain level, bout overall, I'm happy with my choice and feel like I can (and will) make the most of every day I have now.

Breathing Problems (?)
 

[QUOTE=PhilfromOz;1165919]OMG does this thing we have, have no end. I'm sorry for what you are going through and I hope the pain management gives you relief.
I was interested in reading about the breathing problems.

It is all starting to make sense along with the numb feet and toes, the pain in the groin and thighs my wife notice a wheezing sound when I was breathing in bed. She said I sounded like an old man, (charming) I told her it comes and goes but I only notice it when going to bed or getting up.

Is that also part of PN or is it part of the others??

Hi Phil, I am interested in this breathing problem too.. Sorry I cant help you with your question. I have SFN (ugh) going on 4 years, it really sucks! But I never had any problems with breathing. For me its predominantly painful symptoms. I do not have any numbness. Were you Dx with sfn by skin biopsy, or do you have PN?... Ty
Marie

I don't have any other known medical problems. I was super healthy before all this stuff hit me. This was a pretty big curve ball that life threw at me....and I wasn't ready for it.

[QUOTE=Marie33;1165926]I have PN numbness in toes, feet and pain in legs and groin. No problems with breathing just weezy every now and then. No cold to explain it.

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[ Now I can honestly say I have less pain on a regular basis...I really don't remember the last time my pain level was this low on the scale. I'm sleeping better, feeling better and doing more. I still have flairs and moments with higher pain level, bout overall, I'm happy with my choice and feel like I can (and will) make the most of every day I have now.

Hi en bloc, Glad to hear you are doing better!! What did they do for you at the pain management Place? I have been struggling with painful buzzing, tingling, burning, all of the sfn symptoms for 4 years. Would you mind sharing what you are taking for your pain. I can not find relief. Lyrica is not helping. Im stuck at this dose (300 mgs) and have become home bound and very depressed.. My quality of life is deteriorating..I don't know what to do anymore. My PM Doc and Neurologist are giving up on helping me..Its disheartening to hear them say, they don't know what else to do for me.. sigh!!