1. < Neuropathy

do you see a neurologist and/or rheumatologist small fiber neuropathy

Posted by albiet @albiet, Feb 10, 2020

im getting more and more troubled by what i am feeling. the past year and a half has passed me by. the only option i was given was to take additional drugs - either neurotin or lyrica and they both sound like the medicine would have worse side effects. the other option is to switch from what ive been on Imipramine, to cymbalta. Im confused.
i was thinking of seeing a rheumatologist but not sure if i should. does anyone here with SFN see a rheumatologist

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020

This may be of no value but, before I was diagnosed with SFPN and was desperately searching for answers, I saw a rheumatologist. That Dr told me I did not have fibromyalgia but had cross-over symptoms and recommended Lyrica. I've done, Gabepentin, Lyrica, Cymbalta and Nortriptyline. I've landed firmly on Lyrica (worth it if you can get beyond side effects) and new to the game is Nortriptyline. I took myself off of Cymbalta to have one less pill in my system as that was the one I felt was not a game changer. I griped for more pain relief to my PCP recently and he came up with adding Nortriptyline verses increasing hydrocodone. My neuro agreed to try. And round and round we go. I hear you when you say you are confused. Same boat here.

REPLY
2 replies
Robin | @birdierobin | Feb 10, 2020
In reply to @rwinney "This may be of no value but, before I was diagnosed with SFPN and was desperately..." + (show)
@rwinney

This may be of no value but, before I was diagnosed with SFPN and was desperately searching for answers, I saw a rheumatologist. That Dr told me I did not have fibromyalgia but had cross-over symptoms and recommended Lyrica. I've done, Gabepentin, Lyrica, Cymbalta and Nortriptyline. I've landed firmly on Lyrica (worth it if you can get beyond side effects) and new to the game is Nortriptyline. I took myself off of Cymbalta to have one less pill in my system as that was the one I felt was not a game changer. I griped for more pain relief to my PCP recently and he came up with adding Nortriptyline verses increasing hydrocodone. My neuro agreed to try. And round and round we go. I hear you when you say you are confused. Same boat here.

Jump to this post

I’m so sorry ya’ll have to result to such horrible drugs with horrendous side affects. I can’t do it, they have a horrible affect on me!

REPLY
1 reply
healingone | @healingone | Feb 10, 2020

Please see my response to rwinney @rwinney. (Aching legs from Small Fiber Neuropathy)

It would not let me cut and paste here.

Have a great day!

REPLY
1 reply
albiet | @albiet | Feb 10, 2020
In reply to @rwinney "This may be of no value but, before I was diagnosed with SFPN and was desperately..." + (show)
@rwinney

This may be of no value but, before I was diagnosed with SFPN and was desperately searching for answers, I saw a rheumatologist. That Dr told me I did not have fibromyalgia but had cross-over symptoms and recommended Lyrica. I've done, Gabepentin, Lyrica, Cymbalta and Nortriptyline. I've landed firmly on Lyrica (worth it if you can get beyond side effects) and new to the game is Nortriptyline. I took myself off of Cymbalta to have one less pill in my system as that was the one I felt was not a game changer. I griped for more pain relief to my PCP recently and he came up with adding Nortriptyline verses increasing hydrocodone. My neuro agreed to try. And round and round we go. I hear you when you say you are confused. Same boat here.

Jump to this post

@rwinney thank you for your reply. I still don’t have a main dr so I’ve been shooting darts trying to figure out what can help. What dr do you get your med from. Is it one dr or many that prescribe meds for u

REPLY
1 reply
albiet | @albiet | Feb 10, 2020
In reply to @healingone "Please see my response to rwinney @rwinney. (Aching legs from Small Fiber Neuropathy) It would not..." + (show)
@healingone

Please see my response to rwinney @rwinney. (Aching legs from Small Fiber Neuropathy)

It would not let me cut and paste here.

Have a great day!

Jump to this post

@healingone thank you. I will look for it

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @albiet "@rwinney thank you for your reply. I still don’t have a main dr so I’ve been..." + (show)
@albiet

@rwinney thank you for your reply. I still don’t have a main dr so I’ve been shooting darts trying to figure out what can help. What dr do you get your med from. Is it one dr or many that prescribe meds for u

Jump to this post

It's a mixed bag between my PCP, Neurologist and rarely Pain Management.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @birdierobin "I’m so sorry ya’ll have to result to such horrible drugs with horrendous side affects. I..." + (show)
@birdierobin

I’m so sorry ya’ll have to result to such horrible drugs with horrendous side affects. I can’t do it, they have a horrible affect on me!

Jump to this post

Hi Robin. I may have eventually come to tolerate these drugs but by no means am I happy about needing them. All so unfortunate. I wish you well and hope you are able to find what helps you.
Rachel

REPLY
1 reply
albiet | @albiet | Feb 10, 2020
In reply to @rwinney "It's a mixed bag between my PCP, Neurologist and rarely Pain Management." + (show)
@rwinney

It's a mixed bag between my PCP, Neurologist and rarely Pain Management.

Jump to this post

@rwinney how are you on a daily basis? Are you able not to think about pain?

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @albiet "@rwinney how are you on a daily basis? Are you able not to think about pain?" + (show)
@albiet

@rwinney how are you on a daily basis? Are you able not to think about pain?

Jump to this post

Haha, I wish. My pain is chronic...in one form or another, unfortunately. I will say that distraction and mindfullness is very beneficial but can't hide my problems 100%. For example... a pleasure to me is being at my daughter's basketball games. Well, anything I do comes with cause and effect therefore, there are a plethora of hurdles I contest with to be at her game. That's just the way it is. At times I can endure these circumstances and times when I can't. Pretty much about what I can mentally endure because physically I face many challenges. Who knows, maybe I can be rewired one day like a cyborg! What about you? Are you able to not think about pain? What do you do for distraction?
Rachel

REPLY
Robin | @birdierobin | Feb 10, 2020

This sounds funny but when my pain hits me (which is a 12 on a scale of 1 to 10) I just freeze in my tracks and I shut my eyes and I think about something pleasant I just stand there completely frozen in space and time and after a while it quits! I’ve been doing this since May 2011

REPLY
View MoreView Less
Please sign in or register to post a reply.