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

Posted by albiet @albiet, Feb 10 4:49pm

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

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.

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@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.

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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!

Liked by rwinney

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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!

Liked by rwinney

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@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.

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@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

Liked by rwinney

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@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!

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@healingone thank you. I will look for it

Liked by healingone

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@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

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

Liked by dckuke

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@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!

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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

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@rwinney

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

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

Liked by rwinney

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@albiet

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

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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

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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

Liked by lorirenee1

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@rwinney

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

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Rachel, I hope they continue to help you! So far freezing in my tracks works I can’t flinch a muscle twitch or anything just freeze and it stops because it’s nerves

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@albiet

@healingone thank you. I will look for it

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I sent you the transcript for one of the videos and the Mayo description of the program.

I am unable to send the YouTube link.

I hope this helps.

Have a great day!

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@albiet

@healingone thank you. I will look for it

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You are very welcome.

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@healingone what we’re your issues prior to going to the program and how did it help. How long ago have you finished and are you still with reduced pain

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Before the program, I was non-functional.

I found out that I could self refer, naming all the multiple body systems challenges when I talked to registration.

The first doctor I saw at Mayo was an Internist. I ask her to put me through the mill and tell me all of the diagnoses I was dealing with and what I could do to to increase my quality of life. The Internist sent me to several specialists and a lot of testing. The specialists sent me for additional testing. In the end of my Jacksonville stay, I was diagnosed with Central Sensitization with Fibromyalgia.

Other diagnoses I have include: Chronic Pain Syndrome, Chronic Fatigue Syndrome, PTSD, Autism Spectrum disorder, Depressive Disorder, Generalized Anxiety Disorder, ADHD, Obstructive Sleep Apnea, Hashimotos, Hypothyroidism, Diabetic Kidney Disease, Type 2 Diabetes, Peripheral Neuropthy, Vitamin D deficiency, Mild Cognitive Impairment, Chronic Active Epstein Barr, Chronic Inflammation.

I attended the Pain and Rehabilitation Program over 2 years ago and my challenges are still lessened.

I had and extremely good experience at Mayo and recommend it to everyone.

Have a great day!

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