1. < Neuropathy

Non-Length Dependent Small Fiber Neuropathy

Posted by kathleen123 @kathleen123, Feb 22, 2021

there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.

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

Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 3, 2023
In reply to @emo "I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al...." + (show)
@emo

I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al. I don’t tolerate medication well and so I’m afraid to try them.

I do take LDN, but I see you were taking it, and it mysteriously stopped working. Would you try a higher dose? You didn’t mention your dosage, but I used to take 4.5 mg and increased to 6 mg.

One thing you could talk to your neurologist about (if you have one) would be testing you for the FGFR3 antibody. There’s ongoing research at Washington University in St. Louis on this antibody. Your sample would have to be tested there. It’s associated with small fiber sensory neuropathy. If you have abnormally high levels of the antibody, you may qualify for IVIG or plasmapherisis (sp?). There’s not much research, and it’s hard to get it covered by insurance, but it’s intriguing if you truly want to try very medical intervention. I’m considering it.

Otherwise, I’ve had good success with PT, specifically for chronic pain (graded motor imagery) and/or you may want to consider a chronic pain rehabilitation similar to what Mayo offers if you’re not comfortable with medication (I am not). Or a pain management doctor, as @daj3333 mentioned.

It is tough and really unfair, both that this happened and that the medical system is not set up for treating chronic pain conditions. There may still be options out there. It stinks it takes so much digging to get to them, but we’re with you and can relate.

Jump to this post

Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55 mentions, LDN worked, then it didn't. Maybe tweaking the dose will help.

Management looks different for each person. I agree, the medical system is not set up for treating chronic conditions and how people are affected by them through a comprehensive manner. No specialist gives strategies and tools along side a prescription. It took me a lot of trial and error since being diagnosed with SFN and CSS.

@daj3333, and others who are struggling with neuropathies and chronic pain disorder -

Mayo Clinic's Pain Rehabilitation Center was truly a game changer for me and may be worth consideration. Here's an over view of the program which is offered at all 3 Mayo locations - Minnesota, Florida and Arizona:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

If you're curious about others experience at the PRC, these conversations may be helpful -

Mayo Clinic Pain Rehab Center: Whats your experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

Mayo Clinic Pain Rehab: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

And for the cherry on top, Dr. Sletten who heads up Florida's PRC, breaks down chronic vs acute among much more in this video:

Dr. Christopher Sletten - Central Sensitization Syndrome:

We're all in this together and certainly not alone. Strength in numbers and sharing. I look forward to hearing feedback, insight or questions. Have a pleasant evening. Stay hopeful!

REPLY
2 replies
emo | @emo | Aug 4, 2023
In reply to @rwinney "Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55..." + (show)
@rwinney

Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55 mentions, LDN worked, then it didn't. Maybe tweaking the dose will help.

Management looks different for each person. I agree, the medical system is not set up for treating chronic conditions and how people are affected by them through a comprehensive manner. No specialist gives strategies and tools along side a prescription. It took me a lot of trial and error since being diagnosed with SFN and CSS.

@daj3333, and others who are struggling with neuropathies and chronic pain disorder -

Mayo Clinic's Pain Rehabilitation Center was truly a game changer for me and may be worth consideration. Here's an over view of the program which is offered at all 3 Mayo locations - Minnesota, Florida and Arizona:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

If you're curious about others experience at the PRC, these conversations may be helpful -

Mayo Clinic Pain Rehab Center: Whats your experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

Mayo Clinic Pain Rehab: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

And for the cherry on top, Dr. Sletten who heads up Florida's PRC, breaks down chronic vs acute among much more in this video:

Dr. Christopher Sletten - Central Sensitization Syndrome:

We're all in this together and certainly not alone. Strength in numbers and sharing. I look forward to hearing feedback, insight or questions. Have a pleasant evening. Stay hopeful!

Jump to this post

Thanks for sharing! I may be an outlier who hasn’t completed a chronic pain rehabilitation program, but is still a chronic pain rehab, or at the very least a “central sensitization awareness” evangelist.

I believe I’ve mentioned this before, but the program nearest to me which is also very reputable just isn’t/wasn’t accessible for me. I got very lucky and the stars aligned, and I had a PT and health psychologist who taught me about central sensitization, and we worked together to customize a plan to improve my pain and quality of life.

I do so wish more people and more providers would be more familiar with central sensitivity, the biopsychosocial model of pain in practice and not just in theory so that more of us in pain could benefit and know there are other highly effective (and in some cases in my opinion, better and safer!) options other than a pill.

I have some pain that’s improved that I’ll never know for sure but I’m fairly certain would never have improved with medication. I always would have needed pain rehab (or what I call “chronic pain PT” because most of my work came from PT), which makes me feel so grateful I was able to have that experience even if it was less conventional.

I really, really encourage folks in pain to consider a program like Mayo’s chronic pain program, and if that’s not possible to look into ways to implement aspects of it on your own or with resources in your area. I don’t think you’ll regret it.

REPLY
exitframeleft | @exitframeleft | Aug 4, 2023

@kathleen123 I was DX with Idiopathic patchy NLD SFN about a year ago. My symptoms are only located in my feet for now: tingling, numbness and burning pain. Meds are 3600mg gabapentin, 25mg Amitryptiline, & compound ointment as needed. They keep the burning pain in check, except for when I walk a lot at work, which unfortunately happens a lot. I really hope I don't develop symptoms up my body like others have, but we know with this DX that the doctors only treat the symptoms so we just have to learn to push through it as best we can.

REPLY
daj3333 | @daj3333 | Aug 4, 2023
In reply to @rwinney "Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55..." + (show)
@rwinney

Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55 mentions, LDN worked, then it didn't. Maybe tweaking the dose will help.

Management looks different for each person. I agree, the medical system is not set up for treating chronic conditions and how people are affected by them through a comprehensive manner. No specialist gives strategies and tools along side a prescription. It took me a lot of trial and error since being diagnosed with SFN and CSS.

@daj3333, and others who are struggling with neuropathies and chronic pain disorder -

Mayo Clinic's Pain Rehabilitation Center was truly a game changer for me and may be worth consideration. Here's an over view of the program which is offered at all 3 Mayo locations - Minnesota, Florida and Arizona:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

If you're curious about others experience at the PRC, these conversations may be helpful -

Mayo Clinic Pain Rehab Center: Whats your experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

Mayo Clinic Pain Rehab: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

And for the cherry on top, Dr. Sletten who heads up Florida's PRC, breaks down chronic vs acute among much more in this video:

Dr. Christopher Sletten - Central Sensitization Syndrome:

We're all in this together and certainly not alone. Strength in numbers and sharing. I look forward to hearing feedback, insight or questions. Have a pleasant evening. Stay hopeful!

Jump to this post

Do you have to be a patient at Mayo to get an appointment at their pain rehab center. I was unable to get an appointment with a neurologist at Mayo in Jacksonville

REPLY
2 replies
emo | @emo | Aug 4, 2023
In reply to @daj3333 "Do you have to be a patient at Mayo to get an appointment at their pain..." + (show)
@daj3333

Do you have to be a patient at Mayo to get an appointment at their pain rehab center. I was unable to get an appointment with a neurologist at Mayo in Jacksonville

Jump to this post

Unless it’s changed since I looked into it, I don’t believe so. But you would need a physician referral from your own physician. You can call and they’ll walk you through what you need; they’re very helpful.

REPLY
1 reply
daj3333 | @daj3333 | Aug 4, 2023
In reply to @emo "Unless it’s changed since I looked into it, I don’t believe so. But you would need..." + (show)
@emo

Unless it’s changed since I looked into it, I don’t believe so. But you would need a physician referral from your own physician. You can call and they’ll walk you through what you need; they’re very helpful.

Jump to this post

Thank you!

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 4, 2023
In reply to @daj3333 "Do you have to be a patient at Mayo to get an appointment at their pain..." + (show)
@daj3333

Do you have to be a patient at Mayo to get an appointment at their pain rehab center. I was unable to get an appointment with a neurologist at Mayo in Jacksonville

Jump to this post

No, you do not need to be a patient at Mayo. As a matter of fact, I was turned down for evaluation there because they said current local doctors in New York could continue to help me with my diagnoses. That's when I chose to apply to the Pain Rehab Center.

Here is a link to apply to Mayo Clinic:
http://mayocl.in/1mtmR63

You can choose whether you wish to apply online or request a phone call and speak with a human. Everyone at Mayo is extremely helpful and accommodating.

Are you considering applying to the PRC in Jacksonville? Fantastic place, and hands down, Dr. Sletten is a phenomenal doctor who heads up the program there.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 4, 2023

Here you go -

Mayo's Physical Medicine and Pain Rehabilitation:
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/conditions-treated/orc-20467056

POTS and Fibro are listed as conditions treated. The PRC treats both as well, but in a more comprehensive, all inclusive approach to body and mind, including medication weaning.
Try this one, too-
Mayo's Outpatient Rehabilitation Care in Minnesota:
https://www.mayoclinic.org/departments-centers/outpatient-care/overview/ovc-20467216

Or General Internal Medicine:

https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870

Honestly, I think you still apply through the same link regardless of where you want to go and then narrow it down. I prefer working with a person so I can ask questions and be directed accordingly.

Let me know if any of these links narrow down your search. Which location are you interested in?

REPLY
daj3333 | @daj3333 | Aug 4, 2023
In reply to @rwinney "No, you do not need to be a patient at Mayo. As a matter of fact,..." + (show)
@rwinney

No, you do not need to be a patient at Mayo. As a matter of fact, I was turned down for evaluation there because they said current local doctors in New York could continue to help me with my diagnoses. That's when I chose to apply to the Pain Rehab Center.

Here is a link to apply to Mayo Clinic:
http://mayocl.in/1mtmR63

You can choose whether you wish to apply online or request a phone call and speak with a human. Everyone at Mayo is extremely helpful and accommodating.

Are you considering applying to the PRC in Jacksonville? Fantastic place, and hands down, Dr. Sletten is a phenomenal doctor who heads up the program there.

Jump to this post

I’m not planning on applying to the PRC at this time but may do so if I get worse.

REPLY
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