somisgirl
@somisgirl
@somisgirl
Posts: 18
Joined: Jul 18, 2019
Ideas for pain relief from Small Fiber Neuropathy (SFN)
I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.
I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves…worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)
I don’t know if any of this could be helpful for you or not, But I seem greatly improved recently……I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.
Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!
jager5210
@jager5210
@jager5210
Posts: 94
Joined: Apr 14, 2019
@burningfeetinphoenix, @iceblue, And so….here is another person with similar SFN experiences. I started on Cymbalta a year ago…in a graduated dosage of 20 mg, 40 mg, 60 mg, over a three month period. I experienced the benefits of the medication the very first week. I even questioned moving the dosage up the scale. I did get the sense that my body was becoming accommodated to the medication and that more might be needed to stay on top of things.
Initially, this medication was prescribed for pretty severe anxiety about the pain which was creating more pain which then created more anxiety and the cycle just ramped up. Today right before my appointment with my PCP I am trying to see what the status quo is now so that I can give her accurate and authentic feedback.
It is good to read that the Gabapentin is working for you. Do you only take it at night? Do you find that your hands and feet have less tingling and numbness? Does that mean your extremities are pain-free?
May you both be free of suffering….Chris
Does anyone know of a doctor who indicated their SFN symptoms were a function of stress? Is stress an actual component of pain levels or is just doctor BS?
Liked by Chris Trout, Volunteer Mentor
rwinney
@rwinney
@rwinney
Posts: 1593
Joined: Apr 28, 2019
Does anyone know of a doctor who indicated their SFN symptoms were a function of stress? Is stress an actual component of pain levels or is just doctor BS?
Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.
rwinney
@rwinney
@rwinney
Posts: 1593
Joined: Apr 28, 2019
Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.
Cymbalta is a highly prescribed medicine for nerve pain which also treats anxiety and helps counteract stress/pain.
Chris Trout, Volunteer Mentor
@artscaping
@artscaping
Posts: 1387
Joined: Jul 11, 2017
Does anyone know of a doctor who indicated their SFN symptoms were a function of stress? Is stress an actual component of pain levels or is just doctor BS?
@jager5210, Good morning. That is a good question. I am scheduled to see two of my medical providers today and tomorrow. I will ask them that question.
We do know that stress exacerbates many medical conditions. It was suggested that I review my stressors. I eliminated two big ones and replaced them with mindful meditation, daily yoga practice, and my mentor activities.
Can you identify stressors in your life? What might they be and can you modify or eliminate them?
Have some joy today. Chris
Liked by Lisa Lucier
helennicola
@helennicola
@helennicola
Posts: 215
Joined: May 27, 2019
Does anyone know of a doctor who indicated their SFN symptoms were a function of stress? Is stress an actual component of pain levels or is just doctor BS?
I have not experienced a connection that I am aware of nor has my neuro mentioned any connection. I do know that stress can have a negative influence on many conditions so maybe it depends on the individual.
kansasgal
@kansasgal
@kansasgal
Posts: 19
Joined: Feb 05, 2019
@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back to him on my results. Have you red his studies on this Phenytoin topical? My Pharmacist said it has to be used within 30 days as the medicine will lose its compounded after that time period. At least that is true for the 10% topical. I am hopeful this will work for my feet! Pam
Good to know about the 30 days. Yes, I read the Dr. Kopsky report, that's why I requested the cream. John had posted a link to the study.
kansasgal
@kansasgal
@kansasgal
Posts: 19
Joined: Feb 05, 2019
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
@kansasgal Same here. I am getting the 10% compounded. 5% may have a longer "shelf Life". Better ask. Pam
rwinney
@rwinney
@rwinney
Posts: 1593
Joined: Apr 28, 2019
Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.
lisa53
@lisa53
@lisa53
Posts: 10
Joined: Feb 08, 2019
I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now – unless I get exposed to gluten – then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations – which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do – but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything – fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first – and if you do have Celiac Disease – get a nutritionist to help you. Most of all, remember that the diet gets easier.
rwinney
@rwinney
@rwinney
Posts: 1593
Joined: Apr 28, 2019
I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now – unless I get exposed to gluten – then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations – which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do – but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything – fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first – and if you do have Celiac Disease – get a nutritionist to help you. Most of all, remember that the diet gets easier.
This is great to bring up because it opens the door to anyone who has not had an extensive and thorough workup by their neurologist.
Every person diagnosed with SFN should have "the works" to determine your underlying cause. If you neurologist does not take this route then you have every right to ask for it, as long as you can afford of course.
My workup took 4 months to complete….from blood work to spinal tap. Leave no stone unturned.
Liked by Lisa Lucier
iceblue
@iceblue
@iceblue
Posts: 179
Joined: Sep 30, 2019
I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now – unless I get exposed to gluten – then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations – which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do – but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything – fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first – and if you do have Celiac Disease – get a nutritionist to help you. Most of all, remember that the diet gets easier.
Wow! That is really interesting!. I was tested for celiac several years ago, but the results were negative – so that's not my issue.
jager5210
@jager5210
@jager5210
Posts: 94
Joined: Apr 14, 2019
@jager5210, Good morning. That is a good question. I am scheduled to see two of my medical providers today and tomorrow. I will ask them that question.
We do know that stress exacerbates many medical conditions. It was suggested that I review my stressors. I eliminated two big ones and replaced them with mindful meditation, daily yoga practice, and my mentor activities.
Can you identify stressors in your life? What might they be and can you modify or eliminate them?
Have some joy today. Chris
Here's the thing…I don't have any stress in my life, outside of my health issues, that wax and wane in correspondence with my pain levels
kansasgal
@kansasgal
@kansasgal
Posts: 19
Joined: Feb 05, 2019
I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now – unless I get exposed to gluten – then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations – which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do – but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything – fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first – and if you do have Celiac Disease – get a nutritionist to help you. Most of all, remember that the diet gets easier.
I was tested for Celiac and was negative. I asked my GP because my son was diagnosed with celiac disease about 20 years ago. The diet is soo easy now, with all of the gluten free items. I used to have to make his bread with about 6 different flours (rice, tapioca, etc) in a bread maker used for only gf flours.
@iceblue
For context it's important to know that this is only the fourth night that I've taken 300 mg of Gabapentin. Having said that: Yes, I only take it at night. I have experienced virtually no tingling in my hands and feet at this dosage. I have never experienced numbness so cannot speak to that. I have been pain free for three solid days – and that includes the burning, and the aching and stiffness that I had attributed to arthritis or some other sort of structural issue with my feet….
The only down side is that it appears to have caused my insomnia to resurface. I only work part time and only have 3 weeks left in my contract – so I'll supplement with Zopiclone on work nights until the term is done. When I'm not working it doesn't matter that I'm up until 3 AM 😉
Liked by Chris Trout, Volunteer Mentor