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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!
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Hi John,
Thanks again for your work and sharing on this board. I've gotten in most of the supplements required to start the regimen you said helped you. I also saw my old neurologist Friday and he said he would get me a referral to Mayo. My question to you is whether it's worth it? I can't keep up with all the postings on this board but I do not recall anyone saying that their visit to Mayo really helped them. Please correct me if I'm wrong.
I seriously suspect my neuropathy is related to some long-standing gut issue. I'm wondering if I would be better served trying to get a referral to Dr. Hymen's Functional Medicine Clinic at the Cleveland Clinic?
Recently, all my issues have really flared up. My feet are now both painful and numb to the extent that walking is awkward and painful. I'm concerned about losing mobility. With your numbness in your feet, is your mobility impaired? What is the eventual resolution of SFN? Do you know?
Thanks again,
Barry
Hi Barry @jager5210, That is a really tough question for me. I can share my own experience with small fiber peripheral neuropathy and just the numbness. I think the supplements I'm taking have slowed or stopped the progression but it is really subjective on my part. I haven't had any additional testing done to prove it other than it's about the same as it was over three years ago when I was diagnosed with small fiber PN at Rochester Mayo. I only have numbness so when I asked about treatments my neurologist told me there were no medications or topicals that would help with the numbness which started my search and is how I found Connect. I'm 76 now and just had my right knee replaced in April and recovered quite well in part I believe in doing the pre-surgery and post surgery exercises. I still can't walk very far but it's more due to my lower back than my legs and I do watch my balance especially when I first stand up after sitting for awhile. I'm planning to try Myofascial Release Therapy as soon as I can find an accredited therapist close to my location or after I retire in December. I'm hoping it will help my lower back so that it's easier to walk.
You mention you suspect your neuropathy is related to a long-standing gut issue. May I ask why you believe that? I don't personally believe there is a cure or resolution for SFN other than treating the symptoms and improving the quality of ones life so if it were me and I thought it may be a gut issue that could be fixed I would definitely get a second opion from and health a major health facility like the Mayo Clinic, Cleveland Clinic or other major hospital.
I hope you find some answers that help you.
John
@jager5210, I went to Mayo Jax for my chemo induced neuropathy. I was told the same as John. Nothing could be done as long as all I had was the numbness.
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2 ReactionsBoston Scientific makes a SCS (spine cord stimulate) that helps/
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2 ReactionsHi John, Again, thank you for your reply as well as the other two I received. I guess the only reason I would go to Mayo is to see if my gut issues underlie my SFN. I believe there is a connection because my pain and symptom expression has varied greatly over time and there seems to be some mediating variable. I have long standing gut issues which I have not found anyone in Atlanta to address...3 gastros & 1 holistic practice. My attempts to get help with this issue rivals my experience at Emory which advertised a 'holistic, multi-disciplinary' approach to neuropathy where the Ukranian doctor said to me; "Why don't you just go home and die" and "Why don't you just make an appointment with Dr. Google" I guess because I referenced Dr. Perlmutter who sends me emails. By the way, I'm always polite and respectful so it's hard for me to explain my experiences. Dr. Mark Hymen, director of the Functional Medicine Center at Cleveland Clinic and Dr. Perlmutter, a neurologist on the Internet & PBS, have a lot of articles and interviews with researchers exploring the relationship between our gut and brain. Dr. Hymen just had one on his Farmacy Series, not pharmacy but Farmacy I believe, with a researcher who believes there is C-Diff bacteria from the gut in all the major neurological diseases, Alzheimer, ALS, MS and Parkinson as well as a possibility of it being a cause of many cancers. Leaky gut lets bacteria & viruses into your body which cause all kinds of infections and disorders. Anyway, I just have gut issues along with all my other issues. It is interesting to hear these doctors dismiss or minimize the 'comorbidity' diagnosis and, instead, argue that there is one body and likely one 'something' wrong thing that is causing multiple problems. Their approach is to find and treat causes and not to 'treat' symptoms. So I just wonder if I could get my gut issues fixed, would I see a corresponding improvement in my nerve network.
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1 Reaction@jager5210 I do tend to think like you that our body can have multiple health conditions that can cause similar symptoms and if we can find out the different causes we can improve our help the related symptoms. I do have to preface that with I have no medical training or background but if it were so cut and dried like some suggest there would not be so many people with hard to diagnose issues.
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1 ReactionJohn, I have so many symptoms I don't know where to turn! I'm told I have Chiari and they want to do surgery, I can't get them to listen to my symptoms! My nerve damage is HELL! Pain meds don't help! Lyrica did for a while! I don't know what to do, I'm so sad and the pain never ends! I have burning,stabbing,feels like elec.shock in.my hands,numbness,and neck,and headaches! It's on my left side from the waist up and now my right hand! Anymore out there with idea's please God help me???
@resawaller, I am sorry to hear you are in so much pain. I would like to again suggest an earlier response I made - have you discussed your feelings about the surgery with your surgeon? Maybe you can discuss the positives and negatives of possible outcomes with the surgeon to hopefully make you more comfortable having the surgery. Are you able to take a family member with you to the appointment? That way they can help support you and ask questions you would like answered as to options for treatment to help relieve the pain.
Also, have you thought about getting a second opinion? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.
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1 Reaction@jager5210 Hi Barry. You might be able to work some things out for yourself. You can explore the possibility of food allergies or sensitivities that can cause inflammation that leads to leaky gut. That happened to me when I developed a gluten problem, and before I figured this out, a lot of food allergies followed because the leaky gut let incompletely digested food enter the blood stream. You can test this yourself with an elimination diet and see if you can improve. Diet can have a huge impact on health or disease and you probably already have knowledge about healthy foods, but you can still be allergic to healthy food. Avoiding foods like sugar and highly processed carbs that cause inflammation helps a lot too. You can add a good pro-biotic to start colonizing the gut with good beneficial bacteria which can over time replace the bad bacteria. There are also some medical foods from Metagenics or Orthomolecular for detoxing and reducing inflammation, and they also have some supplements to kill off bad bacteria before you start a detox. These products are expensive and sold by doctors offices and specialty pharmacies and you can find them online.
You could just start with foods in your diet to see if that is a cause of your gut issues. You start by eating one thing for a few days until you feel better. If that goes well, add one other thing. Keep track, and when you add something that makes you feel bad, write that down on your list to avoid. It will take awhile to figure things out. This is what I did long ago when my doctor would not listen to me about gluten and back then even the existence of celiac disease was controversial. I developed these issues suddenly after the stress of going through surgery years ago. Initially I thought I had a wheat allergy, so I was baking bread with spelt and that was fine for awhile, but then I started reacting to that, and I tested through diet to figure it out, and everything with gluten made me react and a few times I ate things with gluten (a rice milk product) unknowingly and still reacted. I have been gluten free for 20 years. I also had sharp pain in my hands that ended when I took dairy out of my diet. It is usually the specific proteins in foods that cause the allergies, and I can use butter without issues because it is the fat from milk. FYI- with all the gluten free foods available today, junk food is still just that with or without the gluten. Gluten can be in so many things and you can find information online about that. Humans did not evolve eating grains, but during biblical times, the cultivation of grain in agriculture allowed the population to grow and survive with the additional food sources.
Here is some information about gluten and celiac disease. Even if you are not gluten sensitive, you might feel better without it.
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
https://celiac.org/about-celiac-disease/what-is-celiac-disease/
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3 Reactions@jager5210
Just a suggestion (as C.dif is easy to test for)... tell your PCP or anyone at an Urgent Care Clinic that you've had ongoing diarrhea for weeks, despite taking a probiotic, and that you're concerned that it may be C.dif. They will give you a lab order... the lab will give you a test kit... your results will be returned in about two days. If it's negative, that's a good thing and it will relieve your mind. If it's positive, then you have something for a gastro doctor to work with. No, I'm not a proponent of lying to the doctors, but sometimes one needs to clear obsessive thoughts which may be getting in the way of your healing.
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