Recently diagnosed with Small Fiber Neuropathy - so many questions

Chris - where would one go to get MFR? Do you know if it’s a therapy normally covered by insurance? Thanks, Debbie

@johnbishop This is truly helpful. I have had numbness and occasional tingling w/o pain in both toes to mid-foot for the past 10 years, which seemed to correlate with when my microscopic colitis began but it is getting worse. Not having diabetes or having had chemo, I blamed in on aging and a crushing injury I had to one of my feet years ago. It was the bilateral nature of the numbness that clued me in. I also have severe osteoporosis. Lots of new surprises in my 7th decade. Aging is not for sissies. Appreciate your wisdom and that of @artscaping . It's a huge offering of kindness and compassion to be helping all of us.

Thanks Chris. He's doing ok. Had a rough patch where he lowered his gabapentin to 200mg/day and stopped taking the doxepine all together. Even though the dose of doxi that he was taking was so low that it had to be compounded, stopping and lowering these 2 meds was somewhat of a disaster. He's back to taking 600 - 900mg of the Gabapentin and 5mg of the doxipene and while he's still in pain every waking hour—doesn't have pain when asleep—he's doing much better. He liked the MFR that he was having done but the drive (1 hr each way) wasn't worth it. He is sticking with the acupuncture and I work on him almost every day which often puts him right to sleep if it's the evening. Having said all that, he's been very physically active. And for those who might read this and don't know the history, his idiopathic peripheral neuropathy causes burning, itching, tight pain particularly in the feet and the tightness extends to the calves.
Chris, I thought about you the beginning of the year knowing that you were going in for more surgery. How are you doing now? Did the surgery help with the issues you were having other than the neuropathy? Are you still doing the blue light therapy for your neuropathic itch at the dermotologist?
Sending you love and light.
Michelle

Hi Chris-my husband found a MFR therapist who was a licensed occupational therapist too so insurance covered his treatment.

I am 93 years old and reading about so many people with neuropathy it has given me suggestions .Since the last email I have seen a Neurologist .He had blood work done on the Gabapentin and B 12 in my blood. The Gabapentin was was reduced from 1200 to 900 but my B 12 level is good.I have Neuropathy and sciatic pain from past back surgeries..I now massage my feet at bed time, a good suggestion .Take Tylenol if in pain but try to take only at bed time.Try to walk in the house and standing for any length of time is hard for me .When resting during the day laying down is best rather than sitting in a chair.I bought the Bombas slippers but slippery to use on my hardwood floor.Take CBD at bedtime in drop form but not sure if it really helps or not.The dr suggested I use a walker since by balance is not good .My children feel Gabapentin has changed my personality but I think it is age related.Busy taking care of my husband that is 98 years old.Chelly fields

Hi there, madam @oceanlady22.
How does the Salonpas work for you? I have seen the ads on TV but haven't heard of anyone using them. Of course, if they are sexy....that may be enough. I wanted to mention something to you about the 78 degree temperature. I have actually been told to reduce the temperature during the night. I was waking up in a sweat and my PJ's were soaked. I now keep the night temperature between 69 and 72. I think I do sleep better with less pain. And my PjJ's stay dry. Just a thought.

Chris

Good Morning Chris, I will try lowering the thermostat. I swear by the Salonpas with Lidocaine. I use it on my side for the scar tissue I have from radiation. I slept pretty good last night with the Salonpas on my calves with the 2 pair of socks. Got up at 1:30 am went right back to sleep. I got up again with pains in my left calf & bad pain in my hands at 4am. I decided to stay up. I try not to take painkillers at night & save them for the daytime. I hope you have a good day. Today may reach 75 and I'm hoping the warm weather helps. Last Spring & Summer I was at chemo & radiation so it truly was a Lost Summer.

Maveric09

Maveric09
Hi I had skin biopsies to confirm SFN. it is progressing from toes up shins. My neurologist now, insurance wouldn't pay for my prior neurologist, she doesn't know that's much about SFN. I talked to hear after my own research about the autonomic neurological effects of SFN. She agreed that it is likely i have it too which affects BP, heart, etc.
I feel alone in my pain but have a great Lyme disease doc. All day I developed the polyneuropathy from Lyme and 3 co-infections.
I was paralyzed 3× back in 2000 but recovered each time with therapy. But the pain stayed which is constant.
I am so frustrated that no one has effective treatments. I am allergic to Gabepentin and Lyrica made me gain ton of wt.
Have they tested you for Lyme? I was a Park Ranger we think when I got it.
I have asked my neurologist for another EMG/NCT as its seems spreading. But that's months away.
Few of my docs gave heard of SFN and ant understand the severe pain.

Hello there @julkun -
Do I ever hear you loud and clear! You have your finger on the pulse by understanding that you're mentality and your brain are your biggest foes in fighting chronic symptoms. It seems odd because we know that our brain, via our spinal cord, is where our pain stems, but you, like me, seem to be ready to proactively think outside the box. Congratulations on a big step!

Thank you to my friend @artscaping for tagging me in the conversation. Chris is a great role model and one of my OG Connect inspirations.

Julkun, I was where you are now and had had it with Dr. hopping trying to find a "fix", taking medication after medication, injections, infusions, ablations, nerve blocks, etc... It burned me out and was actually having an adverse affect on me physically and mentally. I lived with creams, ice packs, heat packs, neck and back pillows, all sorts of pain behaviors which I was blind to see at the time because of desperation and little self-awareness. My head was up my you know what.

You mention severe pain periods and losing your ability to think positive. Yup, I get it, but it cant stop you. You are worthy, you are smart, you have value, you have ability. It is very hard to not be caught up in full concentration of pain, but it is not all your life can be. My life was that and I was ruining myself, and it was no joy ride for my family either. I searched for a better way and found it by attending Mayo Clinic's Pain Rehabilitation Program where I learned tools to strengthen my mind and body and refocus on how to manage and live with chronic pain and symptoms and live a better quality of life.

I'm attaching an amazing video by Mayo Clinic's Dr. Sletten that pin points exactly what happens when we continue to let our life box be small and remain in a hamster wheel. Dr. Sletten explains Central Sensitization Syndrome (CSS) which is an umbrella over many diagnoses like small fiber neuropathy and others:

- https://www.youtube.com/watch?v=vJNhdnSK3WQ

Do you mind letting me know your thoughts on the video? What is your first personal goal? How can I help you further?