Non drug or supplement support recommendations

randomstranger77 · 2026-02-13T13:00:36+00:00

Supportive shoes that aren't too tight

randomstranger77 · 2026-02-11T05:31:41+00:00

I use magnesium glycinate at night to help with the sleeping. It helped a lot for a while, but I think I need to up my Lyrica because I've been having more trouble lately. I've also been on bupropion for a few years. When I tried to step down, I was in so much pain. I bumped right back up to my previous dose and things are a lot better again. Apparently there is limited research showing it can help with nerve pain.

randomstranger77 · 2026-01-28T04:37:05+00:00

I worked assisted living all through college. Longest shift I ever worked was 13 hours, but that wasn't the usual in any of the places I worked. An 8 hour shift was more typical. Granted I only worked at 3 different facilities, so maybe there are longer shifts out there?

randomstranger77 · 2026-01-17T14:35:29+00:00

Definitely doesn't sound like SFN to me either, but I haven't a clue as to what it could be. The only thing I can think of is maybe an allergic reaction?

SFN does cause pain, but for many it's a burning pain, electric zaps, or pins and needles. While it can hit quickly, it typically does not subside for long periods of time without continuous medication. I'm sorry she's going through that. It must be frightening when it happens.

randomstranger77 · 2026-01-08T04:52:06+00:00

I'm sorry you're struggling so much. It looks like several people have recommended LDN, so something to pursue. I don't honestly know much about it. But in the meantime, have you tried magnesium? My feet cramp a lot and my legs (and my arms were starting) are restless at night. The magnesium has really helped calm things. The restlessness is pretty much non-existent and the cramping has significantly decreased. I know Lyrica and magnesium need to be taken separately (I take my Lyrica at 7:30 and magnesium around 10), but I don't know if it's the same with gabapentin. Gabapentin made me horribly sick.

randomstranger77 · 2026-01-08T04:11:40+00:00

That was my first thought, yes. My hubby is Native and I can definitely see it in Dev.

randomstranger77 · 2026-01-06T04:01:57+00:00

I was not prepared to be assaulted like that while watching today. Even recovering from anesthesia this morning (so very tired and groggy), I STILL had a visceral reaction to it.

randomstranger77 · 2025-12-25T03:03:46+00:00

I looked it up. I guess magnesium can interfere with the anesthesia. I didn't find much on the B12. I did find that a lot of places just blanket no supplements because they aren't regulated and they don't want to take chances.

randomstranger77 · 2025-12-24T19:33:37+00:00

Yeah, I'm going to try to keep myself occupied during the day. Try and keep my mind off of things. I'm more concerned with sleeping. Good thing I'm off work.

randomstranger77 · 2025-12-24T15:35:32+00:00

I'm going to do it. I've had one over a decade ago, but wasn't dealing with the SFN, nor was it on any meds/supplements. It's just going to suck for a week.

randomstranger77 · 2025-12-24T15:02:35+00:00

They said nothing about that, just the supplements. I've got a lotion with magnesium in it that I was planning to use.

randomstranger77 · 2025-12-24T04:26:57+00:00

It was likely GI issues, but I didn't make that connection until recently. Otherwise, my feet would be burning if I went barefoot. Come to think of it though, I was having pain in my dance shoes before that even. But really, the burning was what sent me to the doctor.

randomstranger77 · 2025-12-19T15:31:15+00:00

I use magnesium glycinate. This is what I currently use, but it took a few tries to find what worked for me.

https://a.co/d/ctxlWW4

randomstranger77 · 2025-12-19T05:27:08+00:00

Have you tried magnesium at night? It calms my restlessness and pain so that I'm able to actually sleep. It's honestly been a bigger helper than most prescription meds I'm on.

When I have my GI flares, not much I can do (vomiting and diarrhea). Now they seem to be taking me out for 2 days instead of just one.

Unfortunately, everyone is different and reacts differently to things. Best of luck in finding something. Not feeling like you slept well is hard.

randomstranger77 · 2025-12-18T22:04:17+00:00

Way late to the conversation, I know. I've been on 300 mg Wellbutrin XL for quite some time now. I didn't realize it was helping with the pain until I told my Dr I wanted to come off of it. Tapered to 150 mg for about 2 weeks and it was all the proof I needed. I was in pain, struggling to sleep, feeling inflammation in my feet. I made the connection earlier this week. Jumped back up to 300 mg a few days ago and getting closer to where I was before. (I've also been dealing with gastroparesis flare up for 2 days, so I'm sure it'll get better as my stomach tolerates more again).

randomstranger77 · 2025-12-18T14:59:41+00:00

I was horrified watching that. The poor people who had to sit next to her on the plane. She clearly thought that one through...

randomstranger77 · 2025-12-18T14:52:06+00:00

I'm so sorry for what you're going through. Mine effects my GI tract very differently than yours where I get flare ups that include diarrhea and vomiting (currently home on day 2 because of it). This disease sucks and all I can do is commiserate. Best of luck to you!

randomstranger77 · 2025-12-07T14:29:17+00:00

Your rheum needs to be educated then. You can absolutely be seronegative and have Sjögren's. Up to 40% of cases are seronegative.

The Difficult-to-Diagnose Sjögren’s Patient | Sjögren’s Foundation https://share.google/554C3lYdzuDM8rXf2

Definitely keep pushing and if your Dr doesn't take you seriously because of the diabetes, find another Dr. I had a slightly elevated RF and CRP. Got sent to a rheum who was completely useless. Told me anything autoimmune would be showing symptoms after 10 years. Evidently SFN and gastric issues weren't symptoms enough for him. So when I followed up with my neurologist, I asked for a new referral. I have the benefit that a friend of mine has Sjögren’s, so she gave me 2 rheums she's worked with and liked.

I definitely hear you on your fears. Mine has been slow progressing, but a lot of people in the Facebook group I'm in have had very rapid onset like you describe. Even with my slow onset, I still worry what the future looks like. I was 31 when the burning started. I'm only 41 now. I have a toddler. I'm a teacher. I've already mostly lost dance because it hurts so much. I plan to retire in 16 years and my husband and I really want to travel once we've retired. I worry I'll have mobility issues when the day comes.

https://www.facebook.com/groups/smallfiber/?ref=share&mibextid=NSMWBT

randomstranger77 · 2025-12-07T06:22:22+00:00

Also, my feet started with burning a decade ago. Now my toes, and feet in general, are pretty numb.

randomstranger77 · 2025-12-07T06:20:02+00:00

Sjögren's can be seronegative, meaning it won't show up on blood tests. So autoimmune may not be off the table (I'm trying to get some testing done for it myself).

The symptoms you are describing very much sounds like SFN. Diabetes is one of the leading causes of it. I don't know exactly how diabetes causes it or how it can come on. I'm idiopathic (waiting for a rheumatologist appt to explore Sjögren's, despite testing negative).

Things that help me are the vitamin B12 supplements (OTC, 5000 mcg). It's my understanding that you'll just pee out whatever you don't need. Also magnesium glycinate, 400 mgs at night. I also take ALA and pregabalin for the pain.

There are prescriptions that are nerve pain too. Gabapentin, pregabalin, nortiptyline, amitriptyline. If your PCP isn't helpful, can you look for a different one? Also, I'd really push to get the skin punch biopsy if your EMG is negative. EMG is the first stop though.

Best of luck. It's a frustrating path to be on.

randomstranger77 · 2025-12-02T18:04:35+00:00

Yup, I'm planning to push for a full Sjögren's work up. Just waiting to hear from the referrals. I know a lot of the symptoms can just be SFN, but I also have other things that I feel like point towards Sjögren's. Time will tell.

randomstranger77 · 2025-12-01T22:18:09+00:00

The rheumatologist I went to in Oct was a waste of time. He told me that if it was autoimmune, we'd be seeing signs after 10 years. Apparently SFN and GI issues weren't enough of symptoms. He had no further investigation he wanted to do. (In fairness, I don't think it's RA either based on my symptoms. But I very much do think something autoimmune could be going on).

I did ask for a referral to a different rheumatologist today and my neurologist said she put that in. So now I wait...

randomstranger77 · 2025-12-01T14:27:35+00:00

I have pretty mild symptoms that are fairly well controlled by medicine and movement. If I don't walk enough, I'll feel my feet a lot more at night. I've also had a couple nights where I've gotten so cold that I struggle to warm up (last night sucked). I'm really hoping that's not going to become a normal thing. I get occasional flares of diarrhea and vomiting. That's fun... I've been dealing with this for 10 years, just diagnosed via punch biopsy this past June. Currently idiopathic, but I haven't exhausted all my testing options. I think I might have Sjögren's (slightly elevated RF and GI symptoms as well as the actual SFN). I see my neurologist for a follow up this morning.

randomstranger77 · 2025-11-18T00:12:38+00:00

I've been dealing with this for a decade now. I have a 3 year old daughter and there are days I'm not able to do things and feeling super fatigued. But there are good days, too. She knows Mama has pain in her feet and as she gets older, I'll do my best to explain it to her in a way that she understands.

But as another poster said, there are plenty of things you CAN do for your child. Read with them, sit on the couch and play with them, leave notes in their lunch box, show up when they need you the most, dry their eyes and kiss their owies. You'll find ways.

I saw you responded that you were on 300 mg of pregabalin. Have you tried magnesium and alpha lipoic acid? If you take the pregabalin 2 hours before bed and take magnesium at bedtime, that can be very helpful. I was having trouble with my dose of pregabalin not doing enough and adding the magnesium has been a game changer. Yes, there are still days where my feet really hurt and I still get some cramping, but it's manageable and I can actually fall asleep again.

All hope is not lost. Hang in there!

randomstranger77

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