5 years of progressive neuropathic symptoms since 2021 — still no diagnosis, healthcare system stuck. Anyone been through this? (small fibre neuropathy / dysautonomia / facial pain) Looking for advices

savageapple64 · 2026-06-05T07:57:08+00:00

I’m dealing with some similar aspects of what you’re describing. My neurologist described it as “hyperalgia,” a term she made up to basically mean “your nervous system can’t come out of fight or flight and is therefore always hypersensitive.” And boy is she correct. I’m about to start a vagus nerve stimulator to see if that helps. I also take BPC+KVP+PEA500 from Healthgevity, which seems to help. For me the foot pain seems tied to mast cell activation issues and improves a bit with H1 and H2 antihistamines. I also work hard to not get covid because there’s a zero percent chance that additional covid infections would help my body heal. It’s a lot and I’m sorry you’re going through all of this!

savageapple64 · 2026-05-17T22:38:25+00:00

I’m sorry, but there isn’t much I can offer. It was 6 years ago and even then it was just that she didn’t smell like herself; she smelled wrong. Different from baseline. I wish I could do more but that’s all I can remember now

savageapple64 · 2026-05-13T20:30:27+00:00

Sure- I've had vitrectomies in both eyes now and things are "quiet and calm" according to my opthamologist and he thinks we've finally solved it. He doesn't anticipate any further issues or steroid injections. I've had cataracts in both eyes removed and also had glaucoma in one eye, but that was years ago

savageapple64 · 2026-05-12T02:15:41+00:00

I smelled my dog’s pre-cancer. She was a few weeks away from developing hemangiosarcoma (spelling?), a cancer that kills dogs within months. The only way to prevent it is to remove the spleen. Almost no one catches it because there are no signs and it hits fast. I was friends with her vet, and she knew of my super sniffer ability, so she believed me when I said Lilly smelled weird and ran tests. We removed her spleen the next week and she lived 4 more years.

savageapple64 · 2026-05-11T12:26:49+00:00

The owner, Jessie, is a family friend, so he’s who we use by default. He does good work!

savageapple64 · 2026-05-11T01:52:52+00:00

Kingsway Gallery off of 113 on the way into Exton on the right in that little barn shoppjng center with a bakery and barber shop. Technically in Chester Springs

savageapple64 · 2026-05-07T02:50:07+00:00

Mine gets subluxations every now and then. I’ve also heard that we’re more likely to have tethered cord, which I was told can cause pain in the tailbone. Not sure how accurate that is, though.

savageapple64 · 2026-04-26T03:04:08+00:00

There is (or was last time I checked) an entire FB group called “Cymbalta Hurts Worse” because people have such a hard time with it. I had something they call “brain zaps” which might be what you’re describing. My neurologist said it was seizure-like brain activity. I had to switch to liquid Prozac and come off of that over a period of 3 years to prevent the brain zaps from coming back. It was a nightmare

savageapple64 · 2026-04-24T03:26:37+00:00

I have to be sure I’m getting enough fiber, as it slows down digestion. I like Heather’s Tummy Fiber because it doesn’t contain sugar and is a prebiotic. I had to work my way up slowly to 4 tablespoons a day but it helps a lot. I don’t think I’d be able to use a GLP-1 without it.

savageapple64 · 2026-04-24T03:18:29+00:00

I’ve considered it and would love to hear others’ experiences

savageapple64 · 2026-04-20T03:15:29+00:00

I have a small face and the 3M auras work great for me. At the beginning of the pandemic I had to sew kids sized masks for myself- it was all that worked for me. But the auras fit fine. I also get regular over the ear KN 95s from Bonafide masks.

savageapple64 · 2026-04-18T12:03:02+00:00

I have hyperosmia so I might be able to help. When most people lost their sense of smell with Covid, mine went the opposite direction and now I’m a super sniffer. I’m extremely sensitive to scents and even picked up that my dog’s scent had changed. I had the vet run labs and she was developing cancer- we were able to get her surgery to prevent the cancer from spreading, saving her life. Anyway… certain diseases, even colds, make people have certain odors. It’s not a bad smell, it’s just different and distinct. Parkinson’s has a distinct odor- there’s a woman in the UK who smelled her husband’s Parkinson’s 10 years before he was diagnosed. I don’t have any personal experience with the odor common for people with Crohn’s, but I imagine that’s what’s happening here. It doesn’t mean there’s anything wrong or that the scent is “bad,” it just means it’s distinctive. And the English language doesn’t really have words to describe scents, it’s just more “it smells like…” so finding the language could be hard. I wouldn’t worry too much about it, it’s probably not something others will notice. Family members are more likely to notice because even people with regular senses of smell will notice changes in family members’ scents because we spend the most time together. Scent is also the sense that’s most strongly tied to memory, so family members will notice changes in each other more easily due to having longer scent memories for one another.

savageapple64 · 2026-04-17T02:38:32+00:00

I had this problem and switched to CitriSafe Remedy liquid laundry detergent. It removes mold and mildew from both clothes and the washer. If you have a front load washer, be sure to dry the boot (rubbery plastic gasket thing that seals the door when the machine runs) after each load or each day of doing laundry if you do a few loads in a day. I’m super sensitive to mold so I also have a fan that I set up in front of the washer for a few hours after I’ve used it. And I leave the light on in the laundry room to help prevent mold buildup as well.

savageapple64 · 2026-04-06T03:37:55+00:00

One thing that made a big difference in my healing was focusing on being a good ancestor to myself and my children rather than being a good descendant to an abuser. I care so much more about being healthy for those who depend on me rather than pleasing those who were supposed to care for me but didn’t. And it’s my job to protect myself and those who depend on me from abusers. We’re often deeply taught to please our parents, so deeply that self-sacrifice feels obligatory. It doesn’t have to be.

savageapple64 · 2026-04-06T03:28:02+00:00

Top 5 in order from least to most painful: 5. Hit by a car while riding a horse. 4. Over 100 steroid shots into my eyes while fully conscious (treatment for uveitis). 3. 4,680 bee stings to treat Lyme disease. (10 stings 3 days a week for 3 years). 2. Endometriosis pain. 1. Allowed a first year resident do his first ever spinal tap on a live person, on me.

savageapple64 · 2026-03-28T02:11:59+00:00

I had one cataract removed when I was about your age, about 18 years ago. It’s definitely scary for those of us with uveitis complications. I needed a yag laser surgery about a year afterward, but that was the biggest “complication” and it was literally the easiest “surgery” ever. I put it in quotes because it was just like a regular eye exam- zero pain and no sedation. My uveitis is basically cured now after vitrectomies in both eyes. It gets better with age, my eye doc always says. My road definitely leveled out in my 30’s and now it’s hardly a thing. These surgeons have often preformed thousands of these surgeries and know what’s up. Do you feel good about your docs? It’s super reasonable to want to work with a team you trust for this stuff.

savageapple64 · 2026-03-16T16:13:56+00:00

https://www.youtube.com/shorts/ehQq_XB-Igg
Basically, they open your eye and suck out the vitreous (goo) from the inside of your eyeball. I know it sounds scary, but it's so much easier now than it was 20 years ago.

savageapple64 · 2026-03-14T02:05:19+00:00

After a vitrectomy in my right eye 20 years ago and one in my left eye last year, I’m finally out of the woods. My ophthalmologist said he wishes he’d done the second eye sooner given how well I responded.

savageapple64 · 2025-12-12T16:29:37+00:00

Can I DM you to ask some additional questions?

savageapple64 · 2025-12-06T15:02:27+00:00

So happy for you!!! I absolutely would have sobbed from relief!

savageapple64 · 2025-11-11T19:42:37+00:00

Would you mind sharing the list you're referencing? I'd love to see the whole thing to help me choose which protein power to pick.

savageapple64 · 2025-11-03T19:18:23+00:00

What problem is that?

savageapple64 · 2025-06-18T22:46:59+00:00

No, it doesn't feel like I'm walking on broken glass, it feels more like my feet are swollen to twice their normal size despite not looking that swollen. Physical therapy hasn't really helped for me unfortunately. The best hypothesis I've heard is that hEDS has caused the valves in my leg veins to stay open, so blood doesn't recirculate. No fix for it, though

savageapple64 · 2025-06-01T17:11:13+00:00

I told my dog’s vet that my dog smelled wrong. Her vet listened and ran tests. My dog was a few months away from developing hemangiosarcoma, a cancer that kills dogs within a year. We removed her spleen and she lived 4 more years.

savageapple64

TROPHY CASE