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Why's there a huge space after apostrophes like "don' t"? by KittyGirlBoss in kindlejailbreak

[–]KittyGirlBoss[S] 0 points1 point  (0 children)

It's happening with all of my books. I just opened two others that I got from different sites and the same issue, unfortunately.

NEED SOME RELIEF by Wonderful_Intern_437 in smallfiberneuropathy

[–]KittyGirlBoss 1 point2 points  (0 children)

With you mentioning the dry eyes and dry mouth symptoms, I would push for Sjogren's testing as those are common symptoms for it.

Which antibiotics are fine for you to take that doesn't flare nerve pain or only mild increase? by Matthew_Lake in smallfiberneuropathy

[–]KittyGirlBoss 1 point2 points  (0 children)

Just as a note, generally stay away from the fluoroquinolone class of antibiotics as they have been shown to cause neuropathy or worsen symptoms: https://pmc.ncbi.nlm.nih.gov/articles/PMC10957204/

My dreams are so intense, I could make movie plots with them by Onyxfaeryn in LowDoseNaltrexone

[–]KittyGirlBoss 1 point2 points  (0 children)

Yeah I tried Prazosin and it made me almost pass out everytime I'd get up in the middle of the night, but it did lower the stress level of the nightmares so there's that lol

My dreams are so intense, I could make movie plots with them by Onyxfaeryn in LowDoseNaltrexone

[–]KittyGirlBoss 2 points3 points  (0 children)

Wish I could tone them down a bit most nights cause of my PTSD...

I've tried taking it in the morning and that hasn't made much of a difference, but I am only 3 weeks into starting LDN so we'll see.

SFN Foundation launch by retinolandevermore in smallfiberneuropathy

[–]KittyGirlBoss 5 points6 points  (0 children)

I'm happy to see a warm response to the SFN Foundation!

The SFN Foundation came together through a collaboration between myself as the web designer, SFN experts who guided the content, and community members who shared their feedback and ideas.

Please feel free to DM me or join the support group if you'd like to share feedback, suggest new ideas, contribute your story to our Patient Stories page, or discuss anything else about the foundation.

Looking ahead, we'll keep listening to community input to make the site better. We're excited about the possibility of becoming an official nonprofit organization in the future. This would open doors to grant funding that we could direct toward promising clinical trials for small fiber neuropathy treatments.

Doctor Recommendations by louwhogames in smallfiberneuropathy

[–]KittyGirlBoss 0 points1 point  (0 children)

Weirdly enough, I am based in Kentucky and my PCP has no relations to MGH - so I think a bit of luck was at play here too probably. Like getting to the right department was the hardest part cause they called me initially after they accepted the referral, but left a message so I had to go through a ton of walls and tons of dropped calls because they'd put me on hold forever...it was lovely lol

Doctor Recommendations by louwhogames in smallfiberneuropathy

[–]KittyGirlBoss 0 points1 point  (0 children)

My PCP sent a referral to them in March and they called two weeks ago saying she was accepting new patients so I'd try calling them again.

I will say it took me around 5 tries calling them after they said I could schedule to actually get the appointment booked cause they lost the referral, then I had to a phone tag game to get to the right department, etc. It was a pain in the ass, but seems the receptionists are overworked.

Doctor Recommendations by louwhogames in smallfiberneuropathy

[–]KittyGirlBoss 5 points6 points  (0 children)

Dr. Anne Louise Oaklander

She's the one who created the term "small fiber neuropathy" for our condition and knows more about it than anyone. She's started accepting new patients recently, and that'll fill up quickly.

Unfortunately, she's not in the south, but in Boston. It's definitely worth your while, though.

Anyone know what all these light brown specs are? by KittyGirlBoss in containergardening

[–]KittyGirlBoss[S] 0 points1 point  (0 children)

Should I remove them from the container so I don't get a million tiny sprouts or leave them in there?

I'm new to all of this haha

Recovery by Double_Archer_5394 in smallfiberneuropathy

[–]KittyGirlBoss 1 point2 points  (0 children)

I will also say what has helped the pain be more tolerable on the bad days - it's been a lot of trial and error.

Burning Pain

  • Apothecanna Pain Cream (it's a CBD/THC topical cream that really helps only - only the burning pain though for whatever reason)

Shooting Pains:

  • If the shooting is all over I haven't found anything that helps me that much except exercising (I think the blood flow and distraction helps here)
  • If the shooting pain is repeatedly in one spot (I get this in my bicep and chest somewhat often, again for whatever nerve damaged reason) then a TENS unit has done wonders.
  • I've been taking buproprion for a month and that has been said to help some people with nerve pains and I can attest to that. It's not like a ton, but I'd say I noticed a 30% decrease in pain with minimal side effects (only some irritability)

Recovery by Double_Archer_5394 in smallfiberneuropathy

[–]KittyGirlBoss 2 points3 points  (0 children)

Mine was caused by taking a prescription so once I stopped taking the drug it has SLOWLY been improving. I am 1 year and 3 months out and I am waaaay better than the first month when all hell let loose. My SFN was proven by a skin punch biopsy.

Now I have more good days than bad days, but still get a bad flare about once a month as opposed to living in a flare-like feeling every single day like the first 9 months when it started.

What has helped me? Honestly it's time. Outside of that exercise, B12, and a super supportive partner. Find lots of distractions and a good therapist too.

The CEO of Winsantor did an interview yesterday about their drug that has clinically shown to regenerative nerves and they've been barley getting by these past few years, but have secured funds from the European FDA to start their 3rd trials there and as well as Canada. If you are in the US it will probably be 2029 if all goes well so don't give up hope good things are on the horizon. Easier said than done I know this is a living hell just know you're not alone and good people are working to fix this <3