I'm about 4 1/2 years into a bout with idiopathic, full body, small fiber neuropathy. Like the original poster, I'm also experiencing a high-pitched whine. It seems to be worse in the evening like all my other neuropathy symptoms.
Hello. What kind of neuropathy symptoms do you have? Have you taken quinolones before they having this?
No, no antibiotics were involved.
I have both typical and atypical symptoms. The typical ones are tingling/vibrations/burning in my feet and legs, tingling in hands and head, and then these really bizarre "whooshing" feelings all over that come again. They're kind of like what you feel when you get an adrenaline rush. Sometimes they're in isolated parts of my body like they're hitting a nerve bundle, and sometimes they're just full body waves.
Tinnitus can be a sign of a vitamin B12 deficiency
Thanks, my B12 levels are good. When I was supplementing before I got into the neuro, lab results showed my levels were too high. The neuro told me stop the supplements, and my levels remain good.
Esto es exactamente como yo, Jane. Y acabo de hacerme pruebas completas del sistema vestibular, derivadas por mi otorrinolaringólogo que quería descartar una enfermedad autoinmune del oído debido a vértigo. Las pruebas (terribles) mostraron que no tengo daño en el oído que explique mi tinnitus o vértigo.
La audióloga se preguntó sobre la artritis en mi cuello, pero para ser honesta, como mi neuropatía de fibras pequeñas (SFN) afecta cada parte de mí y tú tienes pretty much la misma combinación, voto por SFN como culpable.
Debería añadir que se ha descartado la artritis de mi mandíbula y se ha añadido la ataxia sensorial a mi lista. Fracaso en la prueba de Romberg cada vez. Por lo tanto, la audióloga sintió que mi vértigo, el desequilibrio y el tinnitus pertenecen todos al lado neurológico de mi síndrome de Sjӧgren en lugar de daño vestibular.
Hola. Acabo de responder con esta actualización a Jane, así que esto es lo que dije: Me acabo de hacer pruebas vestibulares completas, derivadas por mi otorrinolaringólogo, quien quería descartar una enfermedad autoinmune del oído debido a los vértigos. Las pruebas (terribles) mostraron que no tengo daño en el oído que explique mi tinnitus o vértigo.
La audióloga se preguntó por la artritis en mi cuello, pero para ser honesta, como mi neuropatía de fibras pequeñas (SFN) afecta a todas las partes de mí y tú tienes más o menos la misma combinación, voto por SFN como culpable.
Debería añadir que se ha descartado la artritis de mi mandíbula desde que escribí esto y se ha añadido la ataxia sensorial a mi lista. Fallo en la prueba de Romberg cada vez. Por lo tanto, la audióloga consideró que mi vértigo, desequilibrio y tinnitus pertenecen al lado neurológico de mi síndrome de Sjӧgren en lugar de a cualquier daño vestibular.
Wow. You sound like what ive went through the last 2 years.
Shame this was a few years ago, and doesnt look like you are active any more.
I’m still around and still dealing with it all. It’s definitely an inflammatory condition as I now have inflammatory nodules in my lungs. I’m affected by salt terribly as well, and can keep my symptoms to a minimum by watching salt intake.No clue why.
Nice to hear from you and hope all is well.
How did you find out about inflammatory nodules in lungs?
The only thing ive had flagged up is slightly elevated IgA, low positive ANA and a history of extremely low serum folate levels.
Ive had MRI scans related to nervous system, but nothing has came up.
Just like you, dealing with them everyday.
Hi,
The inflammatory nodules were an incidental discovery when I had a routine Cardiac Calcium Scoring test done in 2018. They recommended a CT to investigate further. The radiologist who did the CT report said they looked inflammatory at the time, so that put it to rest at the time. Fast-forward to 2020, and another follow-up CT scan was done. This time, the radiologist was concerned about possible multifocal adenocarcioma. My dad died of lung cancer at 42, so that started the phone ringing. To keep a long story as short as possible, I’ve since had a PET scan, lung biopsy, and three or four follow-up CT scans. They’re back to inflammatory again.
I’m not happy things are growing in my lungs, but they’re not causing any issues.
At this point, I think my body is producing histamine in response to something. Histamine is a neurotransmitter and can cause a raft of symptoms depending on which histamine receptors are getting hit. H3 receptors hit your central nervous system, and unfortunately, there is no H3 antihistamine.
The only MRI that showed anything out of the ordinary was my brain MRI. It showed two areas of hyperintensity of "uncertain clinical significance."I read one research report that said that’s exactly what excess histamine in the brain looks like.
I also have developed kidney stones for the first time in my life, so I’ve had to alter my diet and go low oxalate and low sodiumMy neuro symptoms are better than they have been in years, and I can only cite the dietary change as the reason why. They’re not gone, just not as bad.
Really don’t know what make of all of it, and I’m like most everyone here, I’m on my own to figure it out.
With regards to your mention of salt (sodium and potassium), there seems to be some link between that and excitability of neurons in the body. If you check up on HCN channels (particularly HCN2) and tinnitus, there is some ongoing research to say that disregulation of these channels can cause neuropathic pain and tinnitus.
The disregulation is potentially caused by neuroplasticity, if you’ve heard the term. Basically our brains change and adapt based on whatever our experiences are throughout a period of time. I am thinking with what is mentioned in the information i’ve read, for myself and potentially you as well, there is some form of hyperactivity of the neurons which is causing nerves to fire continuously. .
As I was going through quite a stressful period in my life, with job interviews, having a young family, hobbies, etc, my theory for me is that period of stress induced these changes, as my nervous system was in overdrive. When I initially had my symptoms, I had those typically assumed with anxiety, however when the pain started, it came for 3 months, then went away for 3 months, and came back. Now have varying days of it, but its more of a nuisance than anything. My pain levels probably go up to a 4 or 5 max, and are most of the time at a 2 or 3. But to have sharp stabbing pain and ringing tinnitus almost 24 hours a day is not great for anyone.
I might try a low salt diet and see how I get on.
I was wondering if all this developed for you, whenever you had a stressful period of your life, or have/had anxiety?
Fascinating!!! Yes, I have heard of neuroplasticity and just recently started looking into it as a mechanism for pain control.
Stress? YES.The year that this all started involved a lot of stress. There was both a lot of work-related stress and also physical stress caused by a cascade of unfortunate events that started with a double-red blood donation. I won’t go into all the gory details, but it involved my ferritin levels dropping into the single digits while I contained to be physically very active. I ended up taking iron supplements which tore up my digestive tract, caused immediate weird symptoms in my head, and that was the beginning of the nightmare.
Generally speaking, anxiety has not been a big problem for me…until I get under stress. My brain goes into overdrive when I’m under stress. Thankfully my life isn’t terribly stressful, but that prolonged stress back in 2013 was highly unpleasant. And now, as soon as cortisol or adrenalin hits my nervous system, it’s like a fire has been lit in me. Your theory fits my story.
Thanks for the prompt to revisit the neuroplasticity angle of things. I actually purchased this book on Audible a while back and never listened to it. I heard the author on a podcast.
The Way Out | A Revolutionary, Scientifically Proven Approach to Healing Chronic Pain by Alan Gordon
Had a terrible week 
I’ve started to notice i get red blotches or patches on my skin. Its not painful or itchy. It seems to be flushing of the skin which happens for a hour or so and then disappears. Actually had it for a while, but saw it come on more in the last few months.
Also been having pain in my legs, in addition to the pain in my arms, which is really bringing me down. Also been having crazy muscle twitching, I get more what feels like micro twitches everywhere, and a few larger twitches. I’ve had more blood work done and awaiting results.
I am actually thinking this could be something like small fibre neuropathy.
How did you all get diagnosed with small fibre neuropathy?
Sorry to hear about your terrible week. 
The twitching is something I also deal with, although it’s not twitching you can see. I can just feel it, and “micro twitches” is a good description of it.
My neurologist diagnosed with me idiopathic SFN after all blood work, MRIs and even a spinal tap came back normal. He never did a punch biopsy, though, which is absolutely confirmation. The reason he didn’t do it was that he said he knew I had SFN, and a punch biopsy wouldn’t tell us why.
Hi Jane,
Thanks for the response again.
Yeah been a rough week, even mentally.
That seems a bit useless with the idiopathic tag. Surely they could have looked more into a reason. I read that 50% of SFN diagnosis is idiopathic, but the other 50% is made from other more obvious causes like diabetes. I certainly wont have that as I am have a normal BMI, and i assume you’ve explored this cause also.
I have an assumption that it could be autoimmune. My father has rhuemetoid arthritis and my mother has fibromyalgia, even though fibromyalgia is not considered autoimmune, there has been recent research suggesting such. This may just increase my risk of an autoimmune disorder developing.
May I ask if you had any autoimmune markers in your blood work, like positive ANA (if so what titre) or any other autoimmune anitbodies?
I flagged on a 1:80 speckled titre in 2020, but they say that gives a low chance of an autoimmune disorder. I’ll be keeping an eye on my recent bloods which will come in next week.
I had a full blood work-up by a rheumatologist…nothing. ANA results were completely normal.
I believe what is wrong with me is in the functional realm, and not something mainstream medicine will pick up on.