Strange Sensation..??

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qsj748

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DX FIBRO
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Sorry to bother all you lovely people. I was wondering if anyone can stop me from feeling like I’m losing my mind? 🤞 So for possibly a few years or maybe longer I get this strange noise & sensation up & down the back of my neck. It happens nowhere else in my body however I have a bunch of other sensations that do 🤦🏻‍♀️ Went off topic there, my apologies 🙏🏼 The only way I can describe this noise & sensation is to say it sounds & feels like crackling electric 🤔 I do have mental health problems & I forever put it down to my medications but I’ve been psychiatric medication free for over 6 months. I used to only get this sensation now & again but the last few months I experience it at least once a day. When I try to explain to anyone they just laugh me off & tell me I’m imagining it 😔 Please if any of you understand or have encountered this could you please let me know. Many thanks for reading & many more thanks for any response 💛
 
Hi @qsj748, although I get neck pain, I can't say I get the crackling. However, I do get weird sounds in my ears!
 
When I try to explain to anyone they just laugh me off & tell me I’m imagining it 😔
When I tell today's doctors about doctors in the past that have laughed about symptoms of mine, they are humble and apologetic. There are "letter's to the editor" from researchers telling doctors to start listening more to their patients' perceptions as doctor's diagnoses are often proven as wrong. May that humbleness catch on in the medical field.
strange noise & sensation up & down the back of my neck... .crackling electric
This sounds like nerves, especially the CNS = central nervous system / spine and would fit to the CSS = central sensitisation explanation of fibro. It would also fit to other conditions / co-morbidities / fibro-explanations like SF(P)N = Small Fibro (Poly-)Neuropathy or FND = Functional Neurological Disorder.

If good neurologists weren't amongst those you've asked - at least two - I'd definitely do so.

If they can't help and orthopedists can't find anything in any scans I'd ask good physiotherapists if they can feel anything.

To be able to get doctors on the right track it's important to explain it as well as we can. In this case: Do only you hear it or does someone else hear it? How can you manage to tell the crackling is coming from your neck - is it only because the sensation is there, or would you be able to localize it even if you didn't have the sensation? Do you ever have the sensation without the crackling or vice versa? Can you identify triggers? - When does it happen, how often, how long for, how loud and how severe is it? 🧐
 
I am sure you have explained brilliantly something I’ve have for years sometimes just lying in bed especially on back its like a fuzzy electric sound feels on me coming from the base of my skull where neck and skull join! There MAY be a little sensation but not always, it’s not painful and so far never has seemed to cause me harm either. But I‘m litterally 100% sure qsj748 explaining what I also get here too! Mind I had this for years way way before Fibromyalgia well certainly years way before hearing of fibromyalgi??? If you find out what it is please let me know and vice versa!
 
fuzzy electric sound
Interesting, the plot thickens! Ah, that reminds me, I was gonna ask: electric sounds are normally clear and high frequencies, whilst the sounds we hear in our bodies are usually muffled, dull, low frequency (heart beat in ears, our voice lower when it comes thru our body). How would it relate to that or to the high clear sound of tinnitus (had that in days long gone by for 24h after loud concerts without ear protection...)
 
Its extremely difficult to explain it but it starts fuzzy then clear it’s clearly how you would describe an electric sound, duration is just seconds maybe 2- 4 seconds in total. Unsure if it’s moving head which causes it in certain position. It happens regular to me but definitely not on daily basis maybe monthly or so mind I’m that used to it i kind of don’t think much of it. It’s not alarming or anything and may be slight sensation but not pain causing???
 
I get something, what I can only describe as like a Pop Rock (the candy) or carbonation sensation at the base of my skull. I have asked the DR about it and they will literally shrug. All the specialist I went to and not one had any idea what I am talking about.
 
A strange form of paresthesia?
 
bit late to the party, but im wondering if maybe it's just your spinal fluid moving? is it ever accompanied by a sensation like something trickling down your neck?
im able to feel and hear my spinal fluid moving sometimes. ive always described it like sand moving down an hourglass or falling between my fingers, though static would also be an appropriate way to describe the sound. i can often feel it moving like a trickle inside my neck, or occasionslly lower down my spine. several Dr's over the years have assured me it doesn't mean anything as long as there's no other symptoms that go along with it. so if this sounds accurate to your experience too, you may not have anything to worry about :)
hoping you find the answers you're looking for soon!
 
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