Fibro and paresthesia

[csh222]

@Looby69 This explains it perfectly! Though I do not deal with the twitching or tremor, and am sorry to hear that you are experiencing that. I have described my sensations as bugs crawling before but am wary of doing so because that sounds so weird to anyone who doesn’t get it! Thank you for your feedback!

 

[Lifespeaker]

I have been dealing with a severe case for 3 months. On top on the sharp needle pain which makes me jumpier it feels like my skin is being seared. Mt intestines also hurt. Lurica has helprd a bit but a higher dose is needed.

 

[sunkacola]

I occasionally have this sensation, always in my legs. Often it is accompanied by twitching and a constant sensation of needing to move my legs into a different place or position. It definitely feels like tiny insects crawling all over my legs. The only thing that has helped with this for me is use of a TENS machine.

 

[Auriel]

Welcome to the forum @Lifespeaker ! boy does that sound familiar! is a horrible pain, people who see us/know us aren’t even aware! if your like me you’ve probably learned to hide it really well, I also need a higher dose of my pain meds (had them put up 5 months ago) but I feel I need more too now 🏕

 

[fimi]

I occasionally have this sensation, always in my legs. Often it is accompanied by twitching and a constant sensation of needing to move my legs into a different place or position. It definitely feels like tiny insects crawling all over my legs. The only thing that has helped with this for me is use of a TENS machine.

Yes, I get that in my legs too, and it seems worse at night. The prickliness in other parts of my body seems to come and go. The leg feeling is very annoying when attempting to sleep.

 

[Star22]

Neuro said these are symptoms of my Fibromyalgia and that I had to learn to manage them.

Hi, Looby69

I find it interesting that your neurologist told you that those skin symptoms are coming from fibromyalgia. My neurologist diagnosed me with Small fiber polyneuropathy (SFPN) a few years ago. It usually starts in the feet and works its way up and it can also affect the hands, too. I told him I had been diagnosed with fibromyalgia back in 2011 but he just looked at me and didn’t reply. It was kind of funny because I was actually consulting him for a sleep study and he began asking me questions and checking my responses and nerves… I did mention that I thought I had stepped on a cellphone set to vibrate in 2017 because I could feel an electric zap / sort of buzzing feeling underneath my left foot. But there was nothing there and on the outside, there was no sign of this strange electrical vibration that was occurring inside my foot. At that time, I had seen my PCP who tested my B12 - we thought that was the problem but the buzzing came back even when my B12 was okay.

Over the years, the buzzing has come and gone (but never goes away) and now I’m getting sharper zaps or stabbing pains and feel everything too much or like something is crawling all over me, too.

My neurologist also diagnosed me with restless leg syndrome and bilateral carpal tunnel syndrome which I thought was responsible for the pain in my fingers and hands, or it could be the SFNP … but I am developing Dupuytren’s contracture and plan to see a hand specialist soon.

I found an article that mentioned Small fiber polyneuropathy (SFPN) may somehow be connected to fibromyalgia and I am wondering if Fibro is connected to my other conditions in someway, too.

Looby69, I wish my neurologist had been more like yours: vocal about my fibromyalgia being legit rather than acting like I hadn’t mentioned it.

Thanks for sharing.

Star22

 

[Looby69]

@Star22
I too have the buzzing, vibrating, pulsating feelings, like there is a current running through my legs. Everything you mention I suffer with too although never had a SFNP diagnosis.
My B12 was slightly under range but is now normal and I still have the buzzing, probably not quite as severe.
I don't know how I felt to be honest when he said it was my fibro. I have so many strange and whacky symptoms, I often wonder if there is an actual name for it. It felt like my Neuro just wanted to label my symptoms

 

[sunkacola]

Sometimes people - both doctors and patients - will assume that whatever is going on is fibromyalgia once you have been diagnosed with that. But that doesn't mean everything a person experiences actually is part of the fibro. You don't want to assume it is, and miss out on possibly diagnosing something that is a) dangerous or b) can be treated effectively. Simultaneously you don't want to be running to the doctor for every individual symptom. It is a fine line at times, tricky to navigate. Basically, my way is that if something brand new appears that I have not had before, I assume it may not be connected with fibro so I will check in with my doctor. If it seems to be a variation on something I have been experiencing, or the resurfacing of something I have experienced in the past, I will wait to see what it does before deciding if it is doctor-worthy or not.

I find that the more in touch I have become with my body, the better at checking in with my body many times a day and being closely aware of what I am feeling, the better I am at figuring out whether it is worthy of a trip to the doctor or not.

 

[JayCS]

I told him I had been diagnosed with fibromyalgia back in 2011 but he just looked at me and didn’t reply.

I found an article that mentioned Small fiber polyneuropathy (SFPN) may somehow be connected to fibromyalgia and I am wondering if Fibro is connected to my other conditions in someway, too.

Some proponents of SF(P)N claim that 40% of fibromites have it and/or that it is a cause of it or it is the cause and explanation (disregarding the other 60% or just dividing it up). Most others consider this an outsider opinion without basis. This is similar to people touting a thyroid explanation of fibro. Etc. These were all ideas, but lacking enough basis are not being followed up (yet).
That however might mean that your doctor was unsure what to say.

If it helps you find something that helps you, then it's good. If it doesn't, "put it in a box" for a later....

 

[Auriel]

what tests are there for small fibre neuropathy? (it must be hard to test for they must be tiny?) also last night I had pineapple chunks before bed (wound up my leg pain something chronic!) I always thought pineapple was good for you (and anti inflammatory?) new 1 on me never had that before? ?

 

[fimi]

It may have been all the sugar in those pineapple chunks you munched on before bed that wound up your leg pain @Auriel!
Naughty Auriel!

 

[Auriel]

Hello fimi! Yeah I did wonder if it was the sugar (they were in a tin though so it coulda been that) ordinary pineapple never bothered me see, naughty me and my pineappley night

 

[JayCS]

what tests are there for small fibre neuropathy? (it must be hard to test for they must be tiny?)

Dead right there! - There are a few tests, but I think the main one is a skin biopsy where they measure the density.
Interesting reading the pain symptoms, cos despite it being "peripheral" you can also have an overall pain. Hmmm... :

 

[Auriel]

indeed? I’m gonna look more into this this is an interesting subject, ok bye bye for now I’m gonna bed soon (early night pain meds got me tipsy and drowsy) night night everyone night night jaycs (+ thanks for the info)

 

[sunkacola]

also last night I had pineapple chunks before bed (wound up my leg pain something chronic!) I always thought pineapple was good for you (and anti inflammatory?) new 1 on me never had that before? ?

Auriel.........
always remember that correlation (things happening at the same time or one after the other) is not the same thing as causation (one thing causing another to happen).

You have no way to know whether or not your leg pain would have been worse that night without the pineapple or not, so I offer a suggestion that you not assume that one caused the other. The only way to know for sure if there is actually a causal relationship would be to experiment with it over time. Of course, I wouldn't blame you if you just decided not to eat pineapple ( or not to eat it in the evening) instead. But I would caution you against making that assumption, and especially against telling other people that the pineapple caused leg pain, as you don't want to be the bearer of faulty information.

I have always experimented when I thought something caused a reaction in my body, even if the reaction was highly unpleasant, because I am a person who really wants to know these things. More often than not it turned out there was no connection at all. Of course, when you can experiment enough to determine for sure that there actually is a connection then you have found good information for taking care of yourself.