Fibro and paresthesia

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csh222

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Hi! I’m just wondering if anyone else experiences this. I have the strangest and most frustrating skin sensations. It can be random painful shocks all over my body, a general prickling feeling, or a crawling feeling that makes me itch. These are all incredibly distracting and upsetting. If it is going on at night it makes it hard to sleep. If it’s happening when I’m around other people it can cause me to jump or become a little spazzy and can be embarrassing. As a whole it makes me feel really crazy. Does anyone else deal with this? If so, have you found anything that helps?
 

JayCS

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Hi too :) - Similar here, but skin "shocks" not often. I've never been sure of what it exactly is, thought it might have to do with my generally dry, oversensitive skin, but it's got worse, a sensation I'd call mainly "burning", since my jab-triggered MCAS. That puts it together with my allergic/histaminey reactions, which means I can get it down by using supps, reducing histamine, upping serotonin (using GABA) and to alleviate it, e.g. at night, I am able to use a good cooling body lotion. The dry skin means avoiding triggers like synthetics, water, soap etc. (= only organic cotton; very short showers).
In your case it might be more the nerves, so supps like a good magnesium, vit. B12, praps D3 etc. might help, as well as trigger "hunting", praps also physical distraction like a TENS or stroking (praps somewhere near).
I'd try to stop it getting me embarrassed: e.g. How else are people supposed to realize we have an invisible but severe illness? 🤠
Incredible skin itching in my twens turned out not only to be due to the dry skin, but also back and stress. Looking back praps also MCAS.
 
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Auriel

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Hi @csh222 welcome ☕🍪 yeah I get the same strange pins and needles feeling like your being stung or plugged into some kind of electric shock machine (it’s very horrible, my legs suffer the most) I have to avoid sugar, Coca Cola, gluten/wheat, (stress is a huge culprit ) I’ve had it so long now the only thing that helps me is my gabapentin (at least when that starts to work I can “try” for exercise) then exercise helps a bit, one time I tried keto and intermittent fasting (that seemed to help) always check with your dr first if your gonna try changes, it’s a horrible rainy day out but it makes me happy to have new members to welcome to our lovely little community 🐨🐼🐻
 
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Auriel

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What are you embarrassed for @JayCS? I also found the name paresthesia a few weeks ago too, it seems to fit in with what we get and neuropathy, these are the only two words I’ve found so far (still not found one for the weird moving sensation yet)
🎶🙉🎶
 

csh222

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Thank you for your response! I haven’t tried any prescription meds for my symptoms yet. I just got diagnosed about 7 months ago, so I’m trying lifestyle changes first. I actually take all three of the supplements you mentioned, so I guess that’s a good sign! :) I am working on the embarrassment aspect, it’s hard when I’m such an anxious person. Finding others who can relate is helpful, I’m grateful to have found this forum.
 

csh222

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@Auriel Thank you! I have noticed that sugar causes inflammation for me and I definitely do better when I limit it. I haven’t tried cutting out gluten yet, but I know it would be a good idea to see if that makes a difference. Stress likely is the number one issue for me, I struggle with very severe anxiety and panic attacks. Weather fluctuations, especially cold, also make a difference. I know it’s all trial and error. It’s frustrating to never know how I will feel day to day or moment to moment. I think @JayCS was just responding to me about the embarrassment aspect. I feel very alone and misunderstood oftentimes. Holding on to hope though!
 

fimi

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Hi @csh222, Yeah, I get the prickliness on my skin too. It seems to come on all of a sudden and it's quite annoying!! I tend to stay away from soaps and fragrances etc, and do what I can to protect my skin but it still happens. So now I have just accepted it as another symptom of fibro...I shall add that to my list...!! :rolleyes::)
 

Looby69

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Hi @csh222
Yes I have the paraesthesia. I remember the very first time it started (last year) I was sat watching TV and I said to my husband, it feels like I've got money spiders crawling all over me. It can often feel like hair follicles growing or just a prickling sensation. I get it in my scalp too. I often get, what I can only describe as like an electric needle sensation, which then makes me jerk. I also have a lot of muscle twitching too.
I was quite concerned at these symptoms and with the support of a Neurologist had an EMG. Luckily it all came back clear.
The Neuro said these are symptoms of my Fibromyalgia and that I had to learn to manage them.
Yes, I appreciate the neurologists advice but when you're in pain, tired, twitching, prickling skin, dry mouth, cracking joints it can be rather challenging to manage.
For me, what I find so overwhelming with Fibromyalgia, is the vastness of it and the many many symptoms of which you can experience at the same time.
I can cope with most symptoms in isolation, but during a flare when they're coming thick and fast and unrelenting, that's when I start to get a little freaked out!
 

Auriel

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You got us now so you won’t have to feel alone now, yes I had to be put on gabapentin the pain was very bad and the other meds were having some weird and some scary side effects, but I went a while without care because the dr i first saw put it all down to being my imagination so I didn’t see anyone for a while till I brought it up years later with a different one 🌼🤗🌼
 

Auriel

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Some of the symptoms can be really scary can’t they @Looby69?, like I worry about strokes and early Parkinson’s sometimes, it can be scary can’t it? 💗🌸💗
 

Looby69

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Some of the symptoms can be really scary can’t they @Looby69?, like I worry about strokes and early Parkinson’s sometimes, it can be scary can’t it? 💗🌸💗
Absolutely @Auriel
It can feel very isolating too. Trying to explain to your loved ones, some of the symptoms you're experiencing. Like I said in my previous response too, when these symptoms are coming thick and fast with no let up, it is overwhelming and I can't help but feel worried that there is something more sinister going on.
Which then exacerbates some of the symptoms because my health anxiety goes into overdrive. It's a vicious circle.
I too have worried about Parkinsons which was another thing the Neuro has ruled out. Just typing this message now though, my thumb is starting to tremor 🤦‍♀️
 

JayCS

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What are you embarrassed for @JayCS?
Hehe - Not embarrassed at all, after decades of successfully self-applied social phobia training... :)
As @csh222 has seen, I was suggesting to try training not to be embarrassed....
When something hurts and I wanna say ouch or jump up, I do, and am not apologetic in any way. At the moment it's using loud swear-words when trying to cold shower for a few seconds, as even a minute warm now hurts. 🤬

Embarrassed I am only on other thread(s) - that I'd been making fuss about our online fibromyalgia test, not realizing how relevant it actually is...
 

JayCS

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I can cope with most symptoms in isolation, but during a flare when they're coming thick and fast and unrelenting, that's when I start to get a little freaked out!
Yeah, I can relate (like to everyone else everyone's saying)....
At the moment my MCAS flare (or something I'm doing about it 🧐) is setting local pains going off again.
If they come thick and fast and unrelenting, instead of it getting me down, my self-care comes thick and fast and unrelenting.

Trigger happy with my massage 'gun' 🔫 they don't last because I shoot 'em down immediately. I get it inside of minutes or even seconds, use it for usually about 20 seconds, and then it stops hurting, sometimes repeat a few minutes later. I swear they start to tr-tr-tremble when they see me get it. 😱 The other day 6 areas, yesterday 3. When they're coming fast, it's always next to me, loaded. (And of course the according stretches. But I'm even massaging the plantar fasciitis/calves). But never long in one place. The only(?) one I had to repeat was lower back coming back slightly differently after standing longer than usual at my music/work-desk.
 

Auriel

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Tell those tremors to go away @Looby69! Tell them to go towards a jelly or a panna cotta instead! (naughty scary tremors) 🙊🙈🙉
 
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