Restless arms?!

Charxx

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Hello all, this is my first time posting on this forum.
I've been diagnosed with fibromyalgia since 2019 which my consultant thinks was triggered by childbirth.
I'm fortunate in that my symptoms aren't debilitating, I can cope ok (most of the time). For the past few months or so i keep getting what feels like restless leg syndrome but in my arms! It's so weird but it's freaking me about a bit now. This also extends into my hands and when I yawn my finger twitches/lifts itself up. Does anyone else have this? I hate going online because it creates the fear that there's something more serious and I suffer with awful health anxiety as it is :( . Look forward to your replies.
 

JayCS

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Hi Charxx - and welcome! -
Well you've already revealed your more (most?) serious symptom,
which might be best to work on before and aside from everything else:
You've tried doing something about this health anxiety of yours?! 😏
You won't need me to tell you that worry can cause new symptoms of its own, paralyze self-care & alleviation of old symptoms etc.,
it's apparently been stopping you from accessing support and help on the net - from us nice people (thankfully no more 😏 )
and is the most vicious circle you can get, because it rotates around itself, a self-fulfilling prophecy etc. and......:
that CBT has substantial evidence to help more than half of sufferers, and stay that way, also some meds that might do so too?
And if one therapist can't help, the next or next will....

It then might not help at all, so I won't answer your question 😏.... by letting it slip that things like twitches are OK, 'mild',
and if you say it happens when you yawn it sounds as if it isn't disturbing your sleep by waking you up, the main problem with restless legs.

It might be a good idea to make a priority list of your symptoms. Your piece of paper doesn't need to be big.
Arm twitches don't fit on it as yet (might give a clue to other things some time later).
Your fibro symptoms you say aren't debilitating at the moment, you could praps strike them, too.

So your priority list would seem to have only two words on it: "h. a."....

(I know where you're coming from: anxiety of many kinds was my big mental issue for decades, and it was a godsend to get it down pre-fibro.)
 

AnnaMaria

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Yes you can definitely have RLS in the arms. I get the same classic RLS sensations in the arms as in the legs and also into my hips and lower back. Your RLS symptoms may or may not be part of your fibro, as is the case with numerous other pains and sensations we get. Most of us have other conditions that cause symptoms too, on top of the fibro. Sometimes, although they are separate, just having fibro too, can make them worse. Don't worry about the twitches.
 

MsAmiNickel

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I have experienced the restlessness in my arms as well. Know you are not alone in this - whether in this one symptom or the whole experience. You have a whole community behind you.
 

Jemima

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Hi Charxx,

I agree with JayCS that looking at your health anxiety as something worth addressing would probably be really helpful. Starting out on the fibromyalgia journey tends to come with a lot of fear, and many of us have a stack of traumas that contribute to these feelings - traumas that may well have contributed to fibro in the first place. Speaking of my own experience, doing the work to get a handle on my fears, manage the stress responses that they triggered, and turning the dial down on my roving anxieties was one of the most important steps towards reducing my overall symptoms and feeling calm and in control of my life once again.

A while back, I wrote back to someone who was having trouble with stress, which you can read here, keeping in mind that it applies very much to anxiety too. Even if you have ongoing concerns about your health - as many of us do with all the weird symptoms that fibro can randomly throw at us - and want to be sure that you spot if something else is going on, it shouldn't be something that leaves you feeling emotionally frayed and zapped all the time. You don't deserve that!

Sorry if I've gone off on a side tangent that doesn't feel relevant to you, but I know how debilitating anxiety can be. Wherever this journey takes you, you're absolutely not alone. I wish you optimal wellness and empowerment ahead 🌻
 
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Charxx

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Thank you so much all of you for your lovely replies, it's so comforting to know that I'm not alone.
Unfortunately I've suffered with anxiety since 2009 and I've been on an off of meds for alot of it (except for in pregnancies). I have taken part in cbt classes and spent thousands in private therapy which included hypnosis. It does work temporarily but I've had to accept that I will always be this way sadly.
I have a wonderful life, happily married with four children and re training in a legal career which I've always wanted to do...
It makes me very sad when this gets in the way.
Thank you again all of you xx
 

Jemima

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Thank you so much all of you for your lovely replies, it's so comforting to know that I'm not alone.
Unfortunately I've suffered with anxiety since 2009 and I've been on an off of meds for alot of it (except for in pregnancies). I have taken part in cbt classes and spent thousands in private therapy which included hypnosis. It does work temporarily but I've had to accept that I will always be this way sadly.
I have a wonderful life, happily married with four children and re training in a legal career which I've always wanted to do...
It makes me very sad when this gets in the way.
Thank you again all of you xx
Hi again Charxx,

Well, I think you're a true warrior for navigating through all of that. Thank you for your kind words.

One thing that I didn't mention that helps me a lot with anxiety in a Magnesium Glycinate supplement. Honestly, I was dumbfounded by how much such a simple and common thing could make a difference, as it trumped the results of every medication I've ever been prescribed - although, of course, we are all a little different in terms of what lies behind our symptoms so what works for one will inevitably not work for all. But, perhaps have a Google of Magnesium for anxiety and see if it chimes with you.

As for the rest - the pain, the fog, the restless limbs, and whatever else comes at you (and simply for the ongoing struggle, whenever you just need to vent) - we're all here, anytime ☀️
 

TJB

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Hi,
I suffer from what your describing. Diagnosed FM ME/CFS, though I do have some other diagnosis but unlikely to be connected to the others.
For me it’s when my FM Me/CFS is medium to bad, less on my better days (could do with more of the good days!).
x
 

Looby69

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Me too!
Sometimes mine come from my lower spine and my body jerks. Usually when at rest. I told the neurologist about my arms jerking (before my fibro diagnosis), this was also after a 25 minute episode of clonus in my legs. The neurologist said he wasn't concerned, which did put my mind at rest. The jerking for me can be quite alarming when it happens as its usually in the midst of a flare when there are loads of other things going on too 😖
 

pcjann

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Hi Charxx,
Yes indeed. Restless arms do exist. I have had restless legs from my teens, then began having restless arms. Shoot, can one say we have a restless body? ;) Anyway, I too have much anxiety as well...and have had for many years. I feel for you, and here is the thing...it might sound like an old cliche, but you have one day to live in, and in that day, do the best you can. I have found that doing all the research I can do to find out about a thing helps take the anxiety away, so I am not "guessing" at a problem. Then, I take steps to try to get the answers I need...doctor, meds, etc. to help alleviate the anxiety. Then, when one thing hits in the day, I take that day and do the very best I can. I have fibromyalgia, chronic fatigue, pain, pain, pain, as you all have...and I do the best I can. I lived in fear for so many years and learned this saying: FEAR=False Evidence Appearing Real. So, all that said, find what works for you, and go from there...
 

JayCS

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FEAR=False Evidence Appearing Real.
Reminds me of a very helpful list for anxiety/fear: FACE - ACCEPT - FLOAT - LET TIME PASS.
Yeah, sometimes I had to shout it at me, to cut thru the panic & hurt and
stop suppressing it by trying to distract myself by doing something else (which increased and prolongated it 10-fold).
 
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