Muscle Twitching

[Deano]

Hi all,

I have been diagnosed with fibro for 10 years now. A new one for me at the moment is muscle twitching. I have never had this before and it started about 3 and a half months ago now with a continual muscle twitch in my upper right arm. This lasted for a few weeks and gradually went away. Now it seems whenever I do anything repetitive or strenuous with my right arm I get muscle twitches? These can range from slight twitches every now and again for a few days to full on 20/30 twitch assaults rapidly going off a few times a day. I have also had minor ones in my left arm and recently had twitching in the sides of my right hand that made my little finger and thumb visibly move (This was again after doing a repetitive action) I also have a slight twitch in lip every so often and what feels like popping (I'm guessing it's a twitch) in calves and thighs!!! Right arm always feels heavy and aches after doing anything (Picking my kids up, arm resting on steering wheel for a while, even washing my hands makes my right arm ache) Hand feels colder than the other and there is a slight tremble in it more than the other when holding them out straight?

Other than the twitching, my shoulders and neck muscles always hurt especially when tensing the muscles in that area. I have pain in all the tender points when lightly pressed and also have had a painfull spot on and off in my throat for 3 months whenever I deep swallow!!!

If I attempt any kind of exercise I will hurt and ache, not straight away but it seems to come on 2/3 days later? I went for a walk the other week and ended up with shin splints!!

The main concern for me though is the sudden onset of the muscle twitches. I've googled these and this only makes you worry about conditions like Motor Neurone etc... So was just wondering if anyone has experienced these annoying twitches as they have never been a symptom of my fibro for over 10 years so am concerned that I have them all of a sudden now??

Thanks.

 

[Jemima]

Hi Deano,

Welcome here! Muscle twitching isn't something that I often experience, but it's something that's come up quite a few times here on the forum. If you use the search function, you can find older conversations about twitching. Apparently, it can indeed be a symptom of fibromyalgia, so may not be a cause for concern, but it's usually a good idea to get checked out when a new symptom appears, just in case!

Throat pains can also come with fibromyalgia, and its worth being aware that they can also sometimes indicate that the condition is impacting thyroid health, so perhaps another reason to go for a check up.

That delayed soreness after exercise is called delayed onset muscle soreness or DOMS for short, and yep, you guessed it - it's another possible fibro symptom! I also have this if I overdo it with exercise, or if I'm generally run down. You might find that supplementing with acetyl l-carnatine helps with that if it keeps causing trouble.

I'm guessing that if you've had the condition for ten years, you probably know your body pretty well - but are experiencing a shift in the usual parameters of what you can typically manage? I wonder, has anything changed for you lately; are you going through any kind of stress that might be causing a flare? Try not to worry as far as you are able - the more you allow what's going on to stress you out, the more triggering that will be in its own right. As I'm sure you know, fibro is often a vicious cycle in that sense. It's good to investigate, but try to keep the faith that whatever is going on, there will almost certainly be a way to work through it and get back to your baseline. I really hope you get to the bottom of what's up and feel better soon!

 

[Deano]

Hi Jemima,

Many thanks for your reply.

I did visitt my GP with regards to the muscle twitching and his response was that he wasn't concerned and that I should try and forget about it and get on with my life. Easy to say when you aren't the one twitching all the time!!! Another GP said all seemed fine and to come back if I was experiencing any weakness. I have had some twitches today in the top of my arm for 5 hours and it was due to unscrewing some screws that were really tightly screwed in. Weird!!!

With regards to the throat pain. I have a phone consultation with an ENT booked for tomorrow as the GP thought it warranted being investigated further as it's been going on for so long. I have also noticed that my salivary gland on the same side as the soreness is 2/3 times larger than the left? I have had blood tests and all those came back normal but I was just borderline low on Iron. I wonder if they checked thyroid aswell??

I've never heard of DOMS before but that is exactly how my muscle pains tend to be for example f I wash the car then a couple of days later my arms, shoulders and neck will be hurting and I'll think how have I done that but then realise it was from washing the car as when I re-create the action I get the pain.

You say about stress and yes I find the more stressed I am the more pain I get and the easier it is to bring the pain on (If that makes sense?) The weather is another thing that causes my flare ups. My body hates the cold!! I had a bit of a stressful time around the time of the 1st muscle twitches when I had to suddenly leave my current work premises and move to another. I also have 5 kids including 4 year old twins so home life is very stressful. It was also a couple of days after having my 1st covid jab that thd twitches stated so I was wondering wether that may have started it?? I also think that since I was diagnosed with fibro 10 years ago I have developed a health anxiety which is horrible as before then I wasn't a worrier. Like you say it is one vicious circle.

I guess I'm just going to have to see how things develop but like I say this muscle twitching is something I've never had in the 10+ years of having fibro but I suppose new symptoms do just come out of the blue as we can't just all have every single symptom of fibro right from the onset?

Thanks again for replying as it's good for me to talk about things and see people are going through the same things and having the same symptoms. THANK YOU.

 

[Jemima]

Hi Deano,

Any time!

Yes, weather can be a real trigger for so many people, and stress impacts me exactly as you describe. It also took years for all of my symptoms as they are now to manifest, so I imagine something new could pop up after a decade. I do doubt that the vaccine could be the root cause of your twitching - but rather imagine that the stress of getting it, compounded by the work change and everything else that you're juggling, could have tipped you into a flare with new symptoms. Swollen salivary glands is another really common thing with fibro - I get that one too - and is another thing that has also been discussed here in the forum many times. A study earlier this year demonstrated more clearly than ever that this condition has an impact on our immunity, so it's not surprising that our bodies have to battle when the condition ramps up.

You mentioned that you've been struggling with health anxiety over the years, so why not take this period of feeling worse as a cue to try to get a handle on that? I know it's not the same thing, but when I was first struggling with fibro, I was stuck in a really bad way because I was having a very strong fear response to the pain. The more I hurt, the more afraid and stressed I became - I wanted to react and fix it, but I couldn't - which in turn was triggering my symptoms horribly.

To regain control of the situation, I worked with an amazing psychologist who introduced me to the idea of radical acceptance. I had to work very hard to embrace the idea that fibromyalgia isn't a threat to me - it feels bad, but the pain isn't a threat. He got me to do body scan exercises (you can Google this!) every day, while telling myself that what I was feeling was just a presence, and I could let it come and go with total acceptance, because it wouldn't do me any harm. This felt really counter-intuitive to begin with because I was afraid of acknowledging the sensations, but once I got comfortable doing it, low and behold the pain and other symptoms started to lessen!

It also really helped me to understand the difference between the sympathetic nervous system (survival/fight/flight/freeze) and the parasympathetic nervous system (heal/rest/repair/digest) within our bodies. Those of us who get stuck in a stressed state end up with the former in the "on" position, which means our bodies are not funneling their resources towards wellness in the way that they should be. Things like meditation, breathing exercises, and relaxation techniques can help us train our body to switch to the latter when practiced every day. Perhaps have a Google of that too!

With a big family and a lot of responsibility on your shoulders, I know you can't control everything external in your life that may be triggering you, but with some strategic practice, you may be able to boost your resilience and free up some resources, so your body can navigate it all a little more easily. I hope you start to feel better soon and that the twitching calms down - keep us posted on how you get on!

 

[Deano]

Hi Jemima,

Thanks for replying again.

I'll google and try some of the things you have mentioned. Thanks.

Another thing I came across with the twitching was a condition called benign fasciculation syndrome (BFS) and am now wondering wether it may be this that I have as the muscle twitching has been on and off now for 4 months and I get twitching in other parts of my body. I was thinking that if it was anything more serious something else may have reared up by now? So I guess the longer it stays just twitching the better really? Also it says that with BFS it can be with you for a few years and then just disappear? So really it's just going to be a wait and see approach I think. I am now trying to do less things with my right arm also to see if this helps at all and may start a journal as to when I have the twitches and what I was doing to cause them?

Thanks again for all your advice it's very much appreciated.

 

[Jemima]

Hmm, BFS does seem like a possible fit. I'll try to remember that one - I'd never heard of it! Reading the Wikipedia page, I see that it mentions anxiety as a symptom, and also thyroid issues as a possible trigger. It also mentions magnesium deficiency - a lot of people with fibro respond very well to magnesium supplementation (me included) so you could consider that an option!

Keeping a journal is fantastic for getting to the bottom of symptoms and causes. I did that too and found patterns I had no clue of! I think the approach you describe above sounds very wise, and wish you all the best

 

[Deano]

Hi Jemima,

I've been taking magnesium for a couple of months now aswell as vitamin D supplement and multi vitamins. Just out of interest what dose magnesium do you take? I am currently supplementing with 375mg per day and wonder wether that is enough?

I'd never heard of BFS either until I googled muscle twitching and that was just one of the conditions that came up along with fibro and a few nasty ones to like ALS!!! But I had read that you would have weakness and atrophy by now before getting twitches? I find Dr Google can be a bad thing sometimes as the first thing that comes up is usually the worst thing you could have!!!

So how long have you been diagnosed with fibro for??

 

[Deano]

Just checked the Wiki on BFS and it resembles fibro symptoms as well. Interesting.

 

[Deano]

Living with Benign Fasciculation Syndrome: Causes, Treatments

Benign fasciculation syndrome is a fancy name that simply means harmless muscle twitching that’s accompanied by cramping and maybe exercise intolerance. Technically, everybody experiences benign fasciculation syndrome sooner or later. The variables are duration and …

scarysymptoms.com

Interesting read.

 

[Jemima]

Just checked the Wiki on BFS and it resembles fibro symptoms aswell. Interesting.

We always seem to have to put our detective caps on with this condition!

 

[sunkacola]

Greetings --- I have not read the whole thread (please excuse me, but I am trying to catch up after not having had my computer for 5 days).
Just wanted to say that I also get muscle twitching, and have found that a TENS machine often helps with that.

 

[Deano]

Thanks for the reply Sunkacola,

Just interested to know the extent of your muscle twitching? Have you noticed anything that triggers them? Where you get them and how long it has been going on for?
I've been having them for 4 months now. Mainly in my right arm bicep/shoulder area and seem to trigger from repetitive or strenuous activity? They can be slight twitches that come and go or they can be there for hours and sometimes days. The very 1st time it started it was in my bicep region for over 3 weeks on and off. Sometimes they can be really rapid and hard firing like 20/30 hard twitches straight off or they can be very subtle twitches. I also get a popping popcorn like feeling in my calves and thighs and have felt a slight twitch in my lips every now and again.

Just makes you panic a bit when you search Dr Google about muscle twitching and see the results that come up!!

I'll give a tens machine a go and see if it helps.

Looking forward to your reply.

Thanks

 

[sunkacola]

Hi Deano, I have so far only gotten that in my legs. I have not been able to attribute this to any one thing in particular. the kind of twitchy legs I get is different entirely from the feeling I have (which is sometimes a bit twitchy) after strenuous activity, although it would be hard to describe the difference.

Sometimes I get what I call "the parfait" in my legs. That is, on the bottom, a deep sort of pain or ache that feels as if it is my bones hurting rather than muscles. In the middle, it is the twitchy muscles, and the feeling constantly that if I move my legs it will feel different, resulting in my moving my legs in twitchy movements constantly. Even though I know moving them won't help, I keep moving them because the feeling of needing to is so strong. Then on top is the nasty feeling of having a few hundred ants crawling all over my legs and biting them.

This has been going on for many years, the twitchy legs part. The other two levels are more recent and came in when I developed FMS.

Fortunately I don't get that "parfait" all the time, and more often it is only one or two of the three at once. The twitchy combined with the bone-deep ache is the most common.

The TENS helps with all of those, especially with the ants-crawling feeling, which is kind of counter-intuitive when you think about it. It is not a magic cure or anything but it definitely helps to relieve at least some of it most of the time. It sends little electrical shocks into your body at the points where you attach it, and you control the level of them with dials, from barely there to very strong. Doesn't seem as though something like that would help when your muscles are twitchy, does it? But it can.

Whether it works well for you or not only you can find out. In the USA you need a prescription to get one but they can then be ordered online for about $50. It turned out to be a good investment for me, and I hope it works for you as well.

I always recommend that people stop using Google to look up symptoms. It never helps because it cannot diagnose, and all it does is raise your stress level which will make your symptoms exacerbated.

 

[Deano]

Thanks for the reply,

I get those bone aching pains aswell. It's like a deep, burning, gnawing radiating pain that seems like it's in the bones rather than the muscles. It comes in waves. I also get sharp shooting pains that feel like someone is stabbing you with a hot poker or piece of glass. It's my neck, shoulders and arms that give me the most pain though as they are constantly aching. If I bend over and tense my shoulders they absolutely kill. If I wash the car or do anything strenuous I will ache for days but strangely the pain doesn't start till a few days after? I also have pain in all of the tender spots when pressed lightly.

It's miserable isn't it!!!!

 

[Looby69]

Hi Deano,
I've been following your twitching post since you posted as I too am experiencing fasciculations throughout my body, including my face and lips. I was diagnosed with Fibro in June this year after many clear bloods and a clear MRI of head, neck and spine. I was speechless when everything came back clear as so many of my symptoms seemed to be neurological.
I am also suffering the muscle pain that you mention, that deep dull ache accompanied by shooting and stabbing pains.
I've just been diagnosed with a frozen shoulder which is causing me severe discomfort and numbness in my right hand/arm. I have also been experiencing issues with my throat. I can't say it's difficulty swallowing as I'm able to eat and drink with no issues. However, my throat feels like its clunking when I Swallow saliva and then other times it feels like I have a marshmallow wedged in my windpipe. It's uncomfortable and scary. It also comes with deep dull ache between my shoulder blades.
All of my symptoms point to ALS which it quite a sobering prospect. However, when I read up on Fibro, all of my symptoms can also be attributed to Fibro. Of the 2 illnesses I know which my preference would be.
I've got an appointment for a barium Swallow on Monday and have aired my concerns with my GP who said that diagnosing ALS is not straightforward, of course this did nothing to alleviate my stress and worry.
What I saw the neurologist back in May after my MRI, I questioned ALS/MND and he was quite sure that it was neither of these things.
I would give anything to believe that this were true but with so many other symptoms, cracking joints been another. I can't help but fear the worst.
Like others I do suffer from health anxiety and I have good days and bad but at the minute as I sit here twitching and in pain, I do worry.
On the plus side, I get out every day and walk for at least 60 minutes. My legs are pretty stable, although back in March they both went in to uncontrollable spasms for nearly 25 minutes, which was a terrifying experience. This was also mentioned to the neurologist but he didn't seem concerned. I've seen a rheumatologist too who diagnosed me with Fibro and sent me on my way with a leaflet and 10mg of Amtriptyline which I've never taken.
So that's my story. Hi everyone