Muscle Twitching

[Deano]

Hi Looby69,

Thanks for the reply and hello,

Its a horrible feeling when you Google muscle twitching and ALS comes up but from what I've read and been told there is usually always some kind of weakness or muscle wasting before twitching in ALS? I was terrified I had it aswell but was also told the longer the twitching with no other symptoms the better and also the twitching is widespread whereas with ALS it tends to stay in one place and then spread not just be random over your body. They say the test to have to rule ALS out is an EMG muscle test. Twitching is a symptom of fibro aswell so I'm leaning towards the fibro side of things at the moment and also my GP said he wasn't concerned about the twitches but to come back if I started experiencing weakness. The popping ones in my legs seem to be when Im resting but the ones in my right arm only seem to happen when doing strenuous/repetitive things. It's really weird as I've never had this as a symptom in my 10 years of having fibro!!

The throat thing is a weird one for me as it only seems to be a painfull spot in my throat that hurts when I do a deep swallow. It comes and goes. I have an app with an ENT booked in next month so hopefully they can have a look down and see what's going on. I do wonder if this is fibro aswell and wether it's related to throat muscles?

I would think that you would've had more symptoms come on by now if it was ALS as that is progressive and it doesn't come and go but slowly gets worse over time. I would believe the neurologist you have seen as they are experts in that field.

I suffer with health anxiety also and it is horrible. Every new symptom I have I end up googling and then going into panic and stress mode which I'm sure adds to the fibro pain!!!

Did you see my link in the thread with regards to another condition called Benign Fasciculation Syndrome (BFS)? It's a condition that's very similar to Fibro and I'm wondering if I may have this aswell as fibro.

Take care

 

[Fibrotortoise]

Hi Deano,

I'm new to the forum and can't add much to the advice already give but just wanted to let you know you're not crazy. I too get twitches and muscle spasms on an off, from a single area of my skin twitching rapidly to the whole muscle group and everything in-between.

I've found it is both caused by and causes pain, muscle fatigue and low mood. It's often linked to what I have on in my life at that time. However, in my experience it has never been anything to worry about unless it physically stops you doing something like safely holding a drink.

Sunkacola's recommendation of a TENS machine is good advice. It often breaks the cycle of overstimulation or tension and allows your body calm down a bit, probably one of my best coping mechanisms. Also warm baths and topical gels.

The same goes for new and random pains. I had a similar pain in my throat after getting tongue cramp from yawning too much (yes, I didn't think it was a thing either). I did find that although it didn't really hurt straight after, using my tongue seemed to aggravate if for a few weeks.

I must stress that it is still worth getting things investigated by your GP. Every FMS symptom seems to overlap with so many unpleasant or easily treatable things. You can never really have the attitude of "it's probably just my Fibro".

Hope it eases soon!

 

[Deano]

Hi Fibrotortoise,

Thanks for your reply,

Looks like it's quite a common thing then this muscle twitching. I did visit the GP and he said he wasn't concerned but stressed to come back if I experienced weakness and like you said that is clinical weakness like not being able to hold things, button up your shirt, open jars or your leg giving way and not being able to climb stairs etc....

I guess I've just got to wait and see if it gets better or not?

Just out of interest how long have you had the twitching for? Mine has being going on for around 4 months now.

Take care.

 

[Fibrotortoise]

I've had Fibro for about 31 years, since I was a little boy and thinking back it can last for a good chunk of time, where I will have at least one muscle twitching somewhere for months at a time.

I had it throughout my education, just every now and then I'd notice my upper arm or a chest muscle twitching, especially when trying to get to sleep. It can also be seasonal or sometimes nutritional, vitamin or mineral levels. It's tricky to pin down.

I will admit that although it feels odd and can be distracting my twitching doesn't affect me too badly. It can be a bit embarrassing when someone points at your thigh muscle vibrating through your trousers and says "what the hell is going on there"

Does it affect you quite badly at the moment?

 

[Deano]

I think the only thing that affects me at the moment is the worry that it could be something else and not fibro?

Mine seems to be triggered through repetitive/strenuous activity (Well at least my right arm twitches do) An example is that last week I was doing some jewellery plating that involved moving my hand in a side to side motion on and off for about an hour and a half. Low and behold I started having twitches on the sides of my hands below where the thumb and little finger join the hand which made my little finger visibly jerk. I now have pain in that side of my hand. I did some sawing last week and had muscle twitches in my shoulder going into the tol of my arm (Quite hard rapid firing twitches)all morning. I tried unscrewing some screws using force as they were tightly screwed in and again had twitching in my upper arm. But 5hen I have these weird popping twitches in my calves and thighs when resting.

I guess the main concerns are why all of a sudden has it come on and what if it's not fibro related? I suppose I've just got to see if it calms down or goes away and try and block it out and forget about them (Which is what the GP said) easy for him to say though when he's not the one twitching. Lol.

Thanks for replying. Take care.

 

[Fibrotortoise]

I was going to say the same thing. It's fine for him to have a "wait and see" attitude

 

[sunkacola]

I think the only thing that affects me at the moment is the worry that it could be something else and not fibro?

It's very important for you to use your self discipline to stop yourself from this worry. It cannot do any good and in fact is almost certain to me making all of your problems worse. Put your energy into taking care of yourself, and make yourself stop doing the worrying that is exacerbating your problems.

 

[Deano]

Thankyou,

I have tried yesterday and today to stop searching the symptoms up and am going to continue to try and carry on with life and not to worry (as much) I'm also going to start some light exercise as I think this helped me a lot before. I used to swim and jog and built myself up to hardly any pain as my muscles were being worked but then foolishly stopped and now ache all over again!!! It's one vicious circle!!!

 

[Gardener]

Hi,
Please look into LDN-low dose naltrexone. I had fibromyalgia for over a decade and was on narcotics for the last 7 years of it. It was pure survival mode. I would take just enough pain meds to take the edge off to take care of my son.
I had to quit my job as RN. I have tried everything:anti-inflammatory diet, acupuncture, supplements, juicing, CBD/THC oils, ant-depressants, chiropractors, massages, meditation, opioids, exercise(cardio/weight training) and psychotherapy.
Last year I was referred to a new pain doc and he introduced me to LDN. I had to stop all pain meds cold turkey and started LDN 4.5mg daily at night. I noticed the first week the brain fog, pain, and fatigue decreased significantly. Month later there was still lingering symptoms so my md increased my dose to two tabs total of 9mg. That completely took all of it away. I wake up every day feeling great! Clear headed, energetic, and pain free.
Only side effects was insomnia and vivid dreams for a week. Please try it and pass on this information. I can’t believe this is not the first line treatment instead of opioids.

 

[Creola17]

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.

This really gets to me. WTF happened to caring doctors? After my kidney stone incident I no longer trust the doctor I was seeing. I don't really know where to go. I have enough thyroid pills for a couple of months but I should get my blood testing done. Found a lab online but it's expensive. Sorry to change the subject , just been wishing I could find a real doctor that has compassion. Tired of the way they have treated me.
Maybe it's because I'm old. Does anyone get treated poorly because they are old? About to turn 70 so maybe the doctors think I don't matter anymore. No respect.
Thanks for letting me vent. I hate to complain but there it is.
(((gentle hugs)))

 

[Jemima]

This really gets to me. WTF happened to caring doctors? After my kidney stone incident I no longer trust the doctor I was seeing. I don't really know where to go. I have enough thyroid pills for a couple of months but I should get my blood testing done. Found a lab online but it's expensive. Sorry to change the subject , just been wishing I could find a real doctor that has compassion. Tired of the way they have treated me.
Maybe it's because I'm old. Does anyone get treated poorly because they are old? About to turn 70 so maybe the doctors think I don't matter anymore. No respect.
Thanks for letting me vent. I hate to complain but there it is.
(((gentle hugs)))

I'm sorry, Creola, that sucks I'm not surprised you're tired of it. I hope your next doctor has a far better attitude.

 

[Deano]

It seems to me like they always adopt a wait and see approach. The things that they should do first end up being done last (Because of cost) but for some it's too late by then. It's hard to find a really caring, understandable doctor these days and when you do you can never get an appointment for weeks!!!

 

[KB12]

Hi everyone,
I could have written some of these posts myself. I, too, suffer from muscle twitching and widespread pain. Fortunately, I have been under the care of compassionate neurologists who order tests for peace of mind. I have had an EMG and nerve conduction tests to rule out sinister causes and have since been diagnosed with benign fasciculation syndrome. I have also had brain and spine MRIs. All of the neurological tests I have had have come back normal even though I am certainly having neurological symptoms. It does cause me incessant worry but the normal tests provide reassurance.
I am thinking of you all and find these forums so reassuring that many of us are experiencing the same thing. I feel like my fasciculations are definitely exacerbated by stress so like Sunkacola says, it is important that we all try to contain our worry. My very best wishes to you all.

 

[Deano]

Thanks for the reply KB12,

Wish I could find a compassionate neurologist!!! That's great that you are able to get these tests done on a regular basis. It certainly should make you worry a hell of a lot less.

Could you elaborate more on your fasciculations? How long you have had them, where you have them, the intensity of them and wet here you've found anything that helps with them?

It's reassuring to know that these twitches are quite common in fibro. I think ive started to stress less about mine now and have stopped scrolling the web as this was only making my mind wander more!!!

Take care.

 

[sunkacola]

Oh yeah. Twitches are very common. No need to worry about that in particular!

Although -- just stating for the record -- if something new starts up in your body it's always good to get it checked out with a doctor, since even though we tend to attribute everything to FM, not everything actually is a manifestation of that.