Fibromyalgia Action UK
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Just finished work. Working with that person who made the comments about fibro. She is now telling me that muscle twitching normally means motor neuron disease, and that is my greatest fear. I just don't know which way to turn. My neurologist and GP both say I don't have it, but she says it is often missed. I know I should take no notice but it is so difficult. I thought things were improving but obviously not. Seeing GP in just over 2 weeks

13 Replies

Hi Is this person a medical professional? I have had a look at motor neuron disease symptoms and it say noting about muscle there a reason you think you may possible have this disease? That person should keep her mouth shut about things she knows nothing about. I wouldn't mention any other symptoms you get as God only know what she will tell you have. by all means discuss it again with your GP, but I really think this person at work is just winding you up or she have some other sort of problem herself.



Hi Holly1950

WOW!!!!!! I am totally gob-smacked by that persons comment. I presume it must have been a wind up? motor neuron disease is what Prof Stephen Hawkins has got. I think it was a horrible and malicious and nasty thing that has been said to you.

On behalf of the rest of the human race with some decency, respect and common sense, I will apologise to you on their behalf.

Please don't worry yourself about having something like that. Muscle twitching can be the result of 101 million other things such as fatigue, straining, medications, being in one position to long, nerves, tiredness, the list is endless.

Needless to say please don't lose any sleep over this.

All my hopes and dreams for you

Ken (the author) x


Hi Holly, one very important lesson in my life that I have learned is not to listen to people who like to think they know everything about everything. If I were in you position I think I would try and steer clear of this person as she clearly either wants to worry and upset you by what she is saying, l agree with Mazz, try not to engage with her in any discussion about your health as to my mind it is only damaging you further. Like Mazz, I have looked up info about MND and there are very very few references to tremor and where tremor is mentioned it is in relation to trembling of the hands and fine motor skill movements in patients with advanced MND

As I think I said to you before, I have sadly lost two friends to MND and I can honestly say, I was never aware at any point of them having tremors.

I would urge you to hold on to the information you have been given by two professional people who know exactly what they are talking about, and stop listening to someone without their knowledge who for some strange reason wants to worry the life out of you by scaremongering !!

You could, if this silly person has really worried you, give your doctor a ring, tell him your concerns and what your work mate has said and let him reassure you like we are trying to do, that this person really doesn't know what she is on about.

Take great care Holly, and try to listen to people who are either health professionals or who have experience which leads them to informed understanding and knowledge.

Sending positive healing vibes your way :-)

Foggy x


Thanks I will mention it to my GP. I have finished CBT but I feel I am back to square one and feel lower than I did before. I think my family are sick of me being lime this and think sometimes they would be better off without me


When I go to see my GP I am going to try and get a diagnosis . Things have been getting worse for the last 2 to 3 years. Muscle twitching does occur in MND but it is normally after the nerves have died. The twitching is like an electric shock trying to get the nerves to function again so I have no weakness so I shouldn't have got it. Just need to convince my brain. It is along story. When I am off work I will try and tell you. Really appreciate your replies. You are a very caring lot


Hi Holly

I echo what Mazz, Ken and especially Foggy all say to you with respect to your friend causing you health anxiety. I've been treated for that professionally for the last 6 years because all I wanted was a diagnosis for my never ending growing amount of health problems and the pain and dislocations I was dealing with regularly. My health started to go downwards in 2003 and I worked for another year after that when my body couldn't handle the stress anymore I had to stop. I was 31 years old and trying to build a career and I lost that. Not being believed is soul destroying enough without thinking you have every illness that echoes your symptoms..... trust me I know!

Health anxiety is a serious illness Holly and for your friend not to respect that is very sad. Does she know that you have this illness and the devastating effects that it can have on your health when you are constantly worrying about having some nasty disease? She is not a medical professional and like the others tell you, you should only listen to people who are regarding diagnosis and what your illness (es) may be.

Speaking to your GP about how you feel that CBT didn't work for you is also beneficial as it may mean you need further sessions. It is best to get a grasp of the health anxiety so that the medical professionals can start to assess you properly for diagnosis as the anxiety itself causes a variety of health complaints.

I hope I don't come across as being harsh Holly because it is not my intent hunny, I'm speaking from experience and the troubles that I had and what I learned from stressing all the time about whether I had MS, or cancer or some other wasting illness. I am fairly sure your doc would have picked up on whether it was MND for example and trusting your GP is vital. You need to focus on controlling the anxiety as it is making you ill and that feeling of desperation where it hurts inside will subside the more you learn how to handle it and not let it handle you................ like it is at present.

I feel for you and your frustration Holly and I wish you respite from that :)

Calming and relaxing fluffies for you Holly

:) xxxzebxxx :)


Dear Holy I am throwing you a ball of tinsell catch you must take the person at work with a pinch of salt ! There is aleways someone who thinks they know what we have Oh it is ...... No Mdear it must be........... My Bob he came down with it you know .................. Aunt cessilly always says the Moon is blue but dont you go listening girl!

Basically dont listen she doesnt understand or have knowledge of our disease. So you are going to have to practice the art of listening answering and casting out what info you know is irrelevant!

Good luck



Dear Holly, never, ever think that your family would be better off without you....EVER. I care for my disabled husband, and yes life would be less difficult without the mountains that being disabled places in your way, but he gives me so much. He is my rock (not the other way round notice). The times we share, the laughter we have. I KNOW that without him a light would go out in my soul. I have also looked after my grandson (CFS) and he too has raised my spirits, made me laugh, made me so proud of him with his lack of self pity. By just being here each and every one of us gives and brings things of good and worth to another person. Remember that. When you are too tired to do housework, you can still listen to another's problems and offer a cuddle and some insight. Sometimes just being able to do that is enough. :)


There's a difference between real concerned acquaintances and that 'know it all' we all know (and love?)! The latter usually have no people skills whatsoever and don't realise what damage they are doing to already vulnerable people. I know it's hard to ignore but try and stay focused.

My GP, who is wonderful and very supportive, guided me to the website,

It is the site that the Doctors (at my surgery anyway) use themselves as a quick reference guide. It is an extremely well designed site and very easy to find your way round. (It also comes up as an App. if you have a smart phone, tablet etc.)


Hi there,I have had muscle twitches really bad for 4 years & I was diagnosed with Hyperventilation syndrome... It's all to do with my breathing...when I stop breathing my muscles (mostly in my legs) twitch hard. I can also twitch anywhere else on my body -arms-head-back-jaw etc.... I thought I must have MS or something but that's what I was told. I have tried different tablets from my Dr but nothing has stopped them or helped at all. The twitches can be very annoying especially if Im holding something & a twitch makes me drop things or in my legs make me stumble. But I have now learnt to have to live with them,it can be funny when my dog is resting on my legs & he keeps being kicked.... I do hope you find out through your Dr what it is.... Lovvvveee soozie :-D



Best advice is to ignore her and ask your GP who is far better qualified to make diagnosis. And I have a friend who twitches and jerks and it's not MND. There are people who are very good at spouting worrying 'information" when the truth is they know nothing. Stick your fingers in your ears and sing " la,la,la,la, la I can't hear you! " :-)




hello holly, please don't listen to that women. it will only wind you up. I have the hands shaking muscles twitches and feel my muscle spasm pulling tight and releasing, the thing that help to calm it down, but not gone away completely is called clonazepam one tab at first not enough, two was good, then I came off this slowly but with in days all these symptoms came back strongly, so went back on them and things have settle down again. hope this gives you confidence to talk to your gp and guide you and help with this, this seems to be the norm for me with the fibro good luck I hope this helps


Dear Holly, please do not worry unnecesarily, i have been twitching to the extent that i throw things across the room, am extra careful with knives, scissors etc. Experts dont know everything, so why should your work-not-mate know more!


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