Twitching, achy, worried

[Saramiah]

I suddenly started feeling incredibly achy about a year ago. Dry eyes, stiff, sore. I feel weak and wobbly. Then I started twitching. That’s what’s really scared me, because my calf, thigh, arm, lip, eye, all keep twitching. My hands are sometimes visibly twitching and I have to wiggle them to get the twitching to stop. I’m convinced I keep dropping things.

I’m 44. I’m convinced I’ve got ALS or something. I’m having panic attacks because I’m scared.

The doctor says I haven’t but I’m worried they’re wrong. They said my reflexes are fine, they asked me to grip their fingers and said I don’t seem to be weak, got me to walk in a straight line and said I’m fine. They did loads of blood tests and said there’s nothing wrong with me except anxiety. Yes I’m anxious - about the symptoms! I wasn’t anxious before this started!

I had loads of blood tests and there’s nothing wrong. I tried magnesium, zinc, vit D and B, iron, calcium, but nothing helps. My blood levels of those things are fine. Doctors are saying there’s nothing they can do because I’m healthy, all they can do is refer me to the “unexplained symptoms” clinic but the waiting list is a whole year.

Now I’m just sitting here crying because I’m afraid I’m terminally ill and the doctors have failed to diagnose me.

Have you had a brain scan?

It couldn't be peri menopause related?

I had loads of strange symptoms when going through a very stressful time. I was convinced I had something serious.

The doctors won’t give me a brain scan. They said I don’t meet the criteria for any referrals, so if they do try to refer me the hospital will just reject it. They’ve diagnosed me with “functional neurological disorder” which basically means “it’s all in your head and you’re causing it yourself”.

They just keep saying there’s nothing wrong with me, and I feel like I’m being ignored and not helped. Because there clearly is something wrong when I’m in constant pain and twitching and dry eyes.

Google benign fasciculation syndrome - there are Facebook groups full of people who've got similar fears. I was in the same position a few years ago, I concluded it was perhaps a mix of things, I was exhausted and stressed, having too much caffeine, and then perimenopause anxiety kicked in and made everything a whole lot worse. If you have MND, it starts only in one place to begin with, and twitching isn't usually the first symptom. I ended up with bigger health issues to deal with, but all those twitching type symptoms have now gone, and possibly if I do twitch I don't really notice because I'm not focusing on it. It is scary though when you're gripped in that panic.

Thanks Muriel. When it started I didn’t feel stressed at all. I was a SAHM, no job to worry about, no money worries, DC was settled at school. Literally no stress. The anxiety I have now is a direct result of these unexplained symptoms.

I’m aching all over, so stiff, very heavy periods, dry eyes, and I’ve been twitching all the time for nearly a year.

People put it down to all sorts of things, as well it can include the remainder of a virus, medication, I can't remember what else. Doctors look for patterns though and all over twitching doesn't fit the pattern of major neurological conditions, which is why you haven't been referred. Perimenopause may be a factor. I'm not saying that there isn't anything wrong with you at all, it's frustrating when you feel crap but can't work out why, but that it is highly unlikely to be what you are most fearing.

Assuming they tested your thyroid function in all these tests?

FND does not mean "it's all in your head". It's an interruption of the electrical signals in the brain! I suggest you educate yourself.

First thing I'd do is take some good quality magnesium supplement to see if it helps especially if there's muscle spasms / twitches very basic but worth trying / ruling out

I have FND and from what I understand, my nervous system isn't damaged like with ALS or MND but my brain doesn't send and receive signals properly. The neurologists I have seen haven't made me feel that it is all in my head, but I was discharged without any support.

Sounds like perimenopause potentially...

I really feel for you. I’ve been plagued with twitching, cramping, pins and needles (in my right leg) and stiffness all over my body for the last few months. Am under neurology and nervously awaiting my MRI results (had it a week ago.)

All over twitching is not a sensitive measure for MND. MND always presents with muscle weakness and the twitching is a sign of muscles sort of dying so you’d definitely have clinical weakness by now alongside the twitching. Could the stiffness be because you are feeling tense and anxious as a result?

I looked on Google and people were talking about cases of MND that started with twitching and no weakness. It scared me.

I feel weak and wobbly but the GP says I’m not. She made me squeeze her fingers and so did her colleague. Rapped me with a hammer and stuff, made me walk around. Said I’m fine.

Lonelymom123 your lucky to have been able to see a neurologist. The GP won’t refer me. She said it’s functional neurological disorder but I can’t access any expert opinion so what if she’s wrong.

Lizzeybennett I have had loads of supplements in the past year including magnesium but it hasn’t helped. The GP did blood tests and said I’m not short on any of the vitamins that could cause this. Datingdinosaur yes they have tested thyroid.

Theyre just saying there’s nothing wrong with me when there clearly is, because I’m stiff and aching and my eyes are dry, and my muscles are burning and twitching.

I had twitching for a couple of years, it stared 24 hours after I had a vaccination (not covid) it started in my thighs and then spread through my whole body, it was horrific, it also coincided with menopause and a particularly stressful time (though the twitching made me even more anxious) I still get it three years later, generally a lot milder and now I find it more annoying than anxiety inducing.

long Covid? That can cause hideous dry itching sore eyes ( bitter experience)

I really feel for you and completely understand how upsetting it is to be worried about this (and also that feeling of "what if the doctors have missed something")

I've had muscle twitching for about 10 years. I felt exactly the same as you in the beginning and was convinced I had MND. Had all the tests and there's nothing in any of the tests to explain things. But it's very real. I even took a video of my hand twitching once so I could show it to a doctor.

My symptoms seem to ebb and flow - I'm having a bad episode at the moment with extremely painful tight muscles as well as my heart skipping a beat very regularly.

I've never got to the bottom of what's causing this but I am going to try some alternative therapies now out of desperation.

The only thing that's ever come back on my blood tests was low vitamin d. I have corrected that now to "adequate" levels but I wonder if it's still a factor?

I also find that taking oral magnesium does nothing, but topical magnesium lotion/gel onto muscles has some short term relief.

I also have the dry eyes which was actually my first symptom.

Are you taking TOO many supplements? So you're over-vitamined? I know your GP said you're not lacking in any vitamins but it is possible to overdose on them and suffer side-effects as a result.

You have my sympathy. I started with twitching in my 20s after a nasty virus. I am 50 now and my immune system has never really recovered.

My twitches come and go. They do get worse in periods of anxiety or ill health or tiredness but not always.

I had had dry eyes, very achey muscles etc. I have had mris (private medical at work, my gp would t ever refer me).

The only thing anyone has ever found is that I had low vit d and also I have thyroid anti bodies (but so far my thyroid is fine, I just get annual blood tests). I do have hyper mobile joints and a few auto immune conditions in the family so it maybe something like that.

I ramble on to let you know you can definitely have these symptoms and nothing major be wrong. For me, when I started to research it I was amazed at the physical impact of adrenaline and cortisol on your body when you are anxious. It's not 'in your head' it's your body getting into fight or flight mode.

Your gp has taken you seriously. If you told them what concerns you in my experience they listen and keep an eye out for red flags but have found none. Please do try really hard to let yourself believe that which I know is so much easier said than done.

I don’t think so. I only started taking them after the symptoms started, because I was trying to fix the problem. Blood tests show my numbers are within range, the doctors can’t find anything that needs fixing.

Its made me feel better that others have had similar and it’s hasn’t been serious. You can’t help but worry about stuff like this.

Well I’ve been unable to sleep all night because of the twitching. It’s slowly getting worse. I’ve seen about six doctors and they’re all just shrugging and saying pain and all over twitching doesn’t fit the pattern of any known illness except anxiety. But the twitching started before the anxiety!

Did it come on after a vaccine?

Sorry to hear this, you must be exhausted.

Can you try a naturopath or herbalist?
Acupuncture?

I'm also sure that this is down to some sort of vitamin or mineral deficiency. The NHS guidelines can sometimes show the that your levels are adequate when in actual fact the optimum level is much higher.

For example with Vitamin D, NHS will say over 50 is fine, but the optimum level is around 100. And it takes quite a lot of supplementation to get to that level.

Also anecdotally, when I was pregnant I felt so unwell with chest tightness, extreme fatigue where I couldn't put a foot in front of the other. Did lots of tests and they said I was probably just tired because it was snowing and it was harder to walk in the snow.... (ffs!) Anyway a midwife said that although my iron levels were fine, I could try taking iron supplements if I wanted - tried it and felt almost instantly better. Sometimes you need to think outside the box.

P.S. I hate that women are still in 2024 fobbed off a lot of the time with "it'll just be anxiety". Sometimes it is, but sometimes it's not and I think more investigation needs done into certain issues.

No. I’d been camping for a couple of weeks and I had a short bout of diarrhoea. Then the pain and twitching started. The GP thought maybe Lyme Disease from a tick bite but the test was negative. They can’t find anything wrong with me.

Have you tried probiotics? Could be a gut microbiome issue if it started after a bout of diarrhoea.

A friend of mine's son had pain for several years until he was finally diagnosed with a parasitic infection. I'm afraid I can't remember what the parasite was, but he got treated with antibiotics and his pain went away. He went from being severely depressed and struggling to completely fine in a a matter of weeks. But it took years to convince the doctors to take it seriously. (This was not in the UK).