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 thought about sjorgen (sp) syndrome? It's an auto immune disease which causes dry eyes and skin and joint pain.

I’ve had ANA tests which showed no autoimmune issues. Based on this they ruled out a number of possible causes. Apparently if it was autoimmune they would know.

Now the nerve in the side of my face in front of my ear is twitching. It’s scaring me because when I google twitching it says MND 😭

I had similar and weirdly it was because of too much histamine in my body.

I got signed off work with stress for two weeks to deal with my anxiety. I went on a low histamine diet for a couple of months and was then able to reintroduce food. Some gut bacteria can make histamine so I used probiotics as well.

Sjogrens syndrome?

I would definitely consider the possibility of Long Covid and do some reading about it. Also read about post viral ME/CFS.

Common symptoms include fatigue, achy muscles, feeling weak or dizzy. This can also get worse 1-2 days after you have used more energy (called post exertional malaise).

Long covid can also cause up to 200 other random symptoms including dry eyes and twitching. Some people get internal vibrations which can be very distressing.

It could be useful to look up a list if LC symptoms and see if any match yours. Other common ones are brain fog, heart palpitations and anxiety. The other thing with LC is that is doesn't show up on blood tests or scans. It has similar symptoms to Lyme's disease so the fact they've tested you for that says it's something similar.

There are 2 million people with LC in the UK alone and that number is growing.

If it's at all a possibility, you could speak to your GP and ask for a referral to a LC clinic (if they still have one in your area). Good luck.

They said Sjogren is autoimmune so it would show up in my blood work.

I didn’t have Covid near the time the symptoms started. I had it about a year previously but I recovered and I was fine.

In the last 24 hours my temple has started to twitch and that side of my face is burning and I have a headache. I called the doctor and they said stress. I’m just at the end of my tether with the whole thing. They don’t believe me.

Not being believed is so horrible. I know you had covid a year before, but is there a chance you had it again asymptomatically nearer the time?
I really hope you get some answers OP, or that your symptoms go away.

How are you today @Saramiah?

I thought I hade Lymes disease, tick bite and bullseye rash - the test was negative. During my research of the problem I found this - "During the first four-to-six weeks of Lyme infection, these Lyme disease tests are unreliable because most people have not yet developed the antibody response that the test measures. Even later in the illness, the two-tiered testing is highly insensitive missing roughly half of those who have Lyme disease."

I'm recovered now, but I still think I did have it.

Thank you for asking. The migraine has mostly gone and the twitching in my temple has stopped. I did see the doctor this morning and he basically poo-pooed the idea that I might have MND. He said I’d have weakness and be falling over and stuff, and I’d be having huge muscle ripples that last a while, not just twitches. He said twitching is very common and I need to take vitamins and electrolytes.

Do you feel reassured by seeing the doctors or are you still worried about things?

That's good news then.

I’m still worried. My muscles are burning and twitching all over, and have been for months. My hands are visibly twitching. I don’t see how they can say there’s nothing wrong.

The doctors are saying the fact it’s all over my body and not localised in one area rules out certain things like MS and MND. Apparently if it’s all over then it’s a systemic problem like a deficiency or something.

I know this is health anxiety talking, but I keep thinking maybe I do have something like MND that the doctors have failed to diagnose. I keep seeing stories about people being fobbed off then being diagnosed with MND a year later. The doctors say it can’t be MND because I don’t have weakness, but then other people are writing that their MND symptoms started with cramps and twitching, so who do I believe?

Sorry to hear that you're still worried.

I used to suffer from quite bad health anxiety and when I was anxious it was something really bad, I would say to myself - ok let's imagine it is ~insert terrifying diagnosis here~ , what would I do now? Most people would say they want to make the most of the life they have left and that really helped me.

There's also a great book called Overcoming Health Anxiety which is helpful.

I know I have health anxiety. But the stiff burning muscles and twitching are real. Something is causing it and the doctors are failing to diagnose and treat it. They’re just telling me to go away with a vague “take a multivitamin”.

I know and I completely understand. I've been suffering with the same for over 10 years and I've been told the same 🤷‍♀️ I think there's a lot of people in a very similar boat judging by the amount of members in the various Facebook groups I've joined.

@TinglyandCurious did you get any results? I’m freaking out because the pain and twitching is spreading around my body. The twitches are actually visible. Doctor won’t refer me to neurology because I don’t meet the criteria and have no weakness. The only referral I can get is mental health because they think it’s anxiety.

I’m literally going insane thinking this is something sinister. Making plans for how to kill myself so I don’t have to live with a terminal diagnosis. Tried to have myself committed to get help but the only thing the MH people were willing to do is talk me down and do deep breathing with me.

@Saramiah if you’re feeling suicidal then you need to go back to your GP and ask for a mental health referral. It’s not okay for you to have to feel this way and you need some mental health support. CBT is the evidence based treatment of choice for health anxiety.

I mean the above kindly as I’ve had health anxiety for many years. I totally get that your physical symptoms are real (and I’m not minimising them as they sound awful) but they don’t meet the criteria for MND any more than mine do. My GP was concerned about MS which is why I’m under neurology (no results as of yet but thank you for asking) but even it’s been confirmed I’m not showing any hard clinical signs for MS. Much more likely a compressed nerve coupled with excess worry.

"Within range" but are they top or bottom of the range and has the range changed

My B12 is 300, apparently anything over 190 is fine. It says the range is 190-660 so at 300 that puts me roughly in the middle?

Vit D is borderline low but I’m on supplements and it isn’t fixing the problem.

Can you afford to see neurology privately? I think you need to put your mind at rest. It’s unlikely you have MND but a definitive answer sounds like it could change your quality of life dramatically. It may be worth the money.

@Saramiah I'd put money on it being your Vit D. It takes a looong time to build up your levels and studies show your optimum levels should be way higher than the NhS threshold. Lower end iron can also cause similar symptoms.

The audiobook of Overcoming Health Anxiety is really, really good (make sure you get the one for the second edition). The book itself is excellent but the audiobook read by a human is even better.

I'd throw everything at the health anxiety, as probably the fastest way to get back some peace of mind. Even though it won't get rid of the original symptoms that were there before you were anxious, if it reduces the mental and physical effects caused by the HA (which can be so much more than you might think - genuine physical effects) it could make you feel much, much better, and seeing which symptoms are left after that will be useful. You're hyper tuned in to your body at the moment and that will be making everything worse.

Given the camping etc I might also push for antibiotics or other bacteria/parasite tests if they exist, but not in a rushed way & with the expectation from the start that they might never find the answer.

Treating the HA will help you to deliberately talk yourself out of catastrophising whenever you notice a bodily sensation, and into a more detached state of just observing and noting things. "oh, there are those twitches there, how annoying, oh well, I'll just make a note of it" rather than spiralling off into worst case scenarios. It might feel a bit like deciding to do nothing about the original symptoms for a while, but in fact might actually make it easier to eventually find it what's causing those original symptoms, or just to live with them if you never do find the cause.

The Bearable app is really good for tracking symptoms and patterns. Once you've noted something there, you don't need actually need to pay that much attention to it in the moment.

I'd be open with the GP about it too. You have two genuine medical problems: whatever was kicked off originally by the camping or a virus or whatever, and the HA that that triggered or made worse. You deserve treatment for both. Do consider getting that book, at least.