Numbness, pain, burning, twitching - terrified

[Sirian]

A couple of months ago I had a period where all my muscles seized up. I had twitching, burning sensations, numbness. My legs were so painful I could barely walk. The GP did loads of tests which were all clear. Five different doctors said they aren’t concerned and it isn’t MS or anything sinister, it’s probably viral, maybe Covid related. They also said I was very anxious and it could be related to that.

I rested and started doing meditation. Over the course of several weeks the symptoms improved but didn’t go away completely. The last GP I saw said my iron and Vit D were borderline low so gave me supplements which I’ve been taking for a month. I’m still not cured.

The last 48 hours I’ve become more achy again. My muscles hurt. I’m having the same numbness and burning as before. The twitching has got worse. I can’t see any obvious trigger for this. But it’s made me absolutely terrified again. I don’t know what else to do.

The GP surgery won’t entertain me because five of them have already told me it’s nothing sinister and they’re not concerned. But I’m not convinced. Healthy people don’t have twitching and numbness and burning pain. I’m worried it’s something serious and they’ve just failed to diagnose me.

It can be, as the thing about nerves is once damaged they can repair themselves but it takes a long time and they can give weird symptoms like twitching while they do. I've also found at times I'm sensitive to alcohol and having a drink can cause the twitching to worsen but at other times it's fine and doesn't. I think it tends to be when I'm stressed or ill with an infection or something, as that can mess with your immune system and if you have coeliac you already have an immune related disorder.

Not feeling as bad today. I was worried I was going to have a full relapse to the point where I could barely walk. Still achy and twitching muscles are doing my head in. Bloody sick of the whole thing ☹️

Not a Dr but have you upped your magnesium? I'm gluten free with similar twitching pain magnesium helps...of course it also gives me some gut issues (this latest magnesium pill does) but at least I'm not twitching (or constipated)

They did say it could be magnesium. But my magnesium level is 0.83 mmol/l (normal is 0.7 - 1.0). So apparently that’s not the cause of my problems.

You may not have been ingesting gluten but it's found in quite a few things. My friend has coeliac disease and cannot have contact with many washing-up liquids.

They checked my blood and it’s not showing any response to gluten. So they don’t think I’m accidentally ingesting gluten and making myself ill. If that was the case it would show up on my blood tests.

I did eat a BIG dose of gluten due to restaurant error about four weeks before my symptoms started, but they said there was too big of a gap between the incident and the onset of symptoms for them to be related.

I tried to go out tonight. I was on my feet for about an hour and a half, and I had to keep sitting down, perching on tables, at one point I was so desperate I sat on the stairs. Then I gave up and went home.

My muscles are twitching, I have pins and needles sensations and muscular pain, and I’ve gone from being able to work a full day on my feet to being unable to stand for more than 30 minutes.

All I’m getting from multiple GPs is that they can’t match my symptoms to any specific disease, they think it’s anxiety and possibly low iron and Vit D. But I’ve had supplements for a month and I haven’t improved. I’m terrified that I have MS or Parkinson’s or something and I’m going to deteriorate and die and leave my kids.

Have you looked at B6 toxicity? My GP says issues with low ALP (in the liver enzymes) and B6 can be more common in coeliac patients. It is very frightening and you feel you must have something awful wrong or that you're losing your mind.

That is how I am with Fibro. I can't stand for long, or walk. If I do anything my muscles are screaming at me, burning and twitching. It's awful. If that is what you have then you need to learn how to pace yourself.

Try and sort out your three known issues and while you are doing that start living life in the slow lane. If you usually go out 4 nights a week, reduce it to two or one. Alternate sitting, standing, moving and do 30 minutes max of each. But anxiety/stress can make Fibro a lot worse so definitely work on reducing that (and yes, I know that's difficult, I'm still learning).

EDIT - ask for a Rheumatology referral. If you are thinking MS then a MRI scan(?)* should be done (that's how ms was ruled out for me)

*it was so long ago I cant remember if it was mri or cat, but it checks the sheath covering your nerves I believe

Hi I know this an old post and I’ve tried on other message boards but I have all your symptoms , what did they diagnose you with in the end or did it improve x

It is so frustrating when doctors do not know - that is fine in itself - not their fault - can't know everything and some things are not simple. But instead of being sympathetic and understanding that you need some proper diagnosis and taking the proper steps, they just go into dismissive mode.

Seeing a neurologist would help you and give you some definitive way forward. Can you afford a private appointment?

The other day I saw GP with strange numbness/tingling/altered sensations in both legs. He did all the neuro examinations and declared that it was not a problem with my back (have had previous surgery) and it was probably one of the drugs I am on - just been put on a raft of new drugs after a cardiac artery stent inserted. He had no idea which one it might be and clearly had no intention of trying to find out - just sent me on my way to get on with it.

I have had a lot of chest pain since the stent was inserted and the docs do not know the cause - which could be trivial or life-threatening. I asked the cardiologist what I should do in the middle of the night at home on my own with chest pain - he suggested I should make a judgement as to whether it was cardiac and dial 999 if I thought it was - how the hell do I know?!

I do get very tired of this dismissive attitude to anything that does not have a simple answer or fit the NICE algorithm. The patient just goes away having to continue to deal with the problem unaided.

My late OH was a GP and thorough investigation and diagnosis was basically a given.

I am sorry you are having to battle with all this.

Hello Gina. I did see a neurologist and she was unable to identify an exact cause but did reassure me that it’s nothing dangerous and not any of the well known degenerative diseases. Anxiety makes the symptoms worse but the neurologist felt it wasn’t caused solely by anxiety. She said there is something going on but there are many possible causes and we might never find out exactly what, just be reassured that it’s benign. She advised that my condition would improve with time and I should try to reduce my anxiety.

im so glad I could of wrote your post myself - I got twitching and burning feet painful feet and ankle , I’ve been crying for weeks , now it’s given me terrible anxiety! Unsure weather to go private x x bloods clear x

Gina has your doctor done a neurological examination where they ask you to push and pull with your arms and legs, march on the spot with your eyes closed, touch your nose then touch their finger, cross your arms over your chest and close your eyes, etc. I was told the results of this would be abnormal if my problem was neurological. There are lots of possible causes, mostly benign. But your doctor needs to investigate.