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.

Ask for a neurology referral if you haven't seen a neurologist already.

Do you have any kind of diagnosis, even a working one?

Anxiety. Borderline low iron and Vit D. Five different doctors have insisted they’re not concerned and the symptoms don’t point to any specific illness.

As if anxiety would cause those symptoms

As a long time severe anxiety sufferer. Anxiety most definitely can cause these symptoms. However I had months and months of similar symptoms of yourself. I've had all kinds of tests, long story short I actually have fibromyalgia and have been newly diagnosed. Which is consistent with these symptoms. It took me a long time to get diagnosed. Look it up and see if your symptoms fit. You will not get a neurology referral until other causes have been ruled out. I had to be tested for Rheumatoid arthritis, thyroid, all the standard bloods and hormones. I'm still not convinced that's actually what I have but I suppose I just have to learn to trust what the doctors say.

Bloody GPs.

Try to push for a neurology referral.

I have nerve damage (in my case due to an accident) and the burning/twitching/pain is very similar to what I experience.

There are a lot of possible things that could be upsetting the nerves though so you do really need to see a neurologist.

Standard first line treatment is with SSRI's such amytriptyline or duloxetine which effectively "turn down" the nerves and help reduce pain/burning etc.

Your GP may be prepared to prescribe them before you see the neurologist.

They said there’s nothing that would warrant a neurology referral. I got five different opinions, one of which was a locum who doesn’t normally work there, and another was a doctor at A&E. Five doctors have independently told me there’s no obvious cause for these symptoms and they don’t indicate anything sinister, nor do they warrant neurological tests.

I admit I am anxious. But I think the symptoms are causing the anxiety, not the other way around.

Are they giving you any treatment even if they won't refer you?

The pain alone should get you a pain clinic referral.

They gave me iron and Vit D and told me to rest and relax, try meditation etc.

There is actually a lot they can tell from the neurological exercises they do in a gp office, what each tells them may not be evident to you - particularly with regard to twitches. Ask for them to explain these fully, what each demonstrates and WHY they're not concerned, as it doesn't sound as if they have done so already. It might be entirely reassuring.

Ok.

The NICE (National institute for clinical excellence) issues guidelines for GPs that are best practice.

They have issued one for chronic pain (which technically is pain that lasts more than three months).

The guidance is here:

www.nice.org.uk/guidance/ng193/chapter/Recommendations

In particular note item 1.2.7 where they suggest use of anti-depressants to help control the pain, this is not because you are depressed but because in some people they help control the pain.

Ask to be referred to Rheumatology. I had similar symptoms (with exhaustion) and ended up being diagnosed with Fibromyalgia. It is now classed as an auto immune condition and where there is one there's usually another waiting to be found.

EDIT - Fibro flare ups have the muscle twitching, almost like electric shocks. I have been known to throw mugs of tea across the room due to them.

I think muscles seizing up can be something to do with dopamine inhibition. I don’t understand why your GP is dismissing you. They aren’t a specialist in anything

I had the same. Though I didn't have RA. But was diagnosed with fibromyalgia based on excluding any other autoimmune conditions.

For what it's worth, I'm sorry OP.

I still remember the doctor who said to me "ok, we're discharging you" and I was like " but I can't walk and I'm in pain" and he just shrugged.

I had to go private to get someone who would treat me and I had major physical trauma caused by an accident.

The GP's these days are under a massive amount of pressure not to prescribe painkillers, and if you are clear of diseases they can treat then there isn't much they can do and they mostly just want you to go away.

FWIW my private neurologist charges 175 per appointment and actually talks to you.

I have MS. I was tested for B12 levels before they looked into my twitching and weird numb feelings.

I suffer burning feelings over previous injury sites.

Low iron. This needs sorting. Ask for a ferritin test. I've recently started getting restless legs so bad I can't sleep. I was getting suicidal. The lovely people on the RL forum that I found on the RLS site said I should get a ferritin test as it's the component that crosses the blood-brain barrier.

Doctor was reluctant as my FBC a few months ago was okay. However, I got tested and am on the lowest test point. I'm now on iron tablets but don't do well on them so waiting for an infusion. Hopefully.

Good luck.

Yes they did the neurological exercises in the GP office multiple times, as well as every possible blood test and sent me for an abdominal ultrasound. They said I’m perfectly healthy, but I am very depressed and anxious, and borderline low iron and Vit D.

I’ve been on the waiting list for autism and ADHD assessment for nearly two years, and I’ve been trying to access counselling on the NHS for the past year without success. I’m very isolated and generally very unhappy. I’ve struggled with depression for 30 years. They think this is more likely the cause of my symptoms, or possibly viral.

All I’m getting from my parents and DH is “You’ve seen five doctors and had dozens of tests, you’ve been repeatedly told there’s nothing seriously wrong with you so stop being ridiculous. We can’t cope with this behaviour any more” (because I keep saying I’m in pain and scared and crying).

If you are in pain you are clearly not perfectly healthy.

I'm sorry your parents and DH are not being supportive.

There are any number of possibilities for what you might have, most of which do not have blood tests and some of which are serious.

You might have fibromyalgia as some other previous posters have suggested.

You might have neuralgia (nerve pain).

You might have any number of pain syndromes.

The nhs page on chronic pain lists a number of charities that it might help you to speak to and try and get some support.

It isn't unusual for GP's to dismiss patients experiencing pain but I'm sorry you have to go through this.

Sorry - the page is here

www.nhs.uk/live-well/pain/how-to-get-nhs-help-for-your-pain/

As others have said, it could be fibromyalgia, especially if you are in pain too. I had similar symptoms, particularly in the early days of developing the condition after an injury and extreme stress, both caused by work. There are online symptom tests, this was really eye opening for me to realise how many things I would have never have connected had started in the same time period. Doctors were keen to fob off but did eventually refer to rheumatology. I was also prescribed amityptaline which really helped the nerve symptoms.

Please you have to fight for your self.

On the 13th January I was told by nhs physio in my county I had a virus. Nothing really was wrong.

A week later in A&E (which was the only pathway my back pain would take me down sadly I know that now) 2 doctors later, arrangements were being in made to go through an MRI. My legs would just go on me or shake, I walked like I was a drunk, fine motor skills were going, I was peeing myself and there was numbness.

The second day in hospital was scary to bring a fork near my face to eat I thought I was going through epilepsy again (which I’d only suffered as a child) and if so wanted to die.

I was operated on the 27th of January this year (2 weeks after being told ah it is just a virus by people who could have ordered a scan but did not) and for the most it resolved my scary symptoms, I thank a private chiropractor who refused to touch me, they genuinely saved me.

Never too early to talk about cervical myelopathy in my opinion.

I had all if thr symptoms you listed, god the numbness and twitching was awful. It turned out I have coeliac disease, in some people it causes neurological symptoms. A few weeks/months after cutting out gluten I was good as new. Worth looking into as it's actually very common.

@Bloodyel I actually already have coeliac. I was badly glutened a month before these symptoms occurred but the doctors said I would have got over it by then and the time gap was too long for the symptoms to be caused by the gluten incident.

How long have you been gf? It can take a long time for the symptoms to resolve. For me, even though the symptoms got better wrinkly I still had some twitching for months that came and went, sometimes it's a sign the nerves are repairing themselves. Are you 100% sure there isn't gluten anywhere in your diet? It can hide sometimes in sauces and seasonings etc

@Bloodyel I’ve been gluten free for about 15 years. I’m fairly certain I’m not eating gluten. Doctor checked my blood to see if that was the issue but my coeliac antibodies are very low, if I was eating gluten they’d be elevated. I did wonder if this really bad gluten incident had kicked off some sort of neuropathy but the doctors said unlikely given there was a gap of a month between the gluten incident and the onset of symptoms.