They can’t find anything wrong but I’m in pain

[Lumiodes]

I had a bout of diarrhoea followed by severe muscle pain and twitching. It got worse and worse for two weeks then started to get better, and over the past six months I’ve recovered perhaps 60% of normal. The doctors can’t find anything wrong. All of these tests are normal -

Iron (ferritin, haemoglobin, blood count etc)
Vit D
Vit B12 and folate
Calcium
Potassium
Magnesium
Thyroid
HBA1C (blood sugar)
Coeliac
Serum CRP (inflammation)
Anti nuclear antibody (autoimmune)
Rheumatoid factor
Cyclic citrullinated peptide (autoimmune)
CA125 (cancer)

My ESR is slightly high and my eGFR is slightly low but not enough to cause concern. My ferritin is 22 (normal is 15) and they think increasing my iron will help to address these two issues. But there’s nothing to explain my symptoms.

They’ve given me vitamin supplements but it’s making no difference to the pain and twitching. They’re saying there’s nothing left to test. I’m in perfect health. But my muscles are burning and twitching and I can’t walk for more than 30 minutes. Help 😩

Your ferritin is really low at 22. I've just had an iron infusion as mine was 5, went up to 30 but still feel grim. Normal is deemed 20-206 or something so you and I are both 'normal' but clearly not optimal, maybe something to chase? I had to go privately as NHS won't do.

@Muchcolderthanoflate I had iron infusions after I was diagnosed with coeliac disease, 4 over two weeks but they take a month or so to show, my ferritin went from 6 to 126, I felt like super woman, did you just have one? I'm considering private infusions, what was the cost?

It is over a decade since I worked in this field but high ESR has an association with other inflammatory markers, and MS. Given the transitory nature of some of the symptoms and the possibility of relapsing/remitting type, I’d be minded to attempt to rule this out sooner rather than later.

Yes only the one so no idea if it will make any difference, not sure how much it cost I'm afraid as it was through insurance.

Have you had your hormone levels tested??? Estrogen, progesterone etc.......

I've had something similar. Lots and lots of twitching everywhere. Was told I have Benign fasciculation syndrome. I was made to feel I was going mad but the twitches were very real....

Could be some sort of vitamin deficiency.

It would be interesting to see your parathyroid levels.

also. You arent ‘not ill’. You are ill and they just havent worked out the cause yet. Dont loose hope

Low Potassium? This can make you feel terrible

Hand muscles. Arms. Legs especially calves. Face muscles above lips. My abs twitched really badly for a while but that’s stopped now. I think it’s eased off a lot over the last few months. No it isn’t a specific place every time, so the GP says it’s some sort of systemic issue. Or anxiety.

I wasn’t that ill with diarrhoea. I had a nasty dose for maybe half a day, sweating and shaking. Felt a bit delicate for another day or so. Then I was fine. But my muscles started to twitch and hurt, and after a couple of weeks I could barely walk. Then it slowly got better but not 100%.

Checking back through my results, the high ESR was a couple of months before this issue began. So possibly not related.

My potassium has been checked, it’s normal.

As a last resort they tested me for Lyme and that’s negative too.

GP says no. I don’t have the symptoms. It doesn’t present as an acute illness that gets worse for two weeks then slowly gets better. It also doesn’t present all over the entire body at once. I have none of the hallmarks of those diseases. The GP wrote to the neurologist to say they couldn’t refer me because I didn’t meet the criteria, but could he advise, would he accept the referral if they slipped it through? Neurologist said no, if I was referred he would reject it because I don’t have the symptoms.

@CapaldiQueen thats puzzling. You had diarrhoea followed by muscle pain and twitching?

I’ve been very scared because twitching is associated with some awful diseases that cause a horrible death. I can’t help but worry. I don’t like not knowing what’s wrong, it’s distressing. The GP had said it could be some sort of post viral thing, she’s heard of Covid causing muscular problems.

I had similar years ago after a vaccination. Felt like death and had so much muscle twitching, pain and weakness. I was told it was likely "just" anxiety but I had no history or other symptoms.
I took lots of vitamins and supplements, did lots of relaxation and complementary therapies and it gradually faded away but I have no idea what, if anything, helped it

I am a Coeliac and for 10 years I remained undiagnosed, that wasn't for want of trying to explain to GP'and consultants how ill I was. I had all the symptoms you describe. I have never recovered fully I still have many symptoms even though I am so careful with gluten ingestion. I have resigned myself to never being fully well. Coeliac disease has a myriad of symptoms, and that's what makes it hard to diagnose many Coeliacs report that their symptoms continue despite a diagnosis.

Muscle twitching and pain can also be a symptom of ME/CFS and it can come on VERY suddenly and with crippling pain.

I have coeliac. Had it for nearly 20 years, never been ill. The first thing the GP did was send me to the gastroenterologist to see if this was coeliac playing up. But blood tests and endoscopy indicate my coeliac is fully under control. It’s not being caused by coeliac. I’m at my wits end worrying about what’s causing it.

Just wanted to say don’t be fobbed off with gp trying to say pain is in your mind.
I have had a serious misdiagnosis from a gp with this approach.
Keep on until you have a answer and don’t be afraid to get a second opinion.

They said no. Six different doctors and about three nurses. The neurologist won’t even accept a referral for me because he says it’s definitely not MS etc.

I'd try vitamin D and magnesium, it's worked wonders on my pain and twitches. I feel so much better since taking it.

I’ve had three months of vitamin D, B, iron and magnesium. I’m not cured. My numbers are in the normal range. The GP said this is obviously not the cause. I’m absolutely at a loss 😭

@Eyesopenwideawake do you do consultations remotely?

I have joint clicking and stinging pains in my feet in particular but they can come and go all over the place. I've recently been diagnosed with hypermobility (and possibly fibromyalgia), which can also cause digestive problems and can be associated with coeliac. Is that something you've considered?

No, they didn’t accept the referral. You can’t say that they have said it definitely isn’t MS and there is also a correlation with MS and celiac.

Id ask for a private neurology appointment.

So the twitching is known medically as tremor.

I have tremor. I have a neurological condition that means that my nerves sometimes don't work. So I get pain, burning pain, and tremors. I also lose motor control, and my sensation is pretty dodgy.

Realistically with your symptoms you need to see a neurologist as while it might not be MS (or at least it isn't presenting like MS) there are a fuckload of things that can be wrong with your nervous system that are not MS and only the neurologist can tell what they are.

If you can afford to go private I would.

With the pain, if it is nerve pain (and it does sound like it) then you may find amytriptyline or similar SSRI's help, that is the standard treatment.

There are medications that reduce tremor. I don't take them because the side effects are worse than my tremors.