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 😩

What levels were your B12 & vitamin D?
There is a world of difference between ‘normal’ and optimal. I suffered horrendous bone pain and leg muscle twitching with only slightly under Vit D (49 and normal is 50, optimal above 70) that was marked as ‘satisfactory’.

my B12 at the lowest end possible gave me horrendous symptoms too. The lab report actually says ‘consider treatment if patient is symptomatic’ but the dr happily marked it normal, I objected and he agreed to try treatment, my symptoms and pain only went when I had b12 injections.

B12 was 270 (normal range 191-663). They gave me supplements regardless but it hasn’t solved the problem.

Vit D was 39 now 54 (normal range 50-175). I’ve had three months of supplements but it hasn’t solved the problem.

My Vit D has been lower than that previously and I didn’t have these symptoms. I started to get better before they even gave me any supplements so I don’t think that’s caused the improvement in my symptoms.

The doctor is confused by how the symptoms came on suddenly over the course of a couple of weeks, then started to improve without any treatment. If it was a vitamin deficiency it would be a long slow decline of gradually feeling worse. It wouldn’t be rapid onset then slow recovery.

Tbf I felt fine until I suddenly felt like there were hot pokers in my bones, my shoulders ached and my face/fingers went numb! Just because they expect a slow decline in most people, it doesn’t mean it’s like that for everyone.

How did they test magnesium? I’m understanding that it can still be low but look normal on a blood test but that a urine test for magnesium is more accurate.

Your ferritin is still pretty low, nice guidelines say to treat under 30 and, iirc, it needs to be above 70 for healthy hair growth. You’d likely feel miles better if you could get it into the 80+ range.

I know you can get a false negative result for the coeliac blood test, although I imagine they won’t refer for endoscopy & biopsy without very specific symptoms.

Can I ask how old you are? I’m just wonder if peri is a contributing some symptoms (pain, twitching, even bowel issues!) and confusing the cause of other symptoms.

I’m 44. The GP said the sudden onset of symptoms makes it unlikely to be peri. Also I have none of the more common peri symptoms. The pain was so bad I could barely walk, and they’ve never heard of anyone who can’t walk because of peri. Also I started to get better after a couple of weeks, and you don’t get better from peri.

Magnesium was a blood test, they won’t repeat it because it’s adequate. But they did give me magnesium supplements just in case and it didn’t help.

I am still taking iron and Vit D to get my numbers a bit higher. Even though they’re normal now they could still be improved. But the GP said it’s not causing my symptoms because I’ve had 3 months of supplements and seen no improvement. The numbers have gone up but I’m no better.

I do have coeliac, had it for 20 years. Never had problems before, I just avoid gluten. The GP tested me and gave me an endoscopy when these symptoms started - the coeliac is fully under control and they can’t see any damage in my stomach or any antibodies in my blood. So it’s not being caused by coeliac.

My bone panel has come back now. Perfect numbers. No idea what’s wrong 😩

Your iron should be closer to 100 as a menstruating female.

what was your magnesium level? It should be about 1 to be optimal.

normal doesn’t mean optimal. We need to see figures and ranges.

Please share your bone profile numbers as well.

Have they ruled out reactive arthritis that can follow on from salmonella and other infections?

If all the physical reasons for the pain have been discounted for the pain then consider remedial hypnosis to 'turn off' the pain response in the mind. It works.

Same here with the vitamin D. Mine came up only slightly low but I have felt horrendous, I am so fatigued that I am falling asleep at work and have to have a 3 hour nap when I get home at 4pm, horrendous muscle and joint pains, i am literally hobbling and waddling around as hips are stiff etc. Gp has started me on 3 months worth of high strength Vitamin D so really hoping this will help.

They said it’s not arthritis because my muscles are burning and twitching. Arthritis mostly affects the joints. Also my bloods aren’t showing any inflammation markers.

Here are all of my results. I’m desperate for a diagnosis because I’m in constant pain, but the GP says everything is normal. My muscles are constantly burning and twitching and my joints keep clicking but there’s literally nothing wrong with me.

Normal results:
Magnesium 0.84 (0.7-1.0)
Vit D 54 (50-175)
B12 279 (190-660)
Folate 8.2 (3.9-26.8)
Ferritin 22 (15-150)
Sodium 138 (133-145)
Potassium 4.3 (3.5-5.5)
Urea 5.4 (2.5-8)
Creatinine 76 (45-85)
Serum calcium 2.32 (2.2-2.6)
Inorganic phosphate 1.19 (0.8-1.5)
Alkaline phosphatase 53 (30-130)
Serum protein 73 (60-80)
Serum albumin 44 (35-50)
Serum bilirubin 8 (0-20)
Gamma-glutamyl transferase 14 (0-45)
Alamine amino transferase 8 (0-40)
TSH 1.04(0.3-4.5)
Serum CRP 1.4 (0-5)
White blood count 5.05 (4-11)
Red blood count 4.52 (3.8-5.8)
Haemoglobin 139 (115-165)
Haematocrit 0.410 (0.37-0.48)
Red blood cell distribution width 13 (12-15)
Mean cell volume 90.1 (80-102)
Mean cell haemoglobin 30.1 (27-32)
Platelet count 241 (150-450)
Neutrophil count 2.79 (1.8-7.5)
Lymphocyte count 1.66 (1.0-4.5)
Monocyte count 0.55 (0.2-1.2)
Eosinophil count 0.15 (0.04-0.4)
Basophil count 0.02 (0-0.2)
Nucleated red blood cell count 0.00
HBA1C 38 (should be under 42)
CA125 30 (should be under 35)
IgA < 1.0 (coeliac negative)
Cyclic citrullated peptide < 1.0 negative
Rheumatoid factor < 10.0 negative
Anti nuclear antibody negative

Abnormal results:
Erythrocyte sedimentation rate 20 (should be under 12)
eGFR 86 (should be 90-120)

These last two are out of whack but only slightly. They think improving my iron and Vit D levels might help. It doesn’t indicate anything specific. My borderline low iron and Vit D can be explained because I have coeliac and heavy periods.

They’re questioning whether it’s psychosomatic pain (ie all in my head). I’d accept that if it wasn’t so severe - I’ve never heard of anyone being in too much pain to walk just because of anxiety. Also anxiety symptoms come and go but my pain is constant. They made me have a 3 month course of anxiety counselling and the psychologist has concluded that I don’t have anxiety and it’s not causing my symptoms. They also did an abdominal ultrasound and found nothing unusual.

Psychosomatic pain isn't necessarily linked to anxiety. I recently worked with someone - ironically a hypnotherapist herself - who was having to sell one of her horses because of her ongoing pain and exhaustion. She wasn't anxious or depressed. It took just two sessions to turn off the pain.

When we sustain damage, or when we need to recover from damage, the subconscious triggers a pain response to make sure we don't make things worse (makes sense). But sometimes the message doesn't get through that the pain is no longer necessary and carries on sending redundant signals.

Thanks. For what it’s worth I don’t agree that it’s psychosomatic. There’s something physically wrong with me. I had severe diarrhoea for a couple of days and then this muscle pain and twitching gradually came on over the course of ten days or so.

Psychosomatic doesn't mean its any less real. It just means it's not a physical issue just how your brain is responding to it.

I have the same thing. 3 months. Started the same as well.

With twitching sore legs. Like elastic bands and pins and needles.

What is twitching and where? Is it a specific place each time?

Diarrhoea would tend to point towards an infection with maybe post viral fatigue?

Could it be a food intolerance, I had a lot of pain, tiredness and ibs symptoms, but it turned out to be gluten sensitivity. Gluten and dairy are the most common, and if it affects you they only way to tell is to completely eliminate them from your diet for two weeks, and if your symptoms improve, introduce one back in for a few days to see if it provokes your symptoms. Then repeat with the next.

hope whatever it is you get an answer soon, the not knowing what you can do is difficult.

Have you been around poorly kittens/cats recently? I had similar symptoms when I caught Giardiasis from a kitten which lasted about 6 weeks. Maybe see if the gp will take a stool sample and see if that shows anything.
hope you feel better soon

I thought parasite too. Sounds similar symptoms to my friend who had Giardiasis caught on holiday.

Fibromyalgia?

How about fibromyalgia or MS or similar. Both conditions can cause a wide range of symptoms and both can come and go

Is your pain equal on both sides. It does sound like fibromyalgia. It took 5 years for me to be diagnosed. It can cause digestive problems also.

Have a look at Pain Free You by Dan Buglio. He's on YouTube. He has had huge success with people who have chronic pain or unexplained chronic symptoms. It is based on the brain wrongly perceiving danger so keeps sending pain signals/other symptoms to warn you. It's like something happens (maybe a viral infection caused your diarrhoea) and the body heals physically (explaining your symptoms improving by themselves) but the brain has mistakenly got the impression that there is still something wrong so it keeps up the pain and symptoms as a warning system (pain is effectively just the brain's way of telling you something is wrong, that's its only purpose).

It doesn't make the pain any less real. Dan had crippling back pain for 13 years to the extent his entire body was completely crooked. He has lots of testimonies from people who have followed his method and recovered from chronic things like muscle twitches, pain, fibromyalgia, ME, CFS etc etc.

I completely get that you would be resistant to the idea of it being psychosomatic. But it doesnt make it any less real. It doesnt mean its all in your head. The symptoms are absolutely real and physical, but the cause can arise in the brain rather than the body. I was sceptical as well. But it worked for me with neurological symptoms and other issues as well.

Completely free. He has a group therapy programme you can pay for but he publishes free videos every day and there are loads and loads of his videos and people's testimonies on YouTube. He encourages people to use all the free resources, its not a scam and he's not after peoples money.

I have no connection with him by the way. My friend had chronic back pain and read Dr John Sarno's book on it (which is based on the same method) and went from being bedbound to working full time in a month. She then found Dan and recommended I look at his stuff as I was dealing with some weird neurological issues that the doctors could find no explanation for.