What causes all these symptoms?!

[Mumma02]

Over 3 years and still no definite answers and nobody cares! What would you be leaning towards with all these symptoms?

Fatigue
Breathlessness
Sudden onset of pre syncope that went away
POTS that comes and goes
Horrible achey arms
Sudden onset of carpal tunnel which went away on it's own 2 years ago
Headaches
Tremors
Twitches
Ectopic beats
Burning feet that come and go
Limb weakness
Dizziness
Brain fog
Feeling spaced out
Metallic taste in mouth
Thumping in ear
Shaking/blurry vision
Pins and needles
Shakey legs
Always cold but sometimes flush and sweat too much
Hot face with red cheeks comes and goes
Adrenaline dumps
Anxiety
Head rushes/waves?
Tachycardia
Low blood pressure
Probable small fiber neuropathy without a cause
Sore/achey/stiff neck and base of skull
Sometimes nausea

All symptoms come and go. Sometimes I will have a few symptoms throughout the day, sometimes (rarely now though), none.

I feel like shit.

Some of the symptoms, such as those I’ve picked out below, could be low Vitamin B12 and/or low vitamin D and low Ferritin. You can still suffer many symptoms when GP’s class you as ‘normal’ when in the lower end of the normal range. Maybe ask for a print out of any blood test results so you can see what you have had tested and where in the reference range your levels sit. Eg ‘normal’ for vitamin D is 50 but optimal for bone protection is over 75. A Dr could mark you as satisfactory at 46! Ferritin has a normal range at our local lab as between 20-300. You could feel pretty shocking at 20 but amazing at 200, Iron deficiency can lead to pulsation tinnitus, where you can hear your pulse thumping in your ears. Nice guidelines say Ferritin below 30 should be treated but my GP actually took prescription iron off my repeats when my ferritin got to 23! Our local lab also prints ‘consider treatment if patient is symptomatic’ if B12 levels are the low end of normal which is 150 but the range of normal is 150-nearly 1,000 -can’t remember exactly off the top of my head- but low B12 can cause a metallic taste in your mouth. Have you had thyroid checked? That can cause a few issues below too. How about HBA1C?
It could be none of the above of course. Is your diet good? Are you underweight? SeemS PoTS is common in underweight people, although people can be overweight and still be suffering from malnutrition if their diet is poor and limited and that could cause a lot of the symptoms.
I’m sorry you are coming across clinicians who don’t care, I’m similar tbh and have, or have had, many similar symptoms, some of which -but not all- have improved a little by getting B12 injections, high strength Vitamin D prescription & occasionally having my ferritin above 30.

I hope you get some answers soon. Sadly I think we just get labelled as hypochondriac because they can’t believe we feel so bad when they think we are ‘normal’.

Fatigue
Breathlessness
Horrible achey arms
Headaches
Tremors
Twitches
Ectopic beats
Burning feet that come and go
Limb weakness
Dizziness
Brain fog
Feeling spaced out
Metallic taste in mouth
Thumping in ear
Pins and needles
Shakey legs
Always cold but sometimes flush and sweat too much
Hot face with red cheeks comes and goes
Anxiety
Tachycardia

No idea but my daughter 16 is being investigated for POTS currently and she has many of the same symptoms as you

@MEFibroHell I'm guessing from your name what you ended up being diagnosed with! Did they ever investigate as to why you have it? I really think I'm just going to get labelled with this. My ferritin has never been above 30 as far back as the first time it was tested in 2016. Lowest it's been is 9 and highest 30 and that's WITH oral supps. Just coming to the end of a horrifically heavy period though so might be adding to why I feel so ill. Doesn't explain total autonomic dysfunction, vibrating legs/neuropathy though. I'm sick of feeling so sick.

@userab hope she finds some relief soon.

Following as I have so many of these symptoms too. Add in paroxymal atrial fibrillation and constant pulsatile tinnitus.
All recent bloods ok except borderline Vitamin D. Recent tilt table test negative. MRI negative except for incidental finding of pituitary cyst.
At a loss.

@cptartapp did they say if the pituitary cyst would cause any problems? I've even looked down the Sheehan's route as I lost over a litre of blood giving birth to my son and never felt 100% normal since then. I miss my old life so much.

Pituartry issues though can cause hypothyroidism -usually happens with a lower than expected free T4 but normal TSH- hence why I'm seeing GP next week - that would give you hypothyroid symptoms too I believe.

They said it was completely unrelated and just needs annual monitoring.
I had a horrendous summer with persistent lightheadedness out the blue. So bad I had three months off work. ENT referred me to a balance physio who ultimately diagnosed bilateral vestibular hypofunction. That was within weeks of the AF. Related?
Perfectly fit and well several months ago.

@cptartapp I totally sympathise- similar issues here and lightheaded ness for me plus whopping headaches was the initial problem- followed shortly by weird vibrating and buzzing in legs and eyes feeling wobbly occasionally - I have had every test except MRI (am now going to pay) - seen neurologist. If nothing is found I can only think it's long covid it vaccine as it came on fairly shortly after a bout of covid and shortly after my 4th vaccine.

I ended up going private through DH private medical insurance for ENT, Cardiology and Endocrinology.
Snap re the vaccine. Hospitalised three days after my fourth dose.

Thyroid would be my first instinct. Look up thyroid patient advocacy - tpauk.com and see if you can find out anything there.

Yes I have the above diagnosis, they are also considered PoTS and I’m under cardiology BUT I can’t believe it’s possible to feel so awful whilst they continue to say my blood tests are ‘normal’.
Thing such as the pins and needles, the leg twitching, jumping at night, pounding in my ears etc have improved with B12 injections, Vitamin D, Iron and magnesium. the brain fog is a little better these days too., as is the breathlessness. The cold but flushing and sweating too much has improved with my thyroxine dose being altered and starting HRT, same -to a certain extent-for the anxiety. The tachycardia is on & off & the headaches have improved a bit. The pain & exhaustion is a killer though.

I'm sick of feeling so sick I hear ya!

@Crikeyalmighty so the majority of my symptoms including temp dysregulation, adrenaline dumps, internal vibrations plus more came on directly after my booster vaccine in Jan 2022! I had 6 weeks off work as a result. Has anyone ever connected the dots and explained anything to you about it? Did you have Moderna by any chance?

For everyone saying thyroid...I wish it was this so I could at least attempt to treat it. TSH hovers around 1.3-1.8 at the highest and T4 seems fine. Never had the other things tested.

@MEFibroHell I really want to try B12 injections but I'm too scared to order off the internet and inject something that might be dodgy. No way my GP would give them to be based on my last level which was 429.

@Mumma02 - you know what concerns me is they were busy asking if any of us were allergic to xxx (component in vaccine)how would we know?? (I had Pfizer every time as we were living in Copenhagen at that time) Most of us haven't had vaccines for years and certainly didn't ask what was in them when we had them years and yearsago. The annoying thing is that I did have the buzzy leg think a couple of times after the3rd vaccine but it stopped so I didn't link it in my head. I have no idea if it's all connected, but if not it's one hell of a coincidence timing wise

@Crikeyalmighty I had covid for a second time over Christmas and feel worse than ever so I don't know if it's all linked. My initital symptoms did start pre covid and vaccine though so I can't pin everything on this - but I don't think it's helped. Don't know where/who to turn to for relief.

Thyroid?

@Mumma02 I do know how you feel- I have2 'ok' days and then several awful days - like you I'm not sure any longer how to get to the bottom of it - which is why I'm going to pay for an MRI- I've had just about everything else -

I have a lot of the same going on here (including idiopathic SFN which I had to google so weird to find someone else with it lol). I am at least old and have other chronic conditions so am tired of all the tests for no benefit to me. Good luck to the rest of you

You could be overloaded with oxalates. Watch Sally K Norton videos on YouTube. She was polysymptomatic like that before she eliminated oxalic foods and started to clear herself of the build up.

@allypally999 sorry to hear this. Have you been diagnosed and did they attempt to find a cause? My biggest bug bear is when all these doctors will dish out pills but won't spend too much time or effort on identifying the cause which I would much rather treat.

@CaveatmTOR I haven't heard of this so will look in to it.

I have a lot of similar symptoms and am currently going through an FND diagnosis.

@MrsWidgerysLodger all I hear about this is that they diagnose you with it when they literally don't know what the problem is and stop investigating once they've labelled you with it. Similar to fibro/m.e so I hope they've looked at everything!

Following as someone close to me is going through this. All of these symptoms and although a chronically low b12 & folate was discovered, treating these hasn't totally alleviated (she is injecting b12 bought privately from Germany every other day. Symptoms have improved but not gone).

I suggested to her and I'll suggest to you a coeliac screen. You don't always have to have the dramatic digestive issues associated. It can present only with autoimmune / inflammatory symptoms and chronically low vitamins from damage to the gut. Both would result in the symptoms you describe. Worth a try?

@hotfairballoon thank you but I had the test a couple of years ago and it was negative! That's a shame she is not improving with treatment. Although I heard it can take a long time on B12 for symptoms to reverse if a lot of damage has been done.

@Mumma02 there are lots of beauty salons that do injectables now and many of them do B12.
I do have B12 on prescription but I also it from a pharmacy in Germany because the Dr won’t give them as early as I’d like, it’s sold over the counter in Germany. It arrived within 2 days, was £15 for 10 & I am very familiar with injections, although the stuff really stings so it’s quite a challenge!

You are right in that once you have a label they give up looking for answers 😕