AIBU to say this type of feeling unwell can be a bottomless pit

[Flippingo]

Basically, I always feel uncomfortable or shit in some way.
eb. my bp is up and down a lot, and I feel dizzy standing still for any reason.
I dread having breakfast because almost everything makes me have palpitations and I feel like lying down to recover. Fast metabolism - I am slim and get headache and blood sugar crash if I don't eat every 4 hours or so.

I do have some things going on with my arteries and collagen (something called fibromuscular dysplasia) and hypermobility syndrome. But the specialists in these areas can't really help, they just screen and look out for life threatening developments. Which of course is done regularly, but day to day ...... its hard.

I read the Everyday Ella book who had symptoms similar to mine - but her recipes are freaking expensive and I have 2 children, a husband and a dog to care for and just don't have time for it all.

AIBU that going down a route of seeing a nutritionist or holistic wellness person would be a bottomless pit of money? I did it once - an expensive consultation and 100s of supplements and vitamins sold to me - not sure I noticed a difference. Lots of friends recommend an 'amazing person' who worked out it was this or that and job done.

I'm despairing sometimes of having a life so interrupted by this

That's unnecessary @Kingoftheroad - don't comment on a thread if you're only going to share nasty aspersions.

@Flippingo I do think this kind of thing is what you need to be proactive about and find your own ways to make improvements, because doctors are generally rubbish and do just want to get you off their books as quickly as possible. I can't help with your specific symptoms but my MIL had similar ongoing chronic issues that didn't have a 'route' cause, and it took her a long time to find a way to make life liveable. I do think there's a string chronic illness community in some online spaces now (TikTok, reddit) of people sharing what worked for them specifically, you could look into that. I would try one thing at a a time for maybe a month at a time, so you can tell if it's working and you won't get too burned out/things won't be too expensive. I would recommend looking at your diet first, as that really can so often be the cause of problems. You don't have to follow the Ella recipes ingredient for ingredient, but maybe find ways to make them work for your schedule, or look online for people who have made them more accessible, as I'm sure there will be some. I do think the internet is going to be your friend with this. And I do also think you'll need to persevere with changes, not just try for a few days and dismiss if they don't immediately work.

Sorry I didn't have anything more useful to say but the first reply was so nasty I didn't want to read and run!

I'm appalled at 'malingerer's dream disease', but I guess it's ignorance + compassion fatigue. Maybe when you don't know how to help a patient it's easier to blame and dismiss them. Sheesh.

OP, you're right that seeking help can be expensive and you can have some false starts. But if you don't nothing's going to change. Are your friends all recommending the same amazing person? What are their qualifications and their methods? I'd be looking for someone who works off testing as well as history eg a functional dr. Some high-level nutritionists do work this way too.

BTW, my palpitations after eating made sense after I was diagnosed with MCAS (mast cell activation syndrome) and they went away in a couple of days once I changed my diet accordingly (low histamine diet) and started a couple of supplements. It's common that people with MCAS also have EDS and sometimes POTS - maybe looking into these might help? EDS alone might explain everything. (Disclaimer: am not a doctor!)

Good luck.

I too am going to suggest EDS and thus POTS. I hadn't clocked MCAS as a third, but yes, that is a distinct possibility.

OP ignore the dreadful post from 'Kingoftheroad' they are talking rot.

Thanks for the replies. Yes I've been assessed for eds - I qualify for the joint hypermobility type bit it's renamed now as begnin joint hypermobility syndrome.

It's not all malingering as the medical tests show - angioplasty on narriwed renal artery, severe pre-eclampsia in pregnancy, labile bp, I actually had a non STEMI heart attack in 2017 and spent 9 days in hospital.

The root cause probably is there and its likely vascular. But there isn't much to treat it all just watch and wait. Except working out with lifestyle what feels better or worse.

Perhaps another dietician would help. The person friends recommend is woo woo and gives you magic water (infused with electrons or something....)

Perhaps another dietician would help. The person friends recommend is woo woo and gives you magic water (infused with electrons or something....)

Make sure you see a qualified dietician not a nutritionist. However, if you mean electrolytes then I can see how they might help :)

I've not heard of fibromuscular dysplasia before I'm guessing you'll be under the care of a cardiologist? Whichever specialism your consultant belongs to, I'd request an appointment with them to discuss your symptoms and how they can be managed better / improved. The dizziness and palpitations are presumably down to that?

GPs probably say the malingering thing because they aren't specialising in much, and I'd never bother going to mine for it all

Ugh I did have paragraphs in that! Trying again:

Sorry, I realise you said the specialists don't seem to help but I'd push back. Is there a nursing team attached to the specialism? With chronic conditions it's often the nurses who can help the most and some specialisms have dedicated nursing teams for this purpose - it's also often easier to speak to them than it is a doctor!

I'd push to speak to medical practitioners who specialise / work with eds (or hypermobility syndrome) and those who are attached to cardiology because if there isn't a dedicated team then you might need to take a multi disciplinary approach.

Re deliciously Ella...been a long time since I looked at her books, but with the benefits of recent scientific and medical research, I'd suggests much of her success came down to the removal of UPFs from her diet. Obviously, great new book just published about this! Adjusting your diet to minimise ultra processed foods and focus on one that's healthy, lots of good fats and protein and with the correct balance of salts for you, is likely to be much more useful than a nutritionist.

As someone with different chronic health conditions, I'd also say don't be too impatient for results. Your body might need a bit longer to rest and recover than 'normal' people.

Consistency really is key, so focus on making small changes that collectively make a difference rather than big, sweeping This Will Change Things. I'm very much guessing because I don't anything about your conditions, but I suppose anything that can help stabilise your BP will help. Perhaps building in regular mini rest breaks during your day will help to manage the dizziness, even if they're just 5 minutes long.

Because of your dizziness and palpitations, you might find breath work helps to manage them as it has a direct impact on heart rate...Some really useful free apps that take you through guided breathing exercises. Download a few and see which ones you like best.

Yea I have a cardiologist. Seen an endocrinologist too.

It's just weird that food always triggers me feeling worse, but perhaps it's to do with blood flow and digestion.

Electrolytes is probably it

Breath work would be a good call too.

I agree with what PP said about Delicious Ella - most of it is about eating whole foods in their original state. It doesn't have to be fancy. Can you gradually remove all ultra processed foods, and move towards more whole foods like more veg, fruit, nuts, seeds etc. Have you looked at doing the Zoe app which analyses your own gut biome then recommends foods that will benefit you? That's run by Imperial College so has a proper scientific evidence base.

@Peony654 good point about Zoe, they also have a brilliant podcast that's worth listening to, am sure the op will find something relevant in the episodes

unfortunately no easy answers OP. nutritionists and holistic therapists are basically scam artists out to get your money. and magic water infused with electrons made me fall out of my bed laughing - everything around us is made with electrons... protons... neutrons. there is no water without electrons. dietician might be able to help - and you might consider the FODMAP diet which involves cutting out most foods and reintroducing foods one by one to see if any are causing the symptoms. but that's pretty intense and should only be tried with dietician involvement.
if you have vascular issues that does explain the dizziness and palpitations. are you anything eg. beta blockers for symptom control?

the zoe app has no statistically significant results to suggest it is of benefit and the Ella lady is just another scam artist getting rich off other people's insecurities! nothing wrong with eating healthy/whole foods as much as you can, but not to the extent where its causing you undue stress. unfortunately social media is full of quacks.
I really feel for you, it must be so difficult. hope you find some ways to improve things

Have you had iron/ferritin, B12, potassium and magnesium checked and confirmed all are well within range?