Dizziness in ME

In answer to Linda’s letter at the bottom of this page.

Hi Linda,
Good to hear from you!
In my experience of ME, you can feel dizzy if you stand up, from lying or sitting, too quickly. The same if you’ve been standing for a while – this is a typical ME symptom called Orthostatic Intolerance. Check if you go very pale or even grey when this happens.
Check that you are eating as little sugary food and drink as you can. Eat slow-energy release foods to stop the dizziness and weakness. Eat something every 3 hours and drink lots of water. Sugary foods affect anyone’s blood sugar levels but with ME you have to keep your blood sugar level as steady as possible to help your body produce energy as constantly as possible.
When we’re feeling low, physically and emotionally, we all crave sweet things to perk us up but in a short while, those empty calories run out and you’re left craving all over again. Empty sugars are addictive!
If you need to sit in the shower then you must. This is VERY common in ME and in fact, “whether you find it especially tiring and painful when washing your hair” is one of the diagnostic questions we ask.
Get what my daughter had – I bought a very cheap kid’s plastic stool from IKEA which really helped.

Our £3 IKEA shower stool

Our £3 IKEA shower stool

If you feel dizzy when you’re outdoors try to have a friend with you, drink plenty of water, don’t rush, sit down regularly, don’t carry a heavy load and basically listen to your body.
In the UK, I would be advising you on how to apply for a Blue Badge (Disabled Parking Permit) and all sorts of helpful, practical tips on how to conserve, save and optimise your energy. I had 12 years, 24/7 experience with my daughter.
I’m not medically qualified so if you suspect or are worried that the dizziness might not be ME-related, then please go to see your doctor. It will ease your mind to be able to eliminate anything else which your doctor tests for.
Fretting and worrying are huge ME symptoms, especially during a bad spell, and they use up ALL your energy so you’ve nothing left for doing anything else at all that day (or for many days).
But of course there are things you absolutely have to do like eating, walking up stairs, dressing or undressing, talking etc etc. but even these simple examples use up energy which you don’t have. Your energy “bank balance” is in the red!!
It’s not hard to see why stress is going to bring out your worst ME symptoms as your body tries to cope with the energy demands you keep making.
At times, these demands may be pretty basic compared to how a healthy person, or even you on a good day, manages to achieve without even a thought.
It sounds like this is a bad spell or relapse whether the dizziness is new or if it’s returned. Bad spells are part of ME but they’re always followed by better days!
In ME when things are stable, that’s good news. It’s the peaks and troughs of bad days, and then worse days, that we want to avoid. Whilst things are stable, albeit not brilliant, then the body has a chance to heal itself.
Just accept that either you’ve been pushing yourself a bit too much lately, or that “Life Happened” or simply that ME is very cruel.
After this scary and disappointing lull will come a surprising and occasional better day, and then a smattering of them, albeit spread out, then actual good days and then you’ll find that the bad days aren’t quite so bad, they occur less frequently and they last for a shorter duration.
I hope you’ll find at least one tip helpful in this long ramble and that, once your doctor eliminates any other medical condition, your dizziness disappears.
Let me know how you are in a couple of months,
LYNNE
On 14 Jul 2015 Linda asked:
Hi Lynne.
Do you know if dizzyness is known with ME. All of a sudden I have become so dizzy. I have no one to ask, and dont know what to do. Sometimes it is difficult for me to stand up and take a shower. It id scary. I understand if you dont have time to reply.
All the best from Linda

2 thoughts on “Dizziness in ME

  1. Hi Lynne,

    Thanks for the safe delivery of my order – efficient as ever!

    I’ve now got confirmation that my primary problem is Joint Hypermobility Syndrome/Ehlers Danlos Hypermobility type with secondary POTS. I probably did have a post viral fatigue state which triggered the slide from coping okay to struggling with multiple symptoms but ongoing issues are down to poor connective tissue.

    Just a thought re your recent web post on Dizziness in ME. It might be worth sign-posting Linda and others to the POTS UK website:

    http://www.potsuk.org
    POTS (Postural Orthostatic Tachycardia Syndrome) is the specific kind of orthostatic intolerance that I have. It is easily mistaken for, or can occur alongside ME/CFS and there are specific treatments and management strategies which can help. Many doctors know little about it and fail to recognise it, despite that fact that a simple test of lying and standing heart rate can quickly identify if it might be a problem. My dizziness problems have gone almost completely now that I am on a high salt high fluid diet.

    Feel free to pass my email address to Linda if it would be helpful to her to get in touch.

    Take care,

    David

  2. Thank you so so much for all this, it helps me more than you can know. I have no one to ask, so it is very helpfull. I have had ME for 16 years and feel the symphtoms are changing all the time, and now this dizzyness..
    But I take my VEGEPA and hope for better days. Again thank you!
    Linda

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