I know that in addition to all the well-known symptoms associated with ME/CFS there are a considerable number of other symptoms that can sometimes occur. But when should I go and see my doctor if I develop a new symptom? Or when an existing symptom isn’t quite the same as it used to be? In my case I’ve always had a problem with balance and I know you have described this as ‘walking on rubber’ – which is exactly how it feels at times! However, I’m now having what are best described as occasional dizzy spells where I feel very “off balance”. I also suspect that my hearing isn’t quite as sharp as it used to be. I’ve mentioned this problem to my new GP, who checked my blood pressure, looked inside my ears and said it was probably caused by ME/CFS – but come back if things don’t improve! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. But at the same time, I don’t want to find that something important, or treatable, is being missed.
It is always a good idea to speak to your GP when a new symptom – affecting either physical or mental health – develops during the course of ME/CFS, even if the symptom is one that is often reported in ME/CFS. This is because it’s quite possible that a new symptom is being caused by a completely different condition, possibly one that has symptoms that are also present in ME/CFS.
For example, an overactive thyroid gland (thyrotoxicosis) can cause sweating, palpitations and anxiety. An underactive thyroid gland (hypothyroidism) can cause gastric problems, increased sensitivity to the cold and cognitive dysfunction.
In the case of balance problems, which are very common in ME/ CFS, a change in nature to having actual dizzy spells, or spinning round sensations (vertigo), are symptoms that you must see your GP about. This is a problem that could be caused by a fall in blood pressure when you move from lying to standing – known as orthostatic hypotension. The loss of blood supply to the brain can then cause dizziness, nausea, sweating and feeling faint, or even fainting. However, it could also be caused by a problem involving the way in which the ears, eyes and brain coordinate messages about body position and which is not related to ME/CFS.
It is important to go back to your doctor if these new symptoms continue, or get worse, because you may need to have some further investigations carried out or be referred to the Ear, Nose & Throat (ENT) department at the hospital, to find out why these episodes are happening. I would also advise that you have a proper hearing test done – if this has not been checked already.
- The ME Association has detailed information covering the physiology, diagnosis and management (drug and self-help) of all aspects of ANS dysfunction:
- A useful screening tool for ANS dysfunction in ME/CFS is the NASA 10-minute lean test.
- More detailed investigations in hospital can be done using Tilt-table testing.
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.