I'm hoping to find out if anyone on here has an experience similar to me and if so, what if anything I could do to help myself.

A bit of history about me. A year ago I got sick and in April of this year I got diagnosed with CFS. I had to leave my very demanding job in May this year as I hadn't been to work in 6 months and had no future return date. One of my biggest symptoms which has been constant throughout this time has been dizziness, like I've drunk 3 bottles of wine. It makes me tense as I have to pull all my bodies resources together to do chores for instance loading the dishwasher can sound like a scrap yard in full swing with the amount of crashing and banging of crockery and cutlery as I cannot focus nor coordinate as I feel so dizzy. Before the CFS and during I have had low blood pressure normally between 100/70 or 90/60 and feel that this, in the main is responsible for my dizziness not the CFS however, the Dr's again at the check up appointment have advised me to eat more salt rather than investigating the reason as to why my blood pressure is so low and what impact this is having on my day today symptoms.

Now in general I believe my Dr's have been ok in the 25 or more visits than I've done in the six months of trying to find out initially what was wrong with me and I do trust them ish. But I can't help but feel they are not taking this blood pressure thing as seriously as I would like them to. so, before I go back and have a bit of a honest conversation I would like know if anyone else with CFS has had this experience. Any feedback would be greatly appreciate.

Thanks in advance.


5 Replies

  • Hi Lisa

    Yes I definitely have dizziness as one of my many symptoms. Like most of them it come and goes and can be mild to fairly severe, though by the sounds of things I don't think it is as bad as yours. For me I'm not aware of mine being linked to low blood pressure. If anything my blood pressure is usually normal but has been increasing slightly of late. Mine seems to kick in if I have done too much, do things too fast or am particularly tired or low. I'm permanently covered in bruises where I keep crashing and walking into things or stumbling against the wall etc.

    Apparently the other cause can be dehydration. Do you drink plenty of water. But so can some medication. Have you looked at the NHS website for more information. nhs.uk/Conditions/Blood-pre... Perhaps if you research a bit more and try and figure out yourself possible causes before you go back to your GP. But I would definitely want to know whether something else is causing it as that does seem quite low. Do they actually measure it at the surgery as it is usually a bit higher when they do because of stress and activity etc.

    Good luck in getting it sorted.

    Margaret. :)

  • Hi Margaret,

    Thanks for taking the time to reply.

    I think it hard to understand whether the dizziness is due to the CFS, a different medical condition or a mixture of both. If I can get some different views then it'll help me try and make sense of it. The blood pressure results are from various visits to the Dr's.

    I don't believe it's due to dehydration as I only drink water now and more than plenty of it throughout the day but thanks for the suggestion, anything is appreciated.

    I hope you are well at the moment and sending you best wishes for good health.


  • the type of dizzyness you describe sounds like orthostatic hypotension due to low blood pressure on standing could also be pots a seperate and treatable condition if you have had your iron levels checked it can still be worthwhile taking iron supplements. to find out more about pots and other symptoms of m.e c f s. you can check out pheonix rising website there is more info there than what you may find on other m.e/ c f s websites. good luck.

  • Hi Lisa,

    As I understand it low blood pressure is quite normal for CFS patients - or at least a significant subset of us. We also frequently have low blood volume.

    The dizziness was a troubling symptom of mine and, more so, my daughter mostly in the early months of the illness. And, I think, in our cases there are two main causes of dizziness;

    1)the dizziness that wakes you up with a spinning sensation when you turn over in bed is due to ear problems and can be helped with drugs - my doctor gives me Cyclizine.

    2)and the other, more the faint, lightheaded, drunken feeling is due to the low blood pressure and low oxygenation levels we get with this illness.

    To help with the low blood pressure (probably worse in the morning?) drink loads of fluids and have a salty breakfast - it really does help.

    One really important piece of advice I have for you is to rest - a symptom is a warning that you are doing too much. If you just push through and ignore the symptoms you're not giving your body the chance to recover and you'll just get worse. The ME association did a survey of patients which found that the people who pushed themselves most at the onset of their illness were more likely to become more severely affected.

    If you get too dizzy to load the dishwasher then you should get someone else to do it. Do the barest minimum you can get away with and try to relax about housework (and personal hygiene too if you get dizzy in the shower). The best advice I was given re. cleaning was 'you have a neurological autoimmune condition - anyone who judges you for the quality of your housework isn't worth knowing!'.

    And last, but not least, don't expect much from your GP, they really don't have a clue. The best you can do is order a copy of the ME association purple booklet for them. If you have a specialist ME clinic in your region ask for a referral.

    Sorry for such a long reply, hope it helps - my head is spinning now (gotta stop and take my own advice haha!)

    All the best X x x

  • Ah thank you so much for taking the time to respond, its very much appreciated.

    I'm very lucky that we do have a CFS clinic and I have been with them for 6 months now. They are very clued up and very supportive which is lovely.

    The clinic have just referred me for the table tilt test and to wear a blood pressure monitor for twenty four hours, so hopefully we'll know if its down to the CFS or POTS for example.

    Thank you everyone for your comments as it really does help to hear what other suffers have or are experiencing and how to try and deal with CFS.

    I have looked at the websites suggested and ordered the booklet advised.

    Once again thanks and wish you all better health. x

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