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Hi I am looking for those who know about CFS. I had glandular fever aged 12  I was pretty ill, hospitalised and it took me a year to get back to school. It took quite a few years to get over the tiredness but I did get better. Three years ago I woke up with vertigo and balance issues. I am dizzy a lot, the floor is bouncy, I get daily headaches, feel generally off it sometimes with nausea, suffer insomnia ( awake until at least 2.00/3.00 am ) I do not get any aches and pains but a gland in my groin sometimes swells up and is very painful. I have had extensive tests and the following have been ruled out:-



vestibular neuronitis

mal de Debarquement 


vestibular migraine 


I had to give up work eventually I just don't know how I am going to feel one Day to the next. I sometimes just feel this malaise I find it hard to describe but it's not that I want to sleep just can't be bothered and laze around. I am 52 live in U.K. So grateful if anyone can help? Thank you x

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  • Posted

    Has your dr considered depression? You don't have to feel down to be depressed.

    i am on the road to recovery from Cfs, like you a lot of can't bothered and laze around very tired. Started pacing following GP advice and now starting to feel normal again but it's been a long and bumpy road 

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  • Posted


    My first symptom of CFS was the dizziness, off balance, spaced out sensations with bouncy floors. Initially diagnosed at Labyrintitus. However, eventually I was diagnosed with PVF/CFS. I am much more well now following CBT, Pacing and Graded Exercise therapy. I am back at work full time and I exercise, currently training for a half marathon. However, if I push too hard and my body starts to get tired the first warning is the dizziness kicks in. I have learnt to recognise this and scale back until I well enough to move forwards again. I also use a supplement called D Ribose (powder form) available on Amazon - really really helped my recovery.

    I am 40 now and started with this aged 37. Good Luck!

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  • Posted

    Hi Sarah

    ?Given you age have you considered that your symptoms could be linked with the menopause? I've had M.E/CFS for over 20 years and was managing it with good diet, pacing, rest, gentle walking and yoga having good days and bad days. But at the moment (I'm 50 now!) and since starting to go through the menopause it's like all my CFS symptoms have got worse with new ones on top. I now have problems sleeping, have dizzy spells which I didn't get before, headaches I didn't get before and a constant fatigue which doesn't seem to go away. 

    ?You might want to have a look at people's symptoms on the menopause forum on this website and see if you can relate to them. A lot of the menopause symptoms are actually really similar to those of CFS. So if you have CFS already then have the menopause on top of this it can feel like your symptoms are twice as bad!!

    ?The good news is you should get better with time if this is the cause of your new symptoms!!!


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  • Posted

    Saarah, when you mentioned "the floor is bouncy" I remembered all too well my first year with CFS when that bouncy feeling first started.  I was on a trip with my oldest daughter, and had a heck of a time.  And I became very tired and weak.  When I got home, I eventually landed in the hospital where I was diagnosed with hypoglycemia.  Later, a specialist, said that was not a correct diagnosis.  Later yet, my family doctor diagnosed me, after ruling out everything else with blood work, etc., that I had CFS.

     I had had vertigo years earlier when I was still teaching high school, and it was so bad that I had to stay in bed for several weeks. Was sent for a brain scan as that doc thought I had a tumor.  Couldn't walk a straight line, couldn't read, couldn't turn my head without dizziness taking over.  Tests showed no brain tumor.

    But I never connected that event with the later one that was diagnosed as CFS.  I do remember telling the doc who later diagnosed me that I felt like I was trying to walk on a floating rubber raft on a lightly wavy lake.

     No nausea.  Yes to insomnia. Malaise.  No swollen glands at diagnosis, but have them periodically now.  Minor headaches now, though I didn't use to get them except back when I was in college.  Some days I'm able to get up and walk the dog and run errands.  Other days I have to stay on my recliner and watch TV or read.  

    Other problems have cropped up, but after all, I am 82 and unable to exercise the way I should.  Had cancer and worry sometimes that it is returning.   Try to close my mind to that possibility.  So...I live my life, a very quiet one...with gratitude for what I still have and try not to get too disgusted with myself when I have to take one of my frequent "days off" and stay in bed.  

    I miss dancing!  I miss walking as far as I want!  I miss getting to church each Sunday!  I miss getting to my writing group regularly.  I miss taking short trips to visit my kids who live out of town.  I miss a lot of things!  But I am grateful for my good days, for visits from the kids, for kind neighbors and a climate that is neither too cold nor too hot as I can't manage heat. (My personal thermostat control gauge is broken.:-)

    Overall, I sympatize and empathize with what you have described.  For me all this started when I was in my sixties.  Since then it has been a succession of other problems and a downward slide.  I have learned to be grateful for what I can do and for my wonderful and understanding family.  The "good days" are a blessing!

    I sincerely hope you are one of those of us who turn the corner and return to health within a few years.  It happens!   God bless!


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