is there anybody here who has ME/CFS?

We have a few members who have ME. I have moved this post to other dizzy conditions forum so that more folks will see it and reply.

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We strongly advise anyone wishing to take up vrt or start/change/stop medication should consult their doctor first.

There are quite a few here. I used to have that diagnosis, but don't anymore as my fatigue is caused by something else. However, I have many of the symptoms. Are you okay?

thanks esther for replying,

no i am not ok at the moment! i feel sooo bad with the ME/CFS and have previous balance problems after a vestibular nerve section some 17 years ago now. was managing quite ok until last august when i started with ME/CFS. i had a bad ear infection 6 weeks ago and my balance has been terrible since then, coupled with the xhaustion and other symptoms of ME/CFS i just feel terrible. my ear still aches and the pain goes all down the side of my jaw and face, doc said no infection there but there must be something no right. have another appoitment with a diff doc at same surgery next thurs so am going to ask for a scan.

i hope you are ok, what causing your tiredness?

thank you so much for asking how i am, i feel so alone with this condition, i have a supportive family and husband but its hard for us all when every day i am the same, crappy!

love to hear frm you again,

take care,
sally

thank u so much! i have had a reply from Esther and its helped to know someone is listening and taking the time to ask how i am, its very much appreciated.

thanks again

sally

This may sound crazy, Sally, but is there a chance this pain could be coming from a tooth?

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Shellpointer

Hello my name is Karen and I am from NJ I just found this website after having three months of lightheadness, balance problems, pressure in my head. Can anyone relate to this? My doctors can't seem to find nothing. I am a prisoner in my own home because I am so lightheaded that I have trouble doing anything anymore, I am very frustrated

Hi aries and welcome to the site. Since your dizziness has been going on for months you really should try to get a referral to a balance specialist, usually called a neuro otologist, because ENTs don't specialize in balance problems.
When you have a good look around the site you'll see that your symptoms are very common, so don't worry - it's not unusual and you're not the only one

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We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

Hi,

I've been diagnosed with CFS, as part of my balance disorder as my fatigue stems from the brain attempting to compensate for the damage to the vestibular system.

Jules

I think there are degrees of CFS, as there are degrees of anything really. I've often thought about this in the years I've been dizzy and it stands to reason that anyone with a balance disorder will have extra fatigue caused, as Jules said, by the brain's attempts to compensate.
Every doctor I've seen has commented on how exhausting dizziness is.

Of course for anyone who had CFS to begin, getting a balance disorder on top of it must be horrific.

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We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.