Brain MRI and CFS/ME?

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I got diagnosed with CFS/ME a year ago but my condition has become a lot worse recently. I had an emergency MRI on my back last week as I've had awful pains in my legs and lower back but my MRI came back ok, I was reading online and apparently they can see if a patient has CFS/ME by brain MRI scan now? Is that true? Has anyone had one of these before? My symptoms are very similar to MS but was thinking they probably would of seen that on my spinal cord? So confused right now!

Thanks 😊

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  • Posted


    ​I have had both a Brain MRI and a spine MRI, both came back clear.  As far as I know CFS/ME can't be seen on a brain scan.  I have been diagnosed separately with Fibromyalgia and severe M.E/CFS.

    ​Welcome to the world of confusion - nothing making sense and no-one knowing why we are like we are and how to solve it.  On my really bad days I remind myself it's not as bad as Cancer.  Not easy when you're in so much pain you want to climb out of body.

    Keep fighting on xx

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    • Posted

      Thanks for your reply 😊

      How did you get diagnosed with fibromyalgia? The awful leg pain I'm experiencing sounds more like fibromyalgia than CFS, my doctor mentioned fibromyalgia to me a while back but I don't think he actually diagnosed me with that. I was coping ok working 25 hours a week as a nursery nurse before November when I had a ovarian cyst removed but since then my CFS has become so bad I haven't been able to return to work yet.

      Yes that is true i try to remind myself people do have illnesses a lot worse and I'm lucky to have the things I've got in life but it is hard when your in so much pain.

      Do you manage to work with your CFS? X

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      ​I was diagnosed with Fibromyalgia first, it was done at the hospital.  One of the main criterias for Fibromyalgia are the pain points.  If you look it up through google it will tell you where they are.. I scored 12 I think I would of scored more if he'd moved the exact points he was touching a little.  However that still won me the title lol​.  Although the symptoms do over cross I would say the pain comes more from my Fibro and the memory loss, co-ordination and exhausion comes from the M.E. I personally don't like the title CFS, I'm not just tired there are lots of other symptoms.  A title named after only one of the symptoms makes people think you're just tired like they get (so not true). 

      ​I am luckly a self-employed Architect who works from home.  I work as much as I can (oops actually too much) as I get told by everyone - I end everyday feeling yuck just in different levels of yuck.  I could not work as hubby brings in enough money but I love my job.  I also find if I don't work the Fibro is worse.  I would be no good not having a job, I'd try to clean the house with is more painful for me than sitting at my desk working.  I need the distraction of work to get away from the pain also to help me sleep at night by wearing out my brain. 

      ​I am now constantly in pain.  It used to be I didn't know a day without pain at some point from 12yrs - 32yrs, now for the last 5 years it's constant.  Gp doesn't want to give me more pain meds cos morphine is next which will make me more spaced out then I wouldn't be able to work. I know I'm lucky to have a job which I can fit around my conditions as much as possible. xx 

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  • Posted

    There are currently no bio markers for me/CFS. So no, an MRI won't reveal the illness. The pain you describe could well be back pain, which can often go into legs. Again, the cause of such pain may not show up in an MRI. I have the exact same kind of pain you describe, and it's related to back issues. I know this because I had it years before I got me/CFs. Also, an orthopedic surgeon said it was related to the back. It's of course still possible that your pain is caused by me/CFs. Fibromyalgia pain is diagnosed by pressing on specific "trigger points" throughout the body. A rheumatologist knows about this.
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