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Could you explain the main difference between fibro and ME please.
I was diagnosed 18 months ago with fibro but unlike all other sufferers I sleep for hours at a time. My average total sleep over the past 18 months is 15 hours. And if I try to reduce that I literally fall asleep within minutes of sitting down. My other symptoms are pain in most of my joints (Shoulders, hips, knees, ankles and occasionally finger and toe joints), my body doesn't seem to be able to control itself I'm either freezing or sweating lots its not often I'm at a happy medium. I have quite a lot of muscle weakness especially in my thigh muscles, this is made worse not better by exercises (I recently did a course of hydrotherapy). After each 30 min hydrotherapy session my muscles would ache far more than I would expect considering the little work I did on them to the point of shaking and twitching and 30 mins of hydrotherapy would require 4-5 hours sleep to recover. I also get regular muscle twitches which last for ages, the longest running one was in my thigh muscle to the right of the central muscle, it twitched visibly on and off for 3.5 days. But these can occur anywhere but typically my thigh muscles, my arms and my eyelids. I also have restless legs. I also have issues with my memory and concentration.
I was initially diagnosed with connective tissue disease 5 years ago but this has now been changed to just fibromyalgia as in recent bloods the only positive result was ANA.
Recently a friend suggested it sounded more like ME than Fibro and hinted that I was probably given the fibro diagnosis because it was made by a rheumatologist not a neurologist. Any ideas? Is it worth asking my GP or rheumatologist? Whenever I mention to my rheumatologist how much I sleep she says well it can't be quality deep sleep, I recently tracked my sleep for a month using an app on my phone and over 80% of all sleep including daytime naps is deep sleep (based on movement and sound) and I certainly dream a fair bit. I usually wake once in the night to go to the loo but have no issues getting back to sleep once I've emptied my bladder.

Hi tiredlady,

It sounds as though you're suffering from BOTH conditions - as extreme exhaustion, sleepiness and twitching muscles are key symptoms of ME, the pain in your joints and your cognitive problems could be linked to EITHER, while your restless legs sound more fibromyalgia - related. It is possible to have both conditions at the same time and this would help to explain your 'rogue' symptoms.

For a definite fibromyalgia diagnosis you need to have had pain continuously for at least 3 months. The pain and tenderness should be widespread and affect both sides of the body above the waist. One way of making a firm diagnosis is to carry out the 'tender point test' which involves applying light pressure to 18 specific sites on the neck, shoulders, elbows, chest, lower back and knees. If you experience pain and tenderness in at least 11 of these sites it's highly likely you have fibromyalgia; if you haven't already undergone this test it may be worth asking your GP if they can do it. Also, it's worth mentioning your concerns that you may have ME as well.

I'm also wondering if you suffer from flu-like symptoms and a general 'under the weather ' feeling, as this is typical of ME? Also did your symptoms develop after suffering from a precipitating event such as an infection, a major trauma or stress (e.g. a road traffic accident/redundancy/divorce), pregnancy or an operation? Again if this was the case it would point to you having ME.

I would definitely go back to your GP and ask if they can double check the fibromyalgia diagnosis and check whether or not you have ME.

I hope this helps

Yes I do often have flu like symptoms & days when I feel not right & almost not there if that makes sense. All of my symptoms first started 5 years ago & I had regular chest infections they only got bad last year after I had a cold & urine infection