Does my partner have ME?

Posted , 4 users are following.

Hello, I'm looking for advice for my partner. He's been suffering with a specific set of symptoms for several years now. In general, every morning he wakes up with a headache and feels as though he hasn't slept; and when he tries to get out of bed his muscles and joints hurt so badly he can barely move. The same thing happens when he gets out of his seat at work - his first few steps are limped. His is a desk job but every night when he comes home he feels physically exhausted. It affects his mood too because he feels so drained all the time. A number of years ago it was so severe he couldn't get out of the bath one night so decided to go to the doctors. They took blood tests but basically said there was nothing wrong so he's lost faith and won't go back to the doctors.

Can anyone tell me whether this sounds like ME or CFS? I've read up on both and they seem quite similar although what I've read makes it sound like your symptoms have to be debilitating in order to qualify as either. My partner can still get about as normal just in pain most of the time.

Any help anyone can provide would be greatly appreciated!

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  • Posted

    First of all, don't get stuck in the semantics of ME versus CFS. The syndrome is typically called ME/CFS, and you could go crazy reading the pros and cons of whether this is the same illness. It's very difficult from your post to say what's wrong with your partner. If he's in pain much of the time but without major fatigue or post-exertional fatigue, it doesn't sound like ME/CFS, because those are hallmarks of the illness. If he feels "normal" most of the time, again, doesn't sound like this illness. But if he does have those symptoms of fatigue much of the time, he should see an ME/CFS specialist. Bloods coming back normal is the first step, because that rules out other illnesses. GPs aren't typically trained to recognize ME/CFS, which is why a specialist is the next step. Preferably, he should see an infectious disease doctor or a rheumatologist. Also, Google "ME/CFS symptoms" and see if they resonate with him. Go the "Solve ME/CFS Initiative" website, which has lots of useful information. I understand his frustration with doctors, but a diagnosis would be helpful, even though there's no treatment for this illness. Lots of rest and pacing can help. The worst thing a person with ME/CFS can do is to try to push through the fatigue, which can make the symptoms much worse.
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    • Posted

      Hi Jackie,

      Might be worth asking for a referral to a sleep clinic.  Sounds similar to the symptoms I was having when I was first diagnosed with sleep apnea.  My regualr GP was brushing me off as all my blood tests were normal but I happened to see a very young locum (I was in tears as I was so exhaused and in so much pain) and she said 'sleep apnea'...I said you don't understand...I am really done - I feel like I am dying and my system is shutting down.  She referred me to a sleep clinic and guess what...sleep apnea.  I wear a CPAP mask at night now so I will not stop breathing in my sleep and it has been life changing. I have other conditions (hypothyroid, blood clotting condition, etc) that I still have to manage but I have the strength now to deal with them.

      Hope your husband feels better soon.

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  • Posted

    Hi michellebee first let me say I'm sorry you & you're husband sound so desperate ,it's typical for Drs to make you feel you're a waste of time it takes so long to get. A diagnosis it will take many Drs visits unfortunately!!!

    i was wondering if you've looked into fibromyalgia,it sounds very similar it's worth a try ???  I hope you get some answers soon ? Take care x

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  • Posted

    Thank you so much for your responses - everyone's advice is very much appreciated. I forgot to mention that he gets the shakes a lot too - in his hands and legs - and generally feels really weak when this happens. Also when he gets colds it hits him harder than I've ever seen. He gets flu like symptoms (but still has an appetite so not quite a flu, i don't think?) to the point that it even hurts him to urinate. I don't know if that changes anyone's opinions on what it might be?

    Anyway, we'll keep searching to get as much info as possible, although I know a doctors visit will be somewhere on the cards!

    Thanks again all!


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