I may have CFS looking for advice

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Hi for years I have been suffering from my legs getting weak, acing and painful. It's gradually getting worse. I have had MRI scans plus other tests as they thought it may be down to my diabetes, and that was clear. I was on statins, so stopped them for some months and found not to be that. I have seen 4 doctors over the years and they are at a loss. The last doctor suggested I may have a mild form of this.

My symptoms are my legs, i wake up and my legs arelike jelly and hurt quite a bit, and I am getting so tired to the point at work I sometimes have a 15 minute sleep in my luck break, when I get home from work I sometimes have to have a sleep.

The thing is this comes and goes, on some occasions i'm fine, I can cycle 100 miles, then it flares up and I find it hard to cycle the 1 1/2 miles to work on my electric assisted bike.

I used to have months between episodes but now if I get a week where i'm ok it's lucky.

Could this be CFS or is it likely that i'm barking up the wrong tree?

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  • Posted

    It could be, mine was triggered from glandular fever 2 years ago. I had my own business now I struggle to walk the stairs. I have only just been diagnosed with Cfsme.
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  • Posted

    Have you had any trouble with your eyes, too, and have your docs checked your for MS?  My sister had MS and some of  your symptoms sound quite familiar, but it is my understanding that often blurry vision is an early sign.  My sister's legs were definnitely painful and as you wrote, "like jelly." The off and on again symtoms are common with MS while it is still in the intermittent stage.  

    However, CFS symptoms are a wild mix of things, including those you have listed.  The exhaustion, weakness, and needing to take a nap on the  job--- and some major bouts with brainfog, were the things that drove me to retirement. 

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  • Posted

    Hi Megga,

    I'm not a doctor, but these do not sound like the same symptoms that I have experienced from ME/CFS the past 25 years. Of course, many sufferers experience different symptoms. I'm chronically tired-sometimes worse than other times. When my symtoms do flare up, I experience terrible brain fog, headaches, weakness, and dizziness. It can be difficult for me to concentrate. As tired as I sometimes get, it is often difficult for me to fall asleep, though. That is what makes this so frustrating. 

    Have you been seen by a neurologist, by the way? Anyway, I'm so sorry you are feeling so bad, and I hope you end up getting to the bottom of this! KPD

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  • Posted

    It's very hard to tell, from your post, what's going on. It's true that ME/CFS is a continuum--some people, for instance, can continue to work with the illness; some are extremely ill and bedridden. It's hard to imagine a person with ME/CFS sometimes being able to cycle 100 miles, and with no post-exertional fatigue. Some core symptoms are debilitating fatigue, especially after exertion; cognitive problems, like short-term memory loss and difficulty concentrating; sleep problems; POTS (look it up). Go to the "solve me/cfs initiative" website and see if the symptoms resonate with you. I assume you've had bloodwork that rules out other illnesses, which is the first step to getting diagnosed. If you still suspect this illness, it's critical to see an informed specialist, like an infectious disease doctor or a rheumatologist. By examining you and asking the appropriate questions, they should be able to give you a diagnosis. There is no physical test for the illness. One thing about ME/CFS:  there is no cure. But the illness can be managed through pacing and rest. The worst thing to do is to try to push through the fatigue. It may lessen chances for a recovery, can result in a crash, and can keep perpetuating the illness.

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  • Posted

    Yeh i've had test after test. I have OPMD that can affect the legs but an MRI ruled that out.

    Just getting me down quite a bit, at least if I knew what is is I could have my moment of feeling sorry for myself and then deal with it and move on.

    Thanks for the reply

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