Introduction - newbie saying hello

Hi. I am on a few other health forums on here, and just joined this one.

Just wanted to say hello I guess and see how others cope and what symptoms they have to deal with.

My CFS had a sudden onset 2.5 years ago. I was 36. Started with dizziness/ headache/ fatigue and fever. Thought it was initially a virus but it never got better. After many GP visits and a neurology visit, I was diagnosed about 6 months into my symptoms.

I suffer bouts of severe headaches, constant dizziness, constant eye pain, blurry vision, tinnitus, palpitations, low grade fevers, sleep problems, something I can only describe as 'internal shaking', nausea and trouble with clear thinking and finding words/ holding conversations.

I just wondered if others suffered with these, as well as the fatigue? My fatigue was actually not the worst symptom to begin with, though now it is more of an prominent issue.

4 Replies

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  • Hello. We have just been filming a woman with ME today in Wales for ITV news at 6 today. She has a multitude of symptoms and she is now, very sadly, bedridden. There is little help for anyone in Wales as there is no Specialist. You perhaps see this item via the internet? There is likely to be more on Friday, a discussion about ME with Chris from MESiG and someone who disagrees with the concept!!

    Where do you live, which part of the UK? Yes many people have all of these other problems, not just fatigue. Probably, if it's just fatigue and nothing else it is CFS but with all the others it is ME. But that is just a thought. Many people have CFS connected with other illnesses or after an illness has weakened them but they don't get all the other things as well.

    Like to talk more? Look forward to hearing from you.

    Miriam

  • Hi, thanks for the reply Miriam. I'm in the Midlands, and didn't see this bit on itv news. Will see if I can access it on the internet somehow.

    My heart goes out to the lady, and others who are bed ridden with this awful condition. I'm a long way off this currently, but I do fear this could easily be me if the condition progresses and doesn't stay as it is now. Guess that's one of the hardest bits not knowing what the future holds.

    I have not been to any specialists etc as I figure I can cope quite well... I suffer chronic pain (pudendal neuralgia and endometriosis) and went through pain management with these. Don't want to take any more medications than I do, as tried so many and they cause more problems than they generally help with. so figure there is little else that can be done anyway.

    I've been reading recently that endo can cause severe fatigue so think I have a combination.

  • Yes, it was on again today at 11.35 am ITV Wales with extra interview if you can find that somewhere. Other people are looking for it too! Yes, some people are worried if it will happen to them too. That's why pushing themselves is harmful, not listening to the body. My friend pushed through with exercise that she was told would make her well and she is not house/bed bound. And she's only 32. Evetter on the TV is 29. So sad.

    All the best, Miriam

  • Hi there. Welcome to the forum. As you can see it's not a particularly active one but there is usually someone to offer support in times of need.

    I can relate to all of your symptoms. It is a very confusing and frustrating illness to have. Each person finds ways of managing their particular set of symptoms and sharing your ideas can be really helpful. Is there anything in particular that you are struggling with right now?

    Look forward to more posts. Take care x

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