Is this normal and advise needed

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Hello all,

Really after some help for my aunty. She has been ill for the last 8 weeks, was fine one day and woke up the next day and couldn't move due to lack of energy. It took them 6 weeks and they decided it was CFS however they haven't given her much help at all. She can't eat, and a good day of eating is eating 1/2 a roll and an apple?!? Been the same for the last 8 weeks and I wonder if this was the same for everyone? She's feel anxious about going out but I am also worried she might be going around in circle, feeling better so going out for a 5 min walk but then the day after having a relapse.

Also could anyone recommend anything we can offer her/should sign her up to or anything that might help? Saw some posts on here about going to an M E centre, has this helped people?

She just isn't the same and really looking for any advise from anyone on what might help.

I look forward to hearing from you all

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12 Replies

  • Posted

    Eight weeks seems very quick to decide that it was CFS, and rule out alternative diagnoses. With CFS, I'm afraid that there often isn't much which can be done to help, but she should only be given this diagnosis when other things have been properly explored.

    A sudden onset tends to be related to an infection, but it sounds like nothing like this was found. This seems a bit odd for CFS to me.

    Also, some people do go through brief period of ill health and exhaustion which are not properly explained, but which they recover from. It could be that your aunt will improve naturally?

    Not sure what to suggest.

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    • Posted

      Thanks for the message Fidd. There wasn't any infection or anything.

      When you say other things explored..could you let me know what you mean? As I would like to make sure they have ruled everything out.

      Thanks

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  • Posted

    Kudos to you for caring so much about your aunty. Has she had a full range of bloodwork to rule out other illness possibilities? This is very important. If it is ME/CFS, it's very important that she gets lots of rest and does not push herself. Even when she feels better, she should take it easy. Otherwise, she can get into the push/crash cycle so common with this illness. Pacing is extremely important. If she can, she should go to an ME/CFS specialist. 
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    • Posted

      Hello Jackie.

      Thanks for the reply. She has had a few different sets of blood tests which haven't shown anything. Didn't think about getting in touch with a specialist so will look into this. Thank you

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    • Posted

      Hello Jackie,

      Thanks for the reply. Could I ask, how long does it normally take to diagnose? She has had a few different blood tests which have all come back with nothing? I think she has had the push / crash cycle bless her, just hard to see someone like this.

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    • Posted

      Officially, at least here in the U.S., for an ME/CFS diagnosis to be made, the person has to have had symptoms for 6 months. However, in reality, ME/CFS can be diagnosed way more quickly. In my case, it took 2 months, but that was only because I got the usual runaround from doctors. You know, the "it's all in your head" treatment that so many of us get. If your aunt can get a complete blood panel done (rather than just a few blood tests) that rules out other illnesses, she could be diagnosed immediately by a competent, knowledgeable doctor, like an infectious disease doctor specializing in ME/CFS. Once I got to the right doctor, he checked my lab results, which were all negative, and asked me some relevant questions about my symptoms. He diagnosed me in about 20 minutes. This is a complex illness, but it's not rocket science. A doctor who has seen many patients with this illness will probably know what's up with your aunt. Best of luck to you.
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  • Posted

    I would be curious to know why she can't eat...no appetite, can't keep food down, or depression?  Lack of nutrition will weaken her further...in my experience, try protein shakes--if you make them at home with powder, they're more appetizing then the stuff in cans.  

    I'm in the US so don't know about ME Centers, but she does need to get some crisis care at this point, I think.

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    • Posted

      Hello nannettesea

      To be honest, I would say a combination off all the things is why is isn't eating. I think she has been through phases of it all.

      I will try the protein shakes, we have tried the complan drinks but they weren't very nice and they are the only option we have

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  • Posted

    I agree that 8 weeks sounds very quick to be diagnosing CFS.... not sure what the N|ICE guidelines are re diagnosis but I'm sure it's longer than 8 weeks. As everyone has said, has she had lots of bloodwork done to look for other things??  Who made the diagnosis?? Was it a GP or a medical consultant? I think I would want a second opinion in this case. So glad your Aunt's got you to look out for her...plenty of TLC.
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  • Posted

    Hi Babe; yes I agree with these other comments.....I really think your Aunt needs more thorough testing.....when I first started to read your question, I thought "oh no, not Guillian Barre.....but when you said she could walk the next day..then no,,it's not that....thank goodnes"....but if your aunt had NO symptoms prior to the first day, then Yes, I'd be making an appt with an Internal Physician or an Infectious Disease Specialist (some are good, but research / ask around for one that Knows his/her stuff)......also perhaps some Multi-vitamins with the Protein Shake.......good luck
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  • Posted

    Has Aneamia been ruled out? My friend got exhausted after nursing her hubby through cancer and after he died she really crashed but it wasn't ME. She's a vegetarian who doesn't get enough iron in her diet too and she needed two blood transfusions.
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  • Posted

    I agree with everyone else, I have been to an M.E. clinic though I would not go there again if I can help it has made me a lot worse (it could just be the incompitant occupational therapist that is the problem though) I don't think I shall ever get over the fact that she sent two letters about me to my doctor with loads of mistakes in them and two things I did not want her to disclose.

    I really hope that your aunty gets better soon.

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