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Possible CFS

Posted , 7 users are following.

becky46482
becky46482

Hi All, 

I’m looking for advice really.. I’ve been referred to a cfs/me service after 3 years of harassing my docs. They always did the same blood tests to check for other reasons for my fatigue however they always came back normal. I’m a little worried that I’m going to get dismissed or told it’s depression by the clinic.I’m starting to feel hopeless and frustrated with feeling ill/tired. I don’t want people thinking I’m making it up or it’s in my head. Has anyone else been through this or been to a clinic? 

Thanks 

0 likes, 11 replies

11 Replies

  • Noj_2804
    Noj_2804 becky46482

    Posted

    Hi Becky, my name is Not. I have been trying to get a diagnosis for 27 months. My doctor still refuses to give me a definitive diagnosis because he does not know what is wrong with me. I am fed up with everyone not beleiving that I am Ill. I just need someone to trust that I am not making this. I am not well and need someone to see it! I am nearing the end of my tether and am seriously scaredfor my mental health. Sometimes I think of just ending things to finish things once and for all !

    • becky46482
      becky46482 Noj_2804

      Posted

      Hi Not, 

      I completely feel your pain and feeling like no one is listening! My docs just do the same tests and tell me it’s because I’m a mum or because I’ve had depression in the past however this all started before I had kids. Maybe ask your doc to refer you to a cfs clinic. However remember your not alone and don’t give up your fight for an answer. 

  • Beverley_01
    Beverley_01 becky46482

    Posted

    Hi Becky,

    I've been to a cfs/me clinic in the past and found it helpful. My symptoms linked back to a car crash-was fine before that. They said i definitely fit the bill for cfs/me.

    I stuck only to the symptoms and feelings since it all began. They may ask you about past medical history but that doesn't mean they'll judge you as depressed. The service is there to help people manage their lives with cfs/me.

    Beverley

    • becky46482
      becky46482 Beverley_01

      Posted

      Hi Beverley, 

      Thank you for replying, you have definitely reassured me about the clinic, as the doctor told me that because I’ve had depression in the past that they will more than likely dismiss me. I do suffer from endometriosis, PMS and IBS so I’m wondering if it’s all linked.  Thanks 

    • Beverley_01
      Beverley_01 becky46482

      Posted

      Hi Becky,

      Try not to think much about what the doctor has said. I'm lucky i have an ok doctor who was happy to refer me but, i did have to bring it up after a friend of mine was referred via a different doctor in a different area to mine. My cfs/me stems from a car crash and so all my symptoms were put down to that. 18 months later, nothing had changed so i asked about a referral. My friends was post viral firstly and then led to cfs/me. There are many paths into having the condition.

      Re: IBS, i have that now too and so did my friend (before and still)

      Try not to worry too much about the referral. They really could help you. As philsey says, be honest and think about bad days and your specific symptoms as we're all different.

      Beverley

  • bob1970
    bob1970 becky46482

    Posted

    Have you looked into the criteria for a ME/CFS diagnosis yourself? You mentioned fatigue and that is only a part of CFS. There are many other symptoms that go along with that and some symptoms are generally required for a diagnosis.

    It might be an idea to look at the criteria and see if your symptoms match at all.

    • becky46482
      becky46482 bob1970

      Posted

      Hey, yes I’ve looked into all symptoms  and I definitely match quite a few of them. With the blood tests I’ve had done have ruled out a lot of other conditions.
  • philsey
    philsey becky46482

    Posted

    Becky,

    Well done for fighting to get a referral. CFS/ME can get a lot worse if not managed. Hopefully you will get some reassurance and advice as an ME clinic is the LEAST likely place to dismiss you or tell you it is in your head. When you go to the clinic focus on your own personal over-exertion and resulting fatigue. Tell them  in what ways it is impacting your life, what you can and can't do. Fill in any questionnaires honestly. Wait for them to bring up ancillary issues like depression and not feeling listened to. Above all tell them what you are like on your worst days. God go with you. P

    • becky46482
      becky46482 philsey

      Posted

      Thank you for the reassurance, I definitely feel like I have got worse over time. I’ve been writing down a list of symptoms I get so when I go there I won’t forget anything. To be honest having CFS was the last thing to cross my mind and I do feel a little scared about possibly having CFS.

      Thanks 

    • philsey
      philsey becky46482

      Posted

      Of course, it is scary. But once you realize the benefits of adapting your lifestyle, it is possible to make a go of it. x

       

  • Sockpim
    Sockpim becky46482

    Posted

    Hi Becky,

    I can empathise with you on this one. I've had chronic fatigue for about 10 years now. After being palmed off by doctors for the first 5 years (probably because I was in my late teens) I went to a CFS clinic. Because they couldn't identify a rooe cause (post surgery or PTSD etc.), they said I had a mild version of it and were less than helpful. Another 5 years went by and I pestered the doctors once again and saw a clinician at a different clinic, who then said it was clear I had CFS. Although I've learnt the basics of managing my energy levels the hard way over the last 10 years, it was helpful to get the diagnosis as my employer now has to take it seriously.

    I'm not a doctor, but using blood tests to identify CFS is ridiculous. CFS is most commonly identified through symptoms alone. Blood tests might help if it could be something similar like Fibromyalgia or EDS (Ehlers–Danlos syndromes), but they're pretty useless regarding CFS. Feel free to message me if my answer has been useful, but if I could give you one piece of advice with it that I learnt at one of the support groups is that if, on one day you feel you have more energy, don't do more, just do the same amount of stuff you had planned and just accept the extra energy as some kind of gift from your body. I have a full time job and things that need doing when I get home, but it can be done.

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