Undiagnosed and rare conditions
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Looking for some advice on ME/Chronic fatigue. Do I have it?

Hi,

I am a little apprehensive to talk about something like this, as I am not really someone who "talks" but I am really struggling at the moment and I was wondering if anyone could advise if my symptoms are in line with ME and if so how I can get a diagnosis?

I have always been a very driven person and at times in the past and for many years worked 16 hours a day, sometimes 7 days a week and constantly worked in stressful environments. I recognise now how stupid I was. There was a point recently where my brain just stopped working, I guess you could call it a breakdown. Since December, I have completely changed my lifestyle. I work from home for myself and work only a few hours a day as well as removing all of the stressers in my life. The problem I have is that something has happened to me. The only way I can describe it is that shortly after (delayed by a few weeks) I stopped work I felt like I'd been hit by a bus. I couldn't even make my own lunch or dinner because it completely mentally exhausted me. I have spent most of the last 7 months resting all day, which is very difficult for me as I have always been an active person. It has now been 7 months and I have improved but it's such a small and frustrating improvement. I can make my own food and do very simple things. But if I go for a walk or speak on the phone for more than 10 minutes, I am mentally exhausted for days, I can't do any exercise, I can't even do my shopping without having to sit down for the rest of the day. I also have bad tinnitus all the time. I have been to the doctors but it feels like they aren't really interested in any kind of diagnosis they just keep saying "try these anti-depressants". I have been and continue to be completely house-bound and as a result I slipped into a very low depression and it feels like I have damaged myself beyond repair. A friend of mine who has ME tells me she is sure I have a mild to moderate form of ME. I was wondering if these symptoms sound like that, and if so, how can I go about getting a diagnosis?

I'm grateful for any advice in advance.

Many thanks.

Replies

  • Adrian_ScopeAdrian_Scope Testing team, Scope community team Posts: 7,917 Scope community team
    Hi @hughesforce1 and welcome to the community.
    Unfortunately as none of us are medically trained here, it wouldn't be appropriate for us to give you any medical advice about this and you should definitely speak to a doctor.

    It can be tough to get a diagnosis of ME though, so it's often recommended that you keep a diary of your symptoms that you can then present to your GP. Once you have a diagnosis there are some ME specialists out there who may be able to do more to help. There should be some more information about this on Action for ME.
    Senior Community Partner
    Scope

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  • hughesforce1hughesforce1 Member Posts: 2 Listener
    Thank you Adrian, I have since been to the doctors and they are going to refer me to a CFS clinic as she believes that my longlasting symtoms suggest it could be 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @hughesforce1, I'm glad your GP has been able to refer you. I know others with the condition and it can be hard to find someone who takes it seriously.

    Do you have a date for the CFS clinic?

    ME Association also have some great information. I hope you can take things easy. :)
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    Scope

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  • janer1967janer1967 Community champion Posts: 8,634 Disability Gamechanger
    Hi @hughesforce1 Welcome to the community, I am glad you are making some progress and your GP has referred you, It may take some time to get an appointment but I hope you are not waiting too long and you get some answers so you can hopefully get the right treatment.

    Keep us informed and let us know how you get on  
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