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I’m so confused, any advice TIA

Posted , 3 users are following.

gemma_09955
gemma_09955

Hi all, 

First of all I take my hat of to you all sad 

This is tough. 

I have been told today by a gp that he thinks i have CFS. I am gutted as by reading up on it it doesn’t seem like there’s any treatment for it. 

I am folate deficient and have epilepsy, both I am being treated for with meds. 

Main symptom is fatigue. I work 5 days a week yet the 2 days I don’t work I lay in / on my bed as I’m just too tired. The minute I get in from work, Pjs on makeup off and lay down. I have no energy for any kind of social life, chores are 10x harder than ever. Breathless just waking up the stairs, muscle weakness, always cold. Tingling legs. I got my blood test results today and apparently they’re all normal. TSH was low but T4 and T3 were within range so gp said it’s ok. Few others were slightly out of range but doc said they’re fine. 

My question is... in the uk when I get sent to the CFS clinic, what happens there? Do they do more blood tests? Or do they jump straight into CBT, I just I wasn’t ready for the long game. 

Any advice?  

Wishing you all well x

0 likes, 4 replies

4 Replies

  • Guest
    Guest gemma_09955

    Posted

    Hi Gemma,

    I was given the CFS diagnosis last November and my neurologist told me about the CFS clinic but I've not been yet. Unfortunately there is a very long waiting list where I live. (I'm in the UK)

    I've read about it and from what I can see it's all about ways to make your life easier, about pacing yourself etc. The nurses that run it don't do any medical procedures as you've already been diagnosed in order to be going there.

  • s47448
    s47448 gemma_09955

    Posted

    Hi.

    When I went for my appointment at CFS Clinic, I did not have any blood tests. It was a quite in depth chat about my past, my lifestyle, mobility, relationships, work etc. The M.E lead had me doing some basic movements and breathing excercises to assess me for what type of ongoing help I would need. 

    The people that have extreme conditions will go on for weekly ongoing meetings however, as I no longer suffer depression, and have really worked on my diet/lifestyle/enviroment etc she just gave me a few recommendations for excercise and said im doing all that is possible with my condition anyway so nothing to add.

    To be completely honest, it was really nice talking to somebody that understood but I have learnt so much more myself by reading, clean eating, trialling/ experimenting, private tests, talking to people of forums I felt like the m.e lead was behind in the times and restricted to the nhs ancient guidelines. I really don't want to be disrespectful but you feel like you are just being put through that process because gp's don't know what to do with you and it holds little actual substance when you do it.

    Although I recommend anyone with m.e go to these appointments, especially people with associated mental illness because there will be things to take away from it, some people more than others and every region will have a different way of doing things. 

  • gemma_09955
    gemma_09955

    Posted

    Thank you to both of you for replying. 

    I am in the uk too, I’m not sure how long the wait is here, I’m in the East Midlands. When I get the appointment through I will definitely go as I am in need of help. I will give it a good try, I just can’t imagine what they could possibly do to help that’s all. I mean for me work is all I am able to do, I get see them doing cbt to give me more energy. It’s worth a try but I’m pessimistic I guess. Glass half empty lol. 

    Thanks again, wishing you both well x

  • philsey
    philsey gemma_09955

    Posted

    Buy the book better recovery from post viral illness. Do everything it says. 

    Philip

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