Have I got cfs?

Posted , 3 users are following.

hi there so I was put onto this by a friend who knows someone with cfs ill keep it as brief as possible

so for about ten years now probably longer I have suffered with constant tiredness, lack of energy to the point where i can no longer work (and have been off sick multiple times and been fired from jobs for sickness) and where I can barely get out of bed some days

its like a foggy head brain fog when it happens there's no discernable trigger it just happens usually after strenuous work like if i mow the lawn i am wiped out for rest of week. I get regular headaches a lump type of feeling in my stomach. used to think i was just lazy or unfit but the harder i exercised the more I burned out

currently going through tests at doctors all tests come back normal as they usually do just 1 urgent referall to endincrinology unit

just out of my mind trying to find out what it is does any or all this sound like cfs? maybe ill push doctor towards that

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2 Replies

  • Posted

    Hi, I have had CFS for over a decade now and what you're describing sounds very similar to my symptoms.

    I expect by now you know what yr limitations are regarding how much you can do before it triggers the disabling fatigue and other symptoms.

    You didn't mention whether you have other symptoms apart from fatigue and brain fog?

    I would definitely ask yr doctor about CFS and whether they think it's likely.

    I have also now developed Fibromyalgia which also has similar overlapping symptoms. You may want to check that out and see if any of the symptoms are familiar to you.

    I hope you get a diagnosis soon. Ten years is a long time to be living with these symptoms and the sooner you know what you are dealing with the easier it will be for you to manage it. I wish you luck.

  • Posted

    Hi Samuel

    I have been where you are now and it's a living nightmare!

    I was (misdiagnosed) with cfs/me and fibromyalgia(after 10years) 18 years ago. I was totally fit and healthy.

    It took 15 years to be diagnosed with Hypopituitarism after asking my GP for a referral to an Endocrinologist to look at the possibility of Pituitary Damage(caused by a head injury I received in 2002 after falling from a horse and diagnosed at the time with mild concussion and damage to the soft tissues around the top of my spine.

    The first hormone that usually shows up deficient is Adult Growth Hormone, then Thyroxine and then Cortisol.

    I have problems with all the above.

    My Endo told me that many people are given a diagnosis of CFS/ME when in fact they have a Pituitary Problem.

    The symptom you describe of regular headeaches and stomach problems can be related to Low Cortisol. We need Cortisol to stay alive.

    It could be Primary Addisons caused usually by autoimmune disease of the Adrenal glands or Secondary Adrenal Insufficiency caused by a Pituitary problem.

    The "urgent referral" to an Endocrinologist could be related to one or all of the above issues.

    There is a FB group called UK Addisons and AI Support and Info Group...it's a good place to join because thousands of people on there spent years very very poorly before they were able to get a diagnosis/treatment of either Primary Addisons or Secondary Adrenal Insufficiency.

    I hope this helps

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