Endo & CFS

Hi fellow endo sufferers haven't been on in a long while due to ill health , I myself have been suffering for 6yrs & still not much further on & pain daily is overtaking my life , I also have all symptoms of chronic fatigue syndrome but my doctor refuses to "label" me with this illness even though she says I most defineatly have it, any one else have this problem or any advice thanks

4 Replies

  • Hi Allie,

    Sorry to hear that you are suffering with pain and symptoms of CFS. I too have CFS and Endo.

    They both are horrible conditions and it took me a long time to get the diagnosis for CFS.

    I tried to keep a diary of the symptoms so I could track them over a period of time, including the relapses and used it in discussions with the doctor. Every time I had a relapse or the symptoms worsened I would go back to the doctor so they had it on record. The reason being they could then track how long I had the symptoms and the fact they weren't improving.

    I took my partner into each appointment so he could verify how my symptoms had worsened and how they impacted me on a daily basis. If you are working and have had to make changes at work because of this then I would inform the doctor too.

    Has the doctor suggested taking a full set of blood tests to rule out if the fatigue is caused by anything else? If not I would go back and request this. The reason being in order to get a referral for treatment /assistance with CFS you will have had to have the blood tests taken.

    I know it is hard to even talk to the doctor particularly if they are dismissive. However, I would give it a try and if you are not comfortable doing this with your current doctor is there another one you could see? They seem to be reluctant to make an official diagnosis unless the symptoms have been going on for a while. In my case it took just under a year. Therefore, I found I had to keep going back and telling them things hadn't improved.

    Is there anyone who can go with you to see the doctor and put forward your case on how it is affecting you? I recommend this, I found it hard describing the symptoms and found that by taking my partner in the doctor had to listen to what they said too.

    My CFS Symptoms started over a year ago. I have good and bad days as I am sure we all do. But, I am trying out different things to help improve my energy.

    If you are working and get a diagnosis of CFS, your employer is by law required to make adjustments for you to continue working and the doctor can make recommendations to the employer for you.

    Please don't feel you are on your own, it is a struggle and I wish you all the very best.

  • Diane thank you so much for your reply & advice , I will take on board your advice & will keep being persistent with my GP & take my hubby with me to my apt next week so he can explain better how life is @ home & how my illness is having an impact on him & my kids , as you say it's hard to explain yourself sometimes I just write it down & just hand it to my GP but I feel the 10min apt is clearly not enough time , yea must try & keep a diary of how I feel daily , I start this & then forget to continue , take care & thanks again x

  • CFS usually sets in with us endo girls due to impaired thyroid problems. According to some research around 80% of women with endo also have thyroid issues, hence the tiredness. (If you have the time read my post on the left in the Immune System section about immune boosters). x

  • Hi endo begone thanks for your reply & very interesting information I was not aware of this info & I read the rest of your link a lot of info to take on board a hell of a lot more than my doctor had ever told me or helped me with , thanks x

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