Doubting diagnosis

When you are having a real bad time with the fibro does anyone else start doubting the diagnosis and think it has to be something else because you feel so bad. I have been getting new symptoms of late and went back to the GP to check them out. He did blood tests and referred me to a neurologist because I was adamant it was something as well as the CFS/fibro. Am I being over the top? Help appreciated

9 Replies

  • Good morning, no I don't think your been over the top at all. I am sure many have felt the way you do. After 30 years of living with fibro at times i still think they got it wrong. But there is no harm in getting your GP to check or double check if you have concerns. And it sounds like you have a good GP who is willing to do that.

    Take care


  • Hi PatDoyle,

    I agree with Dizzytwo, you should be GP managed, so any new symptoms/problems need to be recorded and checked medically, then if they find something, they can start looking for help.

    Hate the word "treatment", that's what you got at school from teachers when I was there in the 50/60s.. Anyway, it's not right, because 9 times out of 10, they don't treat the problem, just the symptoms.

    If we all had exactly the symptoms, we would all look alike, there would be no brunette/blondes, just manikins. We are all different, thankfully, which means we all have different symptoms/problems, drug tolerance and pain thresholds.

    Only by constantly getting the medical profession to accredit so many different symptoms to Fibro, will we get this horrible thing registered as a disability.

    Well den you, keep checking.

    Hayesider xxx

  • I know how you feel but I think you did the right thing about telling your GP about symptoms that don't seem to 'fit'. I did the same - I told my GP about my muscle twitching and she got some blood tests done, and it turns out that I had very low phosphate levels, and my body can't maintain the correct level of phosphate in my blood which is important for all electrical systems in the body (including keeping the heart beating). So I'm still having more tests to see why this is happening but it could mean I have a problem with my parathyroid. I also got some other symptoms checked out a couple of years ago and had an MRI brain scan, which showed I had a benign tumour on my brain! It's nothing to worry about at this point, but it just goes to show that sometimes it's good to insist on having extra checks on our ailments! It's not always all due to Fibromyalgia. Take care x

  • I don't think your over reacting.You know when you have new things going on with your health. Anytime you feel the gp is wrong stand up for yourself. You may save your LIFE! ! Peck.🐤

  • On very rare occasions during a mega bad falre up, just before I get in to see my GP I think this way but no often. I want to sincerely wish you all the best of luck and please take care of yourself.

    All my hopes and dreams for you


  • I think that I must have most of the Fibro symptoms. One thing that has not been mentioned is the Fibro Fog. This really distresses me so much, especially with my family. I live on my own and when I see my daughter it ends up where she shouts at me that "Oh Mum that is about the tenth time you have said that!! But seriously it is affecting my life completely. Like quite often I completely forget to take my medications - which obviously makes me feel worse. I know with age our memories are not so good but this what I get makes me feel so much worse. The GP is sending me for tests on my memory but yes it is frightening as I live alone.

  • I used to get brain fog really bad, but it has now improved. In my experience it's caused by 3 things:

    1 my body's inability to clear the drug side effects from my system (eg. Nortriptyline, Tramadol etc) which gives me a kind of drug hangover

    2 an imbalance of gut bacteria. I know it sounds rather strange but it has been found that there is a direct correlation between gut and brain. An overgrowth of candida bacteria for example has an effect on our cognitive function in my experience.

    3 Food intolerances. when the gut wall has been compromised (drugs such as ibruprofen/Naproxen do destroy the digestive tract over time) then your body can mistake tiny food proteins that get through the gut wall as foreign invaders and attack them like it would a flu virus, giving you similar symptoms and that includes fatigue and brain fog.

    It's like a rabbit hole - you keep looking and it seems to get deeper and deeper! I've had ME, Lupus and Fibromyalgia, PTSD and now it looks like I also have hyperparathyroidism too, so over the last 12 years I've done a lot of research and tried a lot of things. What's helped me the most (apart from my NHS GP and consultants) is a herbalist/naturapath who knows a lot about diet and natural health. I now have less pain, less brain fog, and I've tested negative for Lupus (it's now completely inactive). Sorry this reply got rather longer than I was expecting! Hope it helps. x

  • At first that is all I could do was think they got the diagnosis wrong. I watched my mother live with this disease for over 30 years and pass with it. I felt not only did I know this disease but I was and am built physically and metaphysically like my father, Down to the bone structure, weak tiny ankles and predisposition to high cholesterol if I'm not careful, where my mother could eat a cheeseburger and fries everyday of her life and she never so much as moved one digit on the cholesterol test (lol that really would get my dad because he was an avid exerciser and health fanatic and my mom was all about smelling the roses, giving things time, hee hee hee i loved that about her. Most loving person you could meet.)

    Anyway, I guess what I'm trying to say is it's completely normal to not believe it, and I think you should listen to your body because you know what your feeling better than anyone else. Whether they are doctors or not. Though just make sure that when everything settles you are in the end doing what you feel is best to take the best care of you. I found with this disease receiving care is an uphill battle. So many things are still unknown, so many things are being discovered and tested, so many people are just now finally finding acknowledgement and help at all.

    So just be well, know there are others out here that care about you and wish you the best, and I hope you can find out and receive the best care and help possible. :)

  • I totally understand what you mean. Following my diagnosis, I continued to get new and worrying symptoms-- mostly neurological. I persisted with my GP because I wanted to make sure MS was ruled out. I too was referred to a neurologist and had an MRI. Thankfully, in my case, MS was ruled out. However, I felt much better knowing for sure it was fibro rather than just accepting it. So no, I don't think you are being over the top at all. Good luck with your appointment.

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