Do I have Chronic Fatigue Syndrome/ME

Without going too much into my past, I'll cut the long story short :)

I've suffered from exhaustion and painful joints for roughly 2 to 3 years. I put my change of exhaustion down to my stress, anxiety levels and low moods due to a past experience, and my joint pain down the Hypermobility - but I feel there's more to it then that.

I've been to my GP many of times for blood tests, then was referred for Physio which diagnosed me with Hypermobility and put me through sessions of acupuncture (which didn't make any difference), to then be referred for an MRI scan, which came back clear. 2 weeks ago I got the 'clear' results from my GP who sat me down and discussed depression with me - I know I suffer from bad anxiety, but this is due to past relationship experience, which cannot be solved with a pill. My GP prescribed me with Fluoxetine which has caused me heavy bleeding ever since and made me more exhausted.

I'm going back in 2 days to ask to come off this tablet, and hopefully start a new route to look at other solutions.

I've researched CFS/ME and the symptoms are spot on to how I feel - constantly feeling unwell and sick, headaches on and off for no reason, join pain without a clear explanation, difficulty with concentration and finding the right words (also suggested dyslexia, but no), on and off abdominal pains (changed contraceptive pill 3 times), difficulty sleeping near enough every night, sensitive to light as I always have to have the main lights off in my office and the blinds half shut, bad balance every now and then, very clumsy and call myself 'butter fingers', struggle with getting into work on time and staying awake at my desk, and uncontrollable body temperature (freezing but clammy feet and hands).

What would people suggest this could be? As I think my GP is running out of options!

13 Replies

  • Hi Georgia.

    If all the symptoms you describe have come on in the last couple of years then something is going on. Have you discussed ME/CFS with your doctor? You could ask if there is a ME clinic he/she could refer you to. They would be able to diagnose whether you have it or not if your doctor isn't sure, but these symptoms could also be due to the stress you've been under.

    Your doctor may be focusing on your anxiety as this is something he can offer treatment for. There is no treatment for ME, only symptom management and you have to learn how to pace yourself. You say the anxiety is due to a past relationship problem. Have you been offered counselling for this as that would really help you to understand and manage your reactions? Feeling anxious all the time will cause the symptoms you list whether or not you have ME.

    Good luck x

  • Hi ME65,

    Thank you for responding. I'm fortunately seeing my GP in the morning, so I'll discuss these options with him and maybe asked to be referred for CBT.

    No, I haven't had counseling for my experiences - I'm trying to treat my new partner as a councilor as he's very understanding and patient due to being my best friend for nearly 3 years before settling down.

    I'll update after my appointment and see what they come up with/which route is next for me.

    Thank you, G X

  • Hi Georgia,

    So glad to hear you now have a supportive partner who listens to you and helps you, but I would still encourage you to have professional counselling so that whatever has happened to you in the past can be fully dealt with and then you will be able to leave it behind where it belongs and not have it affecting your present or future life.

    Good luck with the doctor tomorrow.

    With love x

  • Hi ME65,

    I would love to have CBT Theropy but I just have to wait and try some new things with my Doctor first, then maybe request this further down the line as I feel my past is affecting my present and future very much.

    So, I had my appointment today - no discussion of ME again, just another pill. I've changed now to Amitriptyline 10mg, which is another anti-depressant that he wants to try. Hopefully this won't have any dramatic negative affects. I've had a little read up of the side affects and can't see any internal bleeding as such, as this is my biggest concern for my current medication.

    I'll still convinced it's a ME/CFS diagnoses.

    Pop of the first pill tonight, then off for another journey :) Thank you for you luck and response. I'll come back on here and keep any progress/new routes updated.

    Take care, G X

  • Hi Georgia

    Just had to reply to warn you that the amatriptyline can give you quite a hangover when you first start them. It can take a couple of weeks for your brain to get used to it. I can't take it as I get weird reactions to it but my daughter takes a low dose for pain and it helps with sleep. I take a low dose of nortriptyline which suits me better and I find it really helps reduce my pain levels and helps me sleep. Hope it helps you too :-)

  • Hi Kat,

    Thank you for your responses.

    No I do not take any other drugs apart from my contraception pill and some Protein World weight loss tablets - but these are not life saving :)

    I'm not focusing on taking any anti-depressant pills or doctor appointments until after my holiday. Luckily the internal bleeding has finally, 2 months later, stopped - so I'm feeling like a normal woman for once! Just pushing through and staying positive as I'll be jetting away for 2 weeks in 16 days!!

    I'll keep this page updated with any Doctor updates/the start of my medication when I'm back in July.

    Thanks, take care


  • many of the symptoms for ME / CFS are similar to those of B12 deficiency - so get tested for vitamin B12 deficiency / pernicious anaemia - but make sure the bloods tests include 'active' B12 or holotranscobalamin test, as the B12 serum test has been shown to be inaccurate and only picks up the total amount of B12 in your system.

    Also Homocysteine levels and MMA.

  • Hi Katy,

    Thank you for you response. I've had previous blood tests for anemia and all came back clear, do you recommend possibly going back for more specific blood tests, as I assumed the blood tests I had would show any concerns?

    Also, I'm not starting Amitriptyline until after my holiday in June - I'm going to push myself through the next few weeks and let my body heal itself and hopefully be okay for my holiday as I'd rather not be away for 2 weeks sat miserable next to a pool unable to swim/enjoy myself with my partner.

    Thanks, G X

  • Hi Georgia,

    Just learning this ourselves as my daughter is being tested.

    You need serum B12, but this can give a false high reading which masks the problem, so more specifically 'Active' B12 - although this seems hard to get :(

    We are still fighting to get this, but have had homocysteine test done and waiting the results.

    Daughter's b12 serum came back OK but she has severe fatigue, general pain, numbness, burning and tingling in arms and hands and now a tremor in her right arm.

    Continually reading up on this and it seems that there can be a lot of B12 in the system, but only a portion available for the body to use, so the test that measures active B12 is needed - but not widely available !

    Good luck and enjoy your holiday :) x

  • forgot to add that you may have been tested for iron deficient anaemia, but that it is not the same as B12 defiency / pernicious anaemia... x

  • Hi Katy,

    I hope everything gets sorted with your daughter, it's definitely an exhausting process.

    I'll look into being tested for the above, it sounds like another positive route to go down as my DR's seem to of his a brick wall with me and are now feeding my tablets.

    Thank you, I can't wait :) X

  • Ask him to check your B12 levels to rule out Pernicious Anaemia. I was wrongly diagnosed with PA ten years ago when I was very ill and seemed to recover, then my son died suddenly five years ago and have become ill again, my doctor saw me through a breakdown but my bodily health has got worse so I was finally referred to a neurologist. I saw him on Tuesday this week, he was so kind and after a thorough examination he told me I had CFS brought on by the trauma of losing my son. Initially I was just relieved to know it was finally a diagnosis, then the reality hit me! I am 67 and my hubby is 69 he does everything, cooking, cleaning etc. Now I don't know where to start with this. Up until 10 years ago I was super fit, I had always though I could be fit and healthy again but now I feel defeated. Is there hope for someone my age to recover enough to live a close to normal life? Sorry to have wandered off the thread Georgia G95, have a look on the PAS site for loads of advice, just in case. Take care, hope you find a diagnosis soon, the anxiety of not knowing is so stressful.

  • I had CFS symptoms some years ago after caring for my friend for a year in my home. She has full blown ME (she has been ill since her early 20ies and is in her 30ies now. I was concerned that I had contracted ME somehow by looking after her. I was totally exhausted all the time, couldn't sleep well but in the day all I wanted to do was sleep. I always felt a lot better by the evening and felt more 'normal'. I also became very depressed when we retired and the people were around me were all elderly. I missed our former home where we always had young people staying with us, but I had been unable to keep the house because of finances and because I was too ill to do anything. I had no option but to rest, and rest, and rest! Eventually things began to improve and I am now feeling fine and no longer depressed but it was a long and painful experience over about 5 years. I work as a volunteer with people with ME and I know I never had ME but I definitely had CFS! It's good that I can relate to people who have ME as I understand how awful the exhaustion is and how they feel but I never had the other symptoms. Sadly my young friend is still seriously ill. I just long for the day when there will be a reason for ME and a cure, as I want to see her well and able to enjoy life, as she missed finishing Uni, getting a profession, marrying and having children. She is now house and bed-bound and has no quality of life at all. Sadly I live a long way away from her now and cannot even support her a little.

    All the very best.

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