Please help! extreme fatigue

Posted , 11 users are following.

Can someone help me shed some light on why I feel so horrendous! I have been suffering with extreme fatigue and exhaustion for about 8/9 months now and its affecting my everyday living. Any exercise makes it worse and takes me 2/3 days to be able to do anything. Im a nurse so have a hectic work schedule and ive been forgetting things and not able to concentrate. I have pain in my muscles and a pins and needle sensation down my back

My eyelid twitches and I have blurred vision.

I have frequent mouth ulcers and water infections so my immune system is affected but ive had tests done including FBC ESR thyroid diabeties anaemia b12 dificiency iron HIV Hep B urine samples and bowel checks as I was diagnosed with IBS last august. All other Tests were normal.

My diet is healthy to accomodate my Ibs and I drink plenty of fluids, take multivitamins daily and no change. Im struggling as my doctors seem to be ignoring everything im saying. I have migranes now and disturbed sleep and my emotions are all over the place. I get irritated easily as exhausted. Some days I cant physically get out of bed or do everyday activites like washing my hair. Im 22 and feel like im 82! If anyone can suggest something to do I would really appriciate it


0 likes, 22 replies

22 Replies

  • Posted

    Hi jess, I'm so sorry you feel so low ,,  you must keep on at you're dr to get some diagnoses , you will hit brick walls trying to get sence out of these drs but eventually you will have help !!! If you have cfs / me or fibromyalgia please don't think it's the end of the world you will feel better I promise !!!!!

    im 52 with fibro & cfs it's hard but there is life after these illnesses !!

    the main thing is try not to panic keep at the drs & change drs if you don't get help 

    with the right medication & other practical help you will get through this 

    hope this helps a little take care. Dawn xxx

    • Posted

      Hi Dawn,

      Thank you so much for replying, feels like no one understands it sometimes. Il keep on at them if needs be I would pay private if it means getting to the bottom of this faster. Thanks again take care xx

    • Posted

      It is par for the course. No one seems to understand, not even our nearest and dearest, not at first anyhow. It is a most upsetting aspect of the fatigue etc. ailments. I think we all have suffered from others not understanding from doctors who fob you off to friends who urge you to buck up (the worst thing you can do). It is very difficult to get a proper diagnosis. Fatigued though you are. you will have to do a lot of the work in getting your GP to exclude all the things it just might be so you are left with CFS/ME

      But you can recover. It is slow but it happens very slowly. I have been free of the horrid suite of symptoms for decades now. I still have to be careful of over exertion.

    • Posted

      Parsnip soup. Love to see your recipe thanks
  • Posted

    hi jessica. i'm so sorry the hear how exhausted you feel, especially in your profession, where u have you be constantly on your toes physically/mentally & emotionally.

    it seems that the standard 'exclusion tests' for the most common conditions have been completed. can u say what the reading was for your b12 ? you can be symptomatic with a 'low normal' b12 reading? also, it's important to know your vitamin D levels?

    do, however, have a read of the criteria for ME/CFS. there's a definitive diagnostic criteria for this condition. have a google of the many criterion: for the UK 1) The Oxford criteria, 2)The Fukuda criteria, 3) the Canadian guidelines (Canada) and 4) The CDC criteria if in the US.

    this may help expand discussion with your Primary Health Care provider.

    good luck


    • Posted

      Hi Caitlin,

      Thanks for replying, my b12 was normal and my vitamin D were normal also (forgot to put that down) . I know they have to rule out possibilities its just hard waiting for an answer. Il have a look at those thankyou so much for your input I really appriciate it

      All the best xx

    • Posted

      hi jessica. i hope u get some insights into what's causing the symptoms soon.

      do u know the actual ''levels'' in ''numbers'' for your b12? GP's often say the levels are ''normal'', if they are just above 200ng/ml. one can have marked neurological symptoms with levels around 400 ng/ml. and different path labs have different reference numbers for ''normal'' levels.

      ideally b12 def. should be diagnosed by the clinical symptoms as the standard test is most unreliable. this test measures ONLY the circulating b12 in your serum, not that the active b12 as in your cells.

      if u work in a hospital, it might be worth your while having an MMA (Methylmalonic Acid) test done together with a Homocycyeine test. the combination gives a much clearer picture of b12 status.

      the MMA measures the ACTIVE levels of b12 in your serum. your GP won't do this one as it's expensive. but u might get a kindly Doc in the hospital to order them for you. this is the least you deserve for the work you do.

      btw, GP's are notoriously under informed about b12 diagnostics & treatment. they consider it an almost extinct disease. it's easily & cheapely treated.


    • Posted

      Thank you Caitlin I will look into it asap your information is so helpful. I really appriciate your help will keep you posted xx
  • Posted

    Are you still working Jessica? If so I would advise you to stop asap. I was working full time and feeling exactly as you described, knowing something was wrong but with doctors saying "we dont know whats wrong". Finally I collapsed at work and after a few days rest in bed at home, googled all my symptoms and then went back to my GP who said "yes, that could be CFS". You describe classic CFS symptoms- especially the post exertional malaise-(takes 3 days to recover).The blood tests they run are often 'normal' in cases of CFS. You could find a local CFS/M.E. group via google and from there find a GP who is CFS/M.E. friendly. Lots of help and advice from people on here too. Hope that helps, the most important thing is to look after yourself and dont let GP's fob you off xx
    • Posted

      ...forgot to say rest is crucial to recovery xx
    • Posted

      Hi thanks for your reply, I am still working and struggling on but I know I will need to take some time off soon as the fatigue its starting to take its toll. Im sorry to hear you had such a bad time, il have a look on the forums and keep pushing gp. Thankyou for your reply hope your well xx
    • Posted

      Bless you, you're very welcome. You sounded so similar to me 18 months ago, prior to being diagnosed, I had to reply. I've accepted it now and have more support bu the early days really are critical for you to get the right treatment (mainly rest as weve been saying). Best of luck to you xx
  • Posted

    Hi Jess

    Sorry to hear you are ill.

    My 19-year-old daughter has ME/CFS .She has had all the regular tests just like you and the Dr's just do not want to commit to saying its ME/CFS. I see her bent up double with pain when she has a water infection etc. and as a parent, I feel helpless seeing her like this. ME/CFS takes no mercy or prisoners it is a terrible illness to have, I have lost count of the time I have been told I look well when I have been dead on my feet with this condition… and feeling like your 90+ is very common feeling.  

    You might have guessed… but I also have ME and I have suffered for 20 years I have lost a couple of great careers because of the illness. Has anybody in your family history had similar, as it can run in families I think?

    You need to stay positive and look for perhaps methods of coping while you are trying to get a doctor to recognize the condition and God only knows how long that can take, but be persistent and change Doctors if needs be.

    Do you have a tropical disease department in a local hospital? These people may be of use to talk to, as many patients they treat have similar pain and fatigue as ME/CFS sufferers have.

    Can you take a career break of a couple of months to rest up fully as the most active of people tend to suffer from ME/CFS (over achievers was the term I was told…) ME/CFS is covered in the Equality 2010 act so employers have to accept you with ME if your diagnosed officially. So do not quit your day job just because of ME/CFS the employer has to make reasonable adjustments for a person with ME/CFS.

    An example of this is my employer has bought me a specialist chair (£700) to sit and work from and provided me with my own office on the ground floor and a “quality” leather recliner for when I need it. They have accepted I have a condition that needs support from them for me to function in the work place. (As a plus I have a lot of collogues wanting to come and have a chat with me and sit in my reclinerJ)

    Most important, rest when you can and don’t try to do too much, as doing so will make you bad for 3-4 days afterwards stay positive and research all you can, I wouldn’t wait for a doctor to come to any decision on ME/CFS you need to steer them in the direction you feel they need to be looking! I have taken print outs to Doctors appointments outlining the condition and left them with them to look through when they have a chance… and this has worked with some Doctors I have seen in the past, as they are busy intelligent people and a “handout” is useful. One Doctor said what is this for? I simply answered I have this 24/7 and as such I have developed an understanding of the condition this is just a few bullet points and info on it… he has turned out to be the most helpful doctor I have seen todate.

    • Posted

      As I read more and more of other people's experiences I realise now that having ME in the days before it was recognised my other ailment  of sarcoidosis gave me a diagnosis that other people could accept even if I knew that sarcoidosis was not the problem.
  • Posted

    Thank you everyone for your support and experiences this has helped me understand my symtoms a lot more many thanks x

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