Undiagnosed CFS/ME

I'm on a mission to find out if I have ME. I started with weakness in my legs and tiredness. I realised everyday I was waking up with a stiff neck and the stiffness seemed to decrease with my other symptoms including nausea, headaches, claims sweats , heavy slow breathing. Several doctors have said it's just a viral.infection but I'm not convinced. I had campylobacter at Xmas and had several antibiotics for other issues up until April this year. I can sleep for hours and hours yet I have had a couple of days over the last month where I felt normal and managed to cook a dinner and go to the shops. It's so strange and frustrating. Is anyone else familiar with my experience? How did you get around your GPS advise of a viral infection? I'm now at the point where my patience is being tested and I'm getting upset hence the reason for this post. Thanks in advance to anyone that replies x

8 Replies

  • Hello. I hope you are getting on with your mission. I might be able to help you. I belong to MESiG and we support people with ME in South Wales and beyond to get a diagnosis and to get advice. Talk later if you want to. Just going out now. Miriam

  • Hi, I too am trying to get a definite diagnosis. I have for years sufferd with draining tiredness after a virus. I have muscle twinges in my legs, they feel heavy and the only way I can describe it is they don't want to work!

    It started 15yrs ago after a particularly sever bout of shingles, so the doctors diagnosed it as post viral fatigue. I had no reason to think any differently and accepted it. It took me about 6mths to get back to part time working and another 6mths to be able to work full time, but I wasn't the same.

    Over the years I've had several relapses requiring me to cut my working hours. I cannot work an 8hr day, if I do I suffer. In April this year (1st!) I came down with flu and have not returned to full health since. This time I have been assertive in my quest for a proper diagnosis. I have had every blood test under the sun, nothing found, not even any inflammatory markers, so why do my joints ache so?

    I have been reffered to the CFS/ME clinic and I am awaiting an appointment. I received a letter approximately 10 weeks ago saying I should receive an appointment within 20 weeks (not necessarily be seen in 20wks).

    At the moment I am trying to work 2-3 mornings a week, I have to live. My own home suffers as I then don't have the energy for other things.

    I just want to be diagnosed, not to feel like I'm going mad or it's all in my head. I want someone to give me the tools to help myself.

  • Yes plz. I don't trust docs when they can't diagnose something. I genuinely feel there is something else going on and waiting months and months or even years doesn't sit too well with me. The thought of living with this fills me with fear as I'm always active.

    All advise is greatly received.


  • sorry for all your woes,insist on your gp refers you to a specialist!a retiring gp once told me that if they don't have a clue what is wrong with you,they call it a virus in the hope it will go away!,even though I do not know you ,my thoughts and prayers are with you!god bless you!!!

  • Sadly there is no cure. It took my GP over a year and every blood test known to man to finally diagnose my chronic fatigue or ME. Through now fault of my own (other than bullying and abuse), I was driven into the ground, even then the bullying and abuse never stopped, just being called a lazy bitch - that is what you call family. So in my view, do what you can, but don't over do it, even when you feel you can, try a little more each week/month, but it you need to rest - rest. Feel positive when you get through what you have, and very slowly build up your strength both mentally and physically. This is a very slow process, but the only one as there is no magic pill, there is no pill at all.

  • Have sent you a private message. Miriam

  • Stage a sit in at your doctor's appointment. Request a full barrage of blood tests which - if they all come back normal - request a referral to a local M.E. clinic. It may be a long wait (i have AT LEAST a 6 month wait) but at least you get some answers

  • October of 2015 I contracted the flu after having the flu vaccine two weeks prior. Did not return back to work for 3 weeks and ended up having a medical meltdown while I was there. Left work and had my husband take me to emergency (one of 3 visits and never found anything wrong) where my Odessy began and has lasted for the last year. I knew something was wrong having experienced the same symptoms as you had and many others. My GP, a neurologist and a general internist diagnosed me with post viral syndrome, but as time went on I began to question that - especially when I hit the 6 month mark. It took a lot of my own investigating, and pushing to see 2 other internist who finally listened and believed in this disease to finally confirm my suspicions! Also had an MRI on my brain and a lot of bloodwork to rule other things out. This only happened a month ago. I started thinking it was all in my head and tried to live my life but that only set me up for a roller coaster of bearable days to bad days and spending a lot of time sleeping. I felt as though overnight, someone had taken my awesome body and had given me a broken one in return! Don't give up. Research a lot!! Find a doctor who will listen!

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