Advice on broaching the subject of CSF/ME with GP

Posted , 9 users are following.

Hi, just joined the group looking for a bit of advice on how to broach the subject with my GP, I used to be a nurse and don't want to come across as saying 'well I've been reading this etc'

A little back ground. About 5 years ago I had a work related injury where I was attacked by a patient and tore my rotator cuff, which lead to me changing jobs, in the new job I was bullied and as a result started suffering anxiety and depression. It was more or less under control, mood was still low at times and occasional motivational problems but I was managing to take 7-8 hours a week of dance classes, and applied to do a new course at uni.

Then in July of last year my mum died quite suddenly. I had no help from family with the funeral etc and as a result ended up with a small viral infection, sore throat, and flu like symptoms. Since then I am now finding I'm tired even with out real exertion. I've had to cut my 7-8 hours of dance a week to 3-4, spread during the week as following them I'm completely floored for a couple of days, the only way I can describe it is the kind of tiredness that comes after doing a week of nights, and trying to stay awake after them, my eyes can't stay open, walking around the shops, or just making a cup of tea I can feel my eyes closing. Even doing housework, I have to do it in stages because I start aching and feeling exhausted.

Night time sleep is not the best, insomnia some times, finding it difficult to fall and stay asleep, and still being absolutely shattered after getting up that I feel like going back to bed after breakfast.

this has got progressively to this stage over the last 12 months, and is markedly different to how I was before the stress of my mums passing away and the viral infection.

ive started getting increasingly annoying restless legs and arms at night, aching, needing to move them, and then pins and needle/scratching type sensation around the joints (then the next morning feeling like I've run a marathon with the.

general aches in shoulders (not just where I had the injury) frequent headaches (tension?) sinus pains, joint pain in toes, sore and feeling like I want to crack them. paracetamol not really working

gastro upsets acid reflux. Times where I just can't concentrate, and occasionally forgeting something I've just written down. A lot of the time my head feels like I've got the flu.

im already being treated for anxiety and depression still and know that it could be just a exhasibation of this, but the other symptoms seem to point in other ways.

Just worried they will either just think I've been reading to much (very common between health professionals) or they will just pass it off as depression without considering other options.

ive got an appointment in a few weeks for a medicine review, so was thinking of bringing it up then. Do you think it could be CSF and any ideas on how to bring it up without sounding as if I've just read this...

thanks for for reading that long winded description


2 likes, 26 replies

26 Replies

  • Posted

    Hi Simon,

                  I   have been through a difficult time. January I didn't feel well and got a nasty sinus virus. I do tend to build things up in my mind and worry. The congestion in my ears continued so I decided to  go to the docs with this problem. He found I had fluid in the inner ear which I am taking anti biotics. I was a lot happier to know what I had. I also have to remind myself I am now 79 so how fit should I expect to be. Five weeks ago I lost my retriever the last morning still sticks in my mind. I am haunted by her looking at me pleading for help which of course I couldn't offer. So do we expect to be on top of the world at a time like this. So I would suggest you tell the doc how you feel but do not offer your opinion on what you think it is. Thats his job. good luck

  • Posted

    Hi Simon so sorry you are feeling so unwell. No fun is it. And even worse

    Not knowing why you feel so bad with all these symptoms. Does

    Sound like ME, but as someone else has said, other conditions need

    To be ruled out first . I had to take ill health retirement from nursing 19yrs ago

    .was diagnosed with ME 20 yrs ago. It is really hard sometimes

    Dealing with your own health when a,nurse. Well what I should

    Say is difficult dealing with other health care professionals!

    Especially drs. Most of them don't like being told what to do .

    List your symptoms. Time it all and how it has changed or not over

    The time. It will them be up to your dr to do a full blood work up.

    If he does try to fob you off and suggest you have depression

    Don't be afraid to say if you don't think it is that. You certainly do

    Need blood tests Anyway. You know that yourself being a nurse.

    I was fobbed of by GP s and in the end requested I be referred the hospital.

    I saw an endocrinologist who had a special interest in ME. He had

    Many patients and ran his own clinic at the hospital. I also saw

    A professor who specialised in ME. I took part in his research.

    These days yes there are. ME specialists you can be referred to. But you

    Do need to get some basic blood tests done by your GP first. Most

    People with CFS/ME have had an MRI scan at some point to rule

    Out MS. A lot of the symptoms are so similar

    Good luck and I hope you get some answers soon. Just getting a

    Diagnosis makes a huge difference. The not knowing really gets you down.

    Take care

  • Posted

    Thanks everyone for all the replies. Would have replied sooner, but felt sick all day. Hopefully my GP will, consider the idea that it may be something other than just the anxiety/depression. Got an appointment in a couple of weeks, to see my GP, if I wanted it sooner I'd have to see one of her partners, and they are not very accomadating to listening to paitients, plus shes always been my GP and will be easier to speak to her, than any oth the others. 


    • Posted

      Hi There Simon,

      I had CFS/ME for over 18 months to 2 years before I broached it with a doctor. I was assured tht my body and mind were recovering from a very nasty car crash in which I recieved a fractured spine and PTSD symptoms. So, when I finally queried it, I stated that someone I knew had been referred to the CFS/ME service by their GP at a different practice and wondered if I may have the same as my symptoms hadn't got better. He was happy to refer me on.

      On this forum, many people have anxiety and/or depression as well as CFS/ME. Many also have had a virus that has floored them prior to onset and you have also had the traumatic experience of your mother dying suddenly. 

      The extreme pain could be Fibromyalgia, not sure if you have researched this too? For them to feel it is CFS/ME you need to have symptoms for over six months, which you have had. If you are in the uk, then you will "hopefully" be refereed to the CFS?me service, which will again hopefully not be far away. They will need to test your blood for any other potential cause of your symptoms_diabetis being one of them. 

      I appreciate that it may feel that you'll not be taken seriously somehow but, this is your health and that is the most importasnt thing. If your usual GP doesn't seem pro active in this area, see another GP for this issue. You can keep your main GP for other health concerns.

      Please update us on how it pans out when you do see her.

      Best wishes


  • Posted

    Hope she is helpful Simon.try to take it easy and don't push yourself

    Too hard. Take care

  • Posted

    Sorry it's taken so long to reply, finally got to see a GP. Did some bloods, which did show slightly low vit d and Iron, but not really enough in her opinion to cause the symptoms, but she wants to try treatment anyway, for a month, and then if no improvement, will start working towards a referral to a specialist.

    had the medication for 2 weeks now and really not seen any improvement, but will give it the full month, and then see how we are then 


    • Posted

      Hi Simon,

      Sounds like at least you are getting somewhere with gp now. I think vit d takes a while to get levels up and not so sure with iron.

      Which type of specialist will you see?


    • Posted

      Can't remember what she said, but got a feeling it was rhumatology. Bloods were more or less ok, nothing really that would cause the symptoms. Back next wednesday, so will know more then.

      Been feeling really off recently, more exhaustion than usual and lots of aches and what can only be described as tingling prickling sensations across my body at night, 


  • Posted

    Well after 8 months or struggle, It's been decided that it probably is ME/CFS, with also some of the pain symptoms associated with fibro. 

    Been started on 20mg of Amitryptoline at night to help with nerve pain and restless legs, and just started on graded physio therapy.

    Hopefully things may start to improve, as somedays it's getting to be a struggle to even wash pots.

    I was claiming PIP for my mental health issues but now they say I dont need it any more. so theres something else to try and sort out. Will have to rely soley on CAB for help, (family are too caught up in their own lives to offer help normally my mum would have helped, just with the filling in of forms but she passed away about 2 years ago, so litterally on my own, sorry this is a bit self pittying)  as just trying to get through all the things I need to do for it, phone calls, reading through documents for complaints etc, is just mentally draining.


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