Advice on asking for referral

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I wonder if anyone on this forum can help. I've been back and forth to the doc reporting persistent fatigue and other symptoms which relate to CFS for a few years now (dizziness, IBS type symptoms, aching muscles, unrefreshing sleep, can't handle much exercise, having to reduce amount I am doing etc, taking sick days for sheer exhaustion). I have been prescribed medication for anxiety already a while ago, and recently had a load of blood tests. These came back normal so my doc said it must be psychological and told me to read some books on mindfulness, etc.

This has all left me feeling pretty much like I'm hitting yet another brick wall. No doc has ever mentioned looking into CFS. And no doc has commented on the fact that a few years ago I had vital meningitis (even though I feel maybe this could be connected).

I wonder if anyone on here has any views on whether the doc should consider CFS, and whether I can ask for some kind of referral?

Thanks in advance, Lou

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12 Replies

  • Posted

    I went to Bupa doctor and suggested CFS. I then went to my GP and asked for a referral.

    Also you could change your GP.

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  • Posted

    Hi Lou,

    I expect you have contracted M.E. after the Meningitis, as this is the usual pattern of events - most if not all of us have M.E. after contracting one iilness or another.

    Tell your GP that you are positive that you have M.E and that the pain etc is definitely NOT in your head.

    We M.E sufferers hear this old chestnut over and over again, I'm sure that everyone on this site will agree with me.

    If your GP won't help you with M.E, try to see another GP and get them to refer you to your nearest M.E clinic.  I did this back in 2011, and I was referred to the Portsmouth M.E/CFS clinic and eventually joined the group.  I couldn't always attend the sessions, but when I did, they helped me more than anyone on the planet, and truly did so much for me, even helping me to to get a ground floor flat with amenities for my condition.

    You have to be referred by your GP, so change surgery if no GP at your surgery will help you.  Please don't take 'it's in your mind' from any of them.

    I have had arthritis in my neck since an accident in 1983, and around 2007 I was sent to a group thing which was supposed to help.  I have had pain to my neck since the accident and no amount of talking can help pain, so I left that group as it was useless.  However, the M.E groups are a whole different thing - they tell you how to manage your illness, give you exercises to do to help, if and when you're able, and tell you how to delegate jobs around the home, or how to pace yourself, and this is immensley helpful to M.E.

    I truly hope that you can get the right help and will be able to go to an M.E specialist/therapist and/or group like I did.  It was the best thing I could have done.  Best of luck.  Val  x

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  • Posted

    Don't get hung up on the psychological tag, that just means they don't know the answer and it puts the problem back onto you. I asked a counsellor friend if she thought CBT woulld help me and she immediately replied "No, it's not a behavioural issue".  I'm surprised your doctor didn't consider cfs, particularly as you have had the problem for well over 6 months.  It's worth persuing it as once you have the letter with the diagnosis/clinic appointment on it, it will help with dealings with college/employers. We still don't know what cfs is but is definitely not imagined! If you do have CFS, there is no fighting it and you will have to come to terms with it somehow and make adjustments to your daily life and that's were mindfulness, relaxation etc might help.  Good luck with finding some help, Lou. 
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  • Posted

    They should most definitely consider CFS, you have a lot of the symptoms, and don't listen to them when they say you have anxiety. I've been told that numerous times, and I have a lot of symptoms that vary day to day. I've have a lot of blood work, 2 MRI's, heart tests, they found nothing wrong, so they think it's either post viral syndrome or anxiety. I think it's post viral, because I have the same symptoms as other people who have it also. Ask for a neurologist referall next time you're at the doctor.
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  • Posted

    hi Lou, unfortunately it is usually a case of self diagnosis, I have had cfs for most my adult life, for the last 10 years I have persistently returned to different doctors and specialists. the same gp who told me about 5 years ago that I didn't fit the symptoms of cfs turned around to me about 6 months ago and said "perhaps you should read some books on cfs and see if you think you have that" how she could think I hadn't already done that over the years is beyond me, but there we have it. as others state above, you usually have to tell them you have it rather than waiting to be given the diagnosis. I appreciate that doctors have little to go on with previous lack of research and have to rule out other illnesses first. however, if tests for other illnesses are negative there is no reason for them not to listen to you if you've done your research and believe cfs may well be what you have, they should certainly consider this. it's hard to say what referral you could ask for but I guess it depends on your individual symptoms, I'm currently waiting to see a rheumatologist due to pain, I see him at the end of July, but I didn't have overwhelming pain in earlier years just the last two or three years.
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  • Posted

    Hi Lou,

    There are still many medical proffessionals out there that still do not believe in CFS/ME . Iften these peeps believe psycologcal and refer to mental health of some kind.

    I had this with one Neurologist, yet another said CFS/ME. If you are not happy with a Dr find another. It's your right and health so don't be worried to.

    The only other thing I would mention is that for any dr. to consider CDS/ME diagnosis, that many many tests should be done before to illiminate a great deal of other conditions. Unfortunately this can take time, frustrating and stressful when already dealing with being unwell.

    Good luck x

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  • Posted

    Hi Lou all the above are common in ME/Chronic fatigue syndrome/fibromyalgia. I notice you had meningitis is that right? If so how long ago? You certainly have all the symptoms of what is called Primary POTS, if you did have Meningitis or if you are Hypermobile. If your were or are look up the Beighton Scale. Your body had 2 autonomic nervous systems the sympathetic (fight and flight) and the parasympathetic (rest and digest). When you are well you don't notice them at all but as you feel faint etc for at least 6 months I would go to your neurologist as suggest POTS it means our body is out of balance,

     

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  • Posted

    Your not going mad the doctors are the ones hitting the brick wall it's just arrived in the UK from the USA if the brick wall continues say dysautomnia and look up POTS UK and dysautomnia international good luck!
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  • Posted

    I agree with Val totally, change your doctor if they won't refer you to an ME clinic, in fact I'd change your doctor anyway as you need a GP with an open mind who will help you through what you're going through, not write it of to some obscure nondescript psychological problem.

    If you have got ME/CFS you need support and care from a health professional with your interests at heart ,so I'd ask around locally and it may be worth finding out if there is an ME group nearby who can give you advice on fnding a doctor able to help......

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  • Posted

    Hi, I have been through exactly what you are describing and also had never heard of or been suggested CFS. Having found this forum only last night I went to my GP this morning and just said " I think I have ME or CFS".

    Looking back on my records there was no denying the symptoms. At one point she said " you have had an MRI of the brain " as if this ruled the possibility out yet thanks to the forum I new it meant nothing. 

    After years of Drs trying to label me as depressed and anxious (which I have become due to the illness)

    I finally feel optimistic that I may at least understand why some days I feel drunk/hungover like a brick is in place of my brain.  I am no waiting to see a physician for diagnosis I know it's just a step forward but the weight is lifting. 

    Im 35 and have two children the prospect of living the rest of my days in a fog depressed me so much that I almost rolled up my sleeves when heading in to that gps today.

    Be strong and don't give up

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  • Posted

    Please don't stop the meds the GP gave to you for anxiety right away.

    Wean yourself off them gradually, then don't touch them again.

    You have had viral meningitis-it compromised your whole immune system,so I'd be looking to a consultant in immunology and/or neurology to find your answers.

    Your GP is not helping by giving you meds you don't need.Change your doc.

    Good luck :-)

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  • Posted

    Thank you so much everyone for your support smile

    Really, realy helpful feedback - I will look into these avenues.

    Great that there's a supportive forum for this! 

    xxxx

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