CFS/Fibromyalgia is there a difference??

I was diagnosed in 2010 with CFS/Fibromyalgia during this time I have only seen a rheumatologist, not anyone for CFS! I have been suffering from extreme tiredness for quite a while again and was wondering if there is a difference in the treatment as the symptoms look so alike? in the letter to my GP when I paid out privately for my diagnosis five years ago the Dr said I had CFS but he did not like that term! Could this be why he has never suggested I see someone else, do you think? Any advice would be welcome

2 Replies

  • Hello ,

    Yes there is a major difference between ME - myalgic Encephalomyelitis - and fibromyalgia but one not many Drs are aware of.

    The problem is that in the UK most Drs think that ME is akin to CFS and 'chronic fatigue'.

    Also most Drs see fibromyalgia's overarching symptom as pain.

    So when they meet a patient with both the pain that meets the criteria for Fibro and also has fatigue, they tend to tell the patient that they have both fibro and 'cfs'.

    What these Drs fail to recognise is that fibromyalgia is a syndrome - therefore is a collection of symptoms.

    One of the key symptoms of fibromyalgia is chronic fatigue!

    So just because a patient who meets the pain criteria for fibro also experiences chronic fatigue, does not mean the patient has ME , or 'cfs'!

    Chronic fatigue is part and parcel of fibromyalgia syndrome.

    This being said, some patients do have both myalgic Encephalomyelitis and fibromyalgia.

    But this is not affected by whether the patient experiences chronic fatigue.

    One of the hallmark symptoms of ME is 24-72 hour delayed onset post exertional malaise - that is feeling extremely ill starting 24-72 hours after basic exertion (such as after walking a short distance, or after normal daily living activities depending on how severely affected the person is by the ME) and this is very debilitating, necessitating rest, and this feeling extremely ill which results in extra debility lasts for a period of at least a few days following the onset.

    This is a hallmark symptom of ME but there are a number of specific criteria that have to be met to have ME.

    If you google International Consensus Criteria for myalgic Encephalomyelitis you will find the criteria that can be used to diagnose ME.

    There are other criteria but the other criteria fail to differentiate between chronic fatigue, cfs and ME, all of which are different, so are not as definitive.

    so although a Dr may tell you when you are diagnosed with fibro that you also have 'cfs' this has a likelihood of being inaccurate , or at least does not mean you have ME.

    With fibro, exercise can help pain and does not have adverse effects.

    Whereas with ME, exercise causes major increases in symptoms and makes pain worse, and can cause prolonged disability.

    If you would like to know whether you have ME as well as fibromyalgia or not then you will need to do your own research, as sadly currently in the UK these are not accurately differentiated due to limited understanding and lack of understanding and accurate knowledge of both conditions, but particularly ME.

    The International Consensus Primer for ME is a good place to start reading.

    Also a good resource is Dr Byron Hyde's Little Red Book which can be found via a Google search.

    It is a free PDF but very informative.

    Different management is needed for ME and for FMS , because as k said with ME exercise needs to be avoided as it causes deterioration as does any exertion behind a patient's individual limits, and pacing techniques need to be used to conserve energy.

    Whereas with fibro light exercise can help.

    But again this is not an area

    the NHS would help you with.

    As the NHS would tell you that graded exercise therapy helps so-called 'CFS/ME whereas the reality is that it causes deterioration got all patients with classic ME.

    The discrepancy is caused by the inaccurate NICE guidelines.

    NICE has recently acknowledged that the NICE guidelines need to be changed as they don't meet the needs of people with ME but so far they have not acted on this.

    The ME Association and Tymes Truet are lobbying NICE about this until they act.

    I hope this info helps.

    And hope you find the forum helpful .

    Take care.

    Starbys :-)

  • Thank you so much for your informative reply. I feel much worse when I exercise or just walk! If I go out for an afternoon I will have to rest in bed for two to four days! I had swine flu 6 months before I was diagnosed too, which is why I believe I have CFS? I am asking my GP to refer me to a speciList next time I see her as I want to feel somewhat better after five years!!

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