ME/CFS - how long does it take to get a diagnosis?

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My doctor has suggested that I may have Chronic Fatigue Syndrome and has done many tests to rule this out but she still hasn't given me an official diagnosis.

My fatigue came on gradually - really over a couple of years if I think about it. I had a very emotionally stressful 2017 that contributed, I think. I was going to school full time and had to move because of a break-up. Then I was working part-time. My part-time job had a 2 hour commute, so I quit that, thinking it would help the fatigue, but my fatigue just got worse. I am unable to work and functioning "normally" a couple hours a day, and I don't know when my battery will get unplugged and I need to lay down.

Tests show that I don't have chronic inflammation or diabetes or lupus or any infection they can find. Thyroid is mostly normal. Tried quitting caffeine and taking vitamins.

I haven't worked in 7 months and feel in a weird limbo. I wish I knew what I was dealing with. My doctor won't help me get state disability insurance (California). The place I'm living will be sold, so have to move. I've been researching ME/CFS, but not sure I have it.

Long story - my question - how long did it take you to get a diagnosis?

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11 Replies

  • Posted

    For me, it was over a course of 5 years; The key is getting a doctor who is very supportive, helpful and open-minded. My doctor quickly gave me a battery of tests (autoimmune & all), with the exception of my thyroid (resolved on its own and was probably pregnancy related), everything came back clear. I DID test positive for exposure to active epstein barr, which is said to be associated. It was difficult to diagnose me because I have suffered from lifelong anemia and have to get regular IV iron infusions to be normal; However, that does NOT relieve the extreme exhausted that I feel. That was when my doctor felt moved to make the diagnosis.

    I hope you find a doctor that is willing to consider it, since a lot of doctors won't be jump to help for fear of malpractice lawsuits (but they won't tell you that ☹)

    wishing you gentle hugs along your journey to a diagnosis ♥

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  • Posted

    I have been waiting years for a diagnoses. I first presented with fatigue to my doctor in 2005. i managed to keep working as a roofer for another 10 yrs but had to give it up because i couldn't handle the fatigue and pain. My doctor has said that i have either CFS or Fibromyalgia, but stated he cannot give me a definitive answer as there are no tests for either. Meanwhile i live from day to day on benefits and am no closer to a diagnosis.

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  • Posted

    Hi Grayseal, I'm not sure about the US but in the UK there is some guidance ( an organization called NICE) that says 4 months with all other possibilities ruled out by blood tests.

    The problem here is that many doctors don't really believe that cfs is a real illness and so won't commit to giving a diagnosis. I've spoken to a few doctors who very deliberately go quiet if you mention cfs because they just don't want to go down that road.

    I suppose you could ask your doctor straight out what he/she thinks about it. Good luck.

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    • Posted

      Hi James, i live in Scotland and know all about the NICE guidelines. However i still do not have that definitive diagnosis

      I self manage my symptoms as my doctor has subscribed both gabapentine and pregabalin for my aches and pains but neither work for me.

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  • Posted

    Thanks Noj and James,

    It helps to know that what im experiencing isn't unusual, that im not managing my care wrong somehow. Doctors are just reluctant and not enough is known about ME/CFS.

    Sugarbaby, look forward to your response 😃

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  • Posted

    I've been sick since I was younger. I can't honestly tell anyone when the cfs started because I've had so many tests and diagnosis about other things that I don't know if the issues I had was that or if it was cfs. All I can tell you is that over the years the symptoms they kept trying to fix such as fatigue never went away with any treatments but got worse over time. I'm 35 now and I struggle with my daily life which really sucks when your a mother of 4 and the little ones look to you for support. I've been going to doctors since I was 9 and if i have learned anything from all my experiences with doctors (which is a lot) is if you have a doctor that isn't listening to you get a diffrent one. This can be a tricky thing to do because you don't want to dismiss a doctor that might actually be right about what's wrong with you and you just don't agree, but I've become extremely good at doing whatever crazy tests they want without hesitation to prove to them I don't want to be here anymore then them but I'm willing to do whatever it takes. If you see they aren't being as serious about helping you get better as you are then it's time to look for a new doctor.

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  • Posted

    Hi there,

    It really does depend on where you live. where I am in the UK you need 6 months of symptoms, or did when I was diagnosed. you need to have normal results on blood tests and then can be referred to a cfs/me specialist clinic, like I was, where a specialist nurse will go through an assessment process with you and a care plan looked at to help you specifically with your symptoms. There is a waiting list for the service. There aren't so many of them in the country and I had to travel a couple of hours to mine.

    check with a doctor if you have such a service nearby or ask for the diagnosis protacol for cfs/me in your area.


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  • Posted

    I’m so sorry for your issues, but you aren’t alone — we all have those same challenges. I find it interesting that your doctor tested you to rule out ME/CFS, as there aren't any definitive tests available to rule that out, especially here in the US — I'm in Nashville. In most every case they test you — as they did me — for everything known that they could definitively rule out.

    I found the following information via a YouTube webinar back in December. If you go to YouTube and enter: ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study you will be able to view it. I forwarded the link to my Neurologist and his associates to give them a better understanding of the science, current research and symptoms.

    Dr. Jarred Younger gives a presentation of his new research findings that indicate brain inflammation plays a significant role in the pathophysiology of ME/CFS. With pilot funding from SMCI’s Ramsay Award Program, Dr. Younger used a non-invasive imaging technique to measure temperature and other brain chemistry indicators in individuals with ME/CFS and control subjects. The results showed distinctly elevated brain temperature, indicative of inflammation, in patients.

    I highly, HIGHLY recommend watching it with family members, and send it to your Doctors to help them understand more clearly the scope of the disease.

    The involvement of brain inflammation in the development and progression of ME/CFS has long been an area of interest, but there has been a lack of direct evidence to support the connection. This seminal study further validates that neuroinflammation is occurring in ME/CFS patients and has the potential to point the way to an objective marker and effective medical treatments.

    Dr. Younger and his co-authors completed a neuroimaging study of a female cohort of 15 individuals with ME/CFS (who met a modified Fukuda case definition) and 15 age-matched healthy controls using magnetic resonance spectroscopy (MRS).

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  • Posted

    Hi Dono,

    You are correct - my doctor is doing tests to rule out OTHER causes of fatigue - diabetes, lupus, infection, heart disease. There is no test for ME/CFS. According to labs I'm perfectly healthy.

    I watched that video you recommended and it was fantastic! That is so exciting and hopeful! If Dr Younger could show that inflammation of the brain was a common trait... a possible diagnostic tool and possible treatments are on the way, though years down the road.

    This is why I'm here searching for answers. It gives me hope to see progress being made in research and is validating to hear from people who are dealing with similar issues.

    Thanks so much 😃

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