Is it worth seeking a diagnosis?

  • A few years ago, I got the flu. I never really recovered from it. I was constantly tired, but the worst thing was the pain. My (not very good) doctor at the time briefly mentioned post-viral-syndrome, but decided that I was just looking to collect diagnosis and just told me to do yoga and exercise, even though I was in so much pain I often couldn't walk to the toilet. I ignored his advice and got a walking stick, which I still use and has been more helpful than him.

    I basically had to self diagnose, then "bully" my doctor into letting me see the relevant specialist. Surprise surprise, I was diagnosed with hypermobility spectrum disorder and functional neurological disorder.
    I basically had to do the same thing for my mental illnesses, since I was initially badly misdiagnosed. Of course, no one listened, and I had to go through the above process all over again. I had two types of severe depression that was left essentially untreated for years. I also had pretty bad anxiety. At 17, I was also diagnosed with autism.

    I figured that the chronic fatigue I had was due to having five or six disorders that had been undiagnosed and untreated, especially as most of them include fatigue, so I just ignored it. The thing is though, I've now been receiving proper treatment for a while, and everything is improving. The FND is so well managed that I don't get symptoms as long as I keep up with treatment. Other than a few dislocations here and there, the hypermobility related pains have reduced. I no longer fit the criteria for depression (yay), and I barely notice the anxiety.
    The fatigue is still there.

    It looks like ME/CFS.
    My iron levels are okay and I've been tested for Lyme disease.
    I run out of energy quickly, I struggle to do basic tasks. Cooking is exhausting, most of my clothes have holes in them because I hardly ever have the energy to buy new ones. Sitting for too long is tiring, standing for too long is impossible.
    I've mostly learnt not to go over my limits but when I do I crash after and have to spend days recovering.

    But I don't want to go through another process of having my symptoms disbelieved, being talked down to and dismissed, and all that stuff to get a diagnosis that doesn't even have an approved treatment. So if I suspect ME/CFS, and seem to benefit from the same management, is it actually worth getting an official diagnosis, or would it be better to just self diagnose and self manage like I've been doing so far?.

  • Community Moderator

    Hi @Rainbow-Zebra, welcome to the forum. Completely understand your hesitation at going through the process again especially after what you're already been through. Just in case you haven't already seen it on the Emerge website they have a Telehealth Nurse service. Might be helpful to talk it through with them to see what is right for you.

  • @Rainbow-Zebra Hello ..nice to meet you on the forum.

  • @gretch is there anything available for people who can't speak over the phone?

  • Hi @crashdummy nice to meet you too.

  • @Rainbow-Zebra
    Hi and welcome.
    What a great question. It is clear you have complex problems and even if you only had one, ME/CFS diagnosis can be a long, hard exhausting road. Especially because they still diagnose it by ruling out everything else.

    On the pro diagnosis side: it might be worth ruling out everything else. You don't want to be struggling with an undiagnosed debilitating chronic illness if it might do you continuing damage, and might be treatable.

    Also on the pro diagnosis side, it can be a huge relief, the search will be over, and it might be useful to have a specific diagnosis if/when you have future contact with medical people.

    But really, given the struggles so many people have, and that you have experienced, trying to navigate yourself through the process, you might find it best it might be best to sit back and just do some quiet research at your own pace to see if you can find an easy (or easier) way to get properly diagnosed.

    Rather than seeing another doctor for another referral, you can ring the telehealth nurse @gretch gave a link to and hear what their advice is.
    You can take your time looking out for the right doctor that is suitably understanding of ME/CFS and close enough for you to access.
    And in the meantime, you can keep on fine tuning your pacing and and look after your other symptoms.

    We all really needed a way to get diagnosed that didn't make our condition worse! I get so angry that things aren't much better now that they were for me getting diagnosed decades ago.
    Big sympathy that you have had to go through so many hard years and are still not properly diagnosed.

    Best wishes and all good things

  • Community Moderator

    @Rainbow-Zebra that is a really good question and I can follow up to get a better answer for you. As far as I know if the reason is due to energy levels you can ask for the consultation to be split into shorter sessions and select a date and time online.
    I would have to check what other options might be available to make it work for you. Feel free to send me a chat message with more information about what you need and I'll follow up.

  • @Dot thank you.

    There's actually only one doctor I can find in my state who doesn't use outdated/ harmful treatments so I don't have much choice really...

  • @gretch I can't speak to strangers over the phone because I'm autistic so I struggle with auditory processing and finding the right words when speaking out loud. I also get anxious when speaking to strangers which adds to the amount of effort.
    The last time I made a phone call to a stranger was a call to poison control (the person I called for is fine now) and even though the questions were really simple I couldn't understand them properly.
    The national relay service is meant to help with this but they have a really limited number of disabilities that they'll help with, and they exclude people with mine.

    I'd need someone in person to relay all the questions and the only person I have to do that has decided he's tired of me getting new diagnoses. Everyone in my life has decided that I'm only allowed a certain number of conditions and then they stop believing me.

    I just need to be able to talk directly with someone over writing.

    I'm sorry if I sound annoyed, I know it's not your fault, it's just frustrating when I can't access services because of stuff like this.

  • @Rainbow-Zebra Sorry to hear you’re going through this. Sadly it’s the same story we often hear. Trying to get a diagnosis, needing to be believed, and to get an answer. And depending on where you live, if you’re able to have access to an understanding GP or a CFS specialist. If the distance is far away from a city centre, then it’s not an option. I was fortunate to get a diagnosis in the early years of my illness and it’s been invaluable for getting my disability pension, and to some extent some belief from my GP. Such a frustrating and debilitating illness.

  • Community Moderator

    Morning @Rainbow-Zebra No apologies necessary, totally ok to be frustrated. I’ll see what I can find out about access options and get back to you over direct message. Message notifications appear next to the dialogue icon 🗨 at the top of the page.

  • @Glimmer Thank you. I'm close enough to the city, but I'm struggling to find anyone who isn't just going to tell me to exercise more...

  • @gretch Thank you! That looks perfect.

  • Just popping back to say hooray that @gretch is on the case, and best wishes @Rainbow-Zebra

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