How to I approach it?

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Hi. I'm new and I'd really appreciate any help.

I haven't been diagnosed, but a friend suggested I read up on CFS / ME and it seems I have quite a few symptoms. Not all of them, but most.

I know I need help, whether it is CFS or not, but visiting the doctor makes me anxious. I don't want them to think I'm wasting their time. 

How do I approach it? What do I do or say?

I've had depression since I was 18/19 (I get by, I'm happy most of the time), but my symptoms for CFS/ME started in 2014 and are ongoing.

- Fatigue or lack of energy.

- Joint and muscle pain

- Unrefreshing sleep

- Sore throat

- Depression and anxiety.

- Blurred vision.

- Malaise

Thank you smile

 

1 like, 12 replies

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12 Replies

  • Posted

    Greetings Nicohun. How did the symptoms start? Did they follow some event or other?
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    • Posted

      Hello Tidsel. To be honest, I'm not quite sure if something triggered them or not. I had a lot of stress in early/mid 2014, I'm not sure if that had something to do with it.
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  • Posted

    Sorry to say this, but all the symptoms you list sound spot-on for ME/CFS. The first thing you need to do is go to a GP and get complete bloodwork done, to rule out other illnesses. If the results come back negative, you then should see an infectious disease doctor or a rheumatologist with a knowledge of ME/CFS. GP's often do not know about this illness, and as a result can be dismissive or even insulting, implying it's all in your head. It's not! You must stand up for yourself. You are not wasting anyone's time. You owe it to yourself to get a diagnosis. Above all, don't let any doctor fob your symptoms off on depression. After I was diagnosed, I had depression and anxiety, but they were a result of having to deal with ME/CFS. The minute my GP suggested I just needed a vacation (implying it was all in my head), I stopped seeing him and went to a specialist at UCLA. I was diagnosed within 20 minutes. Unfortunately, there is no treatment for ME/CFS, so the best thing you can do is to pace yourself and not push through the fatigue. This can make you a whole lot worse and lessen your chances for a recovery. Right now is a time when your actions can make a big difference in the course of the disease, since you have only had ME/CFS since 2014. What country are you in? If you have any more questions, please do post them. There's a lot of good information on this forum.
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    • Posted

      Hello, Jackie. Thank you for your reply.

      I had an FBC done a few months after the symptoms appeared. Everything was fine with that. That summer, I was referred to physiotherapy because of my joint/muscle pain, but stopped going because he described me as having "weak muscles". 

      I had vaguely heard of ME/CFS, but it wasn't until a friend suggested I read up on it, and the more I read, the more it sounded familiar and relatable. 

      I live in a relatively small town in the UK. Thank you so much for your response, I wasn't expecting anyone to reply so quickly. Thanks again.

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    • Posted

      Hi Nicohun,

      Just wanted to pass on my experience of physio with cfs/me recently, I was told by the physio assigned to me that she couldn't help me fullstop because I have cfs/me. I felt further thwarted by this response. I asked If I could go back to the Pilates that I was given last year but, you're not allowed because you're supposedly well enough to start classes independently. I live in a small town in the UK too but asked my doctor if I could be referred to cfs/me clinic as I'd had symptoms over 6 months. If your 1st doctor isn't forthcoming, ask for a different doctor.usually the cfs/me clinic will ask for specific blood test to be done 1st. All need to be negative.

      Hope this helps

      Beverley

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  • Posted

    Hi nuhocin.

    So sorry to hear of your on-going health issues.

    Have you seen the Doctor at all about any of your suspect symptoms in the past?

    Are you normally anxious about going to Dr or is it that you are anxious about how to aproach this CFS/ME discussion?

    Some doctors are fairly 'with it' where this illness is concerned but my own experience of trying to get help/diagnosis was not a very good one, i'm afraid. But don't be put off - I want to help you not to have to have such a difficult time as I did. it took 9 years from onset of illness to diagnosis; along with distress, tears, frustration, fear and no answers.

    To make a diagnosis the doctor will have to do loads of tests first. There is no test to say you have the illness but rather an ilimination of any other possible causes of your symptoms. These will be mainly blood tests but you may have to have scans, exrays and other procedures depending on what bloods throw up.

    Don't 'pussyfoot'. Get to the point that you suspect you may have CFS/ME, you have done your own research and this is what it points to.

    If blood tests come back 'normal', don't just walk away none the wiser. Ask for further tests, ask for explainations. Persue it.

    If tests DO reveal the presence of another illness then take the treament but don't give up if the treatment prescibed doesn't seem to eradicate the problem. It is possible to have more than one thing going on. In my case it was being of a 'certain age' and having developed type 2 diabetes (which I do think the onset may have been excellerated by having ME: previous tests had not revealed any blood glucose problems) I was also found to be low in vitD (fairly common with ME sufferers)

    Don't get so fed-up with bothering the doctor and with no progress that you give up going back. Persist!  If you think they are not treating you with respect or not listening to you then ask for a second opinion or book to see another doctor yourself.

    If/when they can offer you no satisfactory explaination for your symptoms then you must ask for a referral to a specialist. DEMAND if you need to. Be assertive!

    If you are young and/or you get a diagnosis within the 1st 3 years of illness so able to get support, advice etc on managing the condition the better chance you have of recovery (so is said).

    Don't try and push through and battle against this. If it is ME then it will most likely make it worse if you continue to force yourself to do more than your body is able to cope with. Get plenty of rest, pace yourself - good idea to look up 'pacing' for ME sufferers to see how best to do this. it's really quite difficult to get this right as the effects of exhersion are typically felt 24- 48 hours later. You have to learn what you can do without bringing on a crash later.

    Even if it turns out that you don't have ME (and I hope you don't) it certainly won't hurt to practice these things in the mean-time.

    Also be careful with excercise. Whilst this is considered good for you in nearly all other circumstances it will not improve the wellness of ME suffers generally. Excercise should be done with pacing in mind, starting small with a slow build-up once you are sure you are able to tollerate it.

    And don't beleive the lie that you are wasting Dr's time. You are not - that is their job. Don't accept anything less than the care/concern you would expect if you had a broken leg. Having ME is a bit like trying to roll with 3 wheels on your wagon or not firing on all 4 cylinders.

    Be brave - go see your doctor.

     

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    • Posted

      Hello, Olivetree. Thanks for your response.

      I initially went to my local surgery about my joint pain, and was referred to physiotherapy. Physio didn't really do much, I was still in pain and the therapist simply said it was down to having "weak muscles" and sent me away with exersises to do (I had about 6 sessions of physio). 

      I returned to the doctor and had a blood test done and everything came back ok.

      I'm not normally an anxious person. The main concern is how to approach it. I don't want them to think I've just Googled an illness as a way to obtain medication or get time off work.

      I am a little anxious about tests though. I don't mind x-rays, eyes, blood tests, BPs, etc ... I just don't like being physically examined. I don't know why.

      I used to go to the gym a lot but was always so exhausted for days after. I work in a care home at the moment and it's quite physically demanding, so any free time I get is usually resting and trying to take it easy. 

      I'll brave it and make an appointment. Fingers crossed I don't back out. wink

      Again, thank you so much for your reply. And the analogy about the 3-wheeled wagon....it sums it up to a tee!

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  • Posted

    Wasting their time?  Start thinking about yourself!  This is these doctors' JOB!  Without you they'd be out of business.  Look for a doctor in your area that treats CFS.  It is a diagnosis of exclusion.
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    • Posted

      Hi there. I know I should think about myself, but I don't like to, haha. I don't want sympathy, I just want to feel better.

      I live in the UK, the NHS is already strained as it is. Without me, there's always someone else to take my place. I'll brave it out and see if I can speak to my local GP.

      Thanks for your reply. 

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  • Posted

    Remember, you have been paying taxes into the health service for most of your life. You are entitled.  That is what it is there for.
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  • Posted

    I think we've all been in your position and unfortunately it's up to us to find answers. I think the term "self-diagnosis" is misunderstood, especially by doctors.

    When I was first trying to figure out what was wrong with me after I had what looked like a stroke I researched anywhere I could- from forums and blogs to medical journals. It was on a forum for cfs where someone mentioned ME. I had never heard of it before so went to the ME Association in my area (Ontario, Canada) and asked some questions and they gave me the name of the one doctor here who could diagnose ME.

    It was a 13 month wait but more than worth it. By the time I went I had already been through years of multiple specialists and testing and had ruled out other alternative diagnoses.

    I believe if you Google "ME Association" of wherever you live you should find something. The one that I communicated with sent me some literature on ways to manage it which was helpful while I was waiting for that official diagnosis. By then I was an expert at "managing"!

    One other thing...I think being diagnosed with a mental disorder puts you at a great disadvantage. I have Bipolar Disorder in addition to ME and was generally dismissed because of that. I ended up seeing all my medical reports when I applied for disability and every single one mentioned that as the cause of all my symptoms (as in "it's all in your head").

    You have to fight for yourself. I figured there is not a table somewhere where all my doctors were sitting around discussing what was wrong with me so I had to become my own advocate, the manager of my medical journey.

    I wish you well and hope you'll get some answers!

    Tracey

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  • Posted

    Hi there,

    I have some advice which might be of use to you when visiting your GP and helping to move towards a diagnosis. 

    First and foremost I would recommend keeping a GP visit log yourself - This included visits to the GP, hospital, blood tests. I would write the date, whether it was a blood test/GP visit etc., and the outcome. I found this very helpful when I decided to seek help from a different Doctor - I could just show him my record. 

    I also wrote down all of my symptoms - which ones I suffered from the most, which were the most regular. I'd been told by several doctors that my symptoms were due to depression and anxiety - which I knew they weren't - I went onto the Mind mental health website and printed off the Depression and Anxiety checklist they had on one of their leaflets and I checked which symptoms I'd been suffering with (most of mine were physical) I also highlighted the symptoms I'd experienced since becoming unwell - this showed that I was experiencing low mood but this had only begun since being unwell.  - when I took all of these to my doctor he said that he found it very helpful.

    It's also worth noting that there are several different blood tests when can be carried out. Likely one lot of blood tests, unless it is extremely comprehensive, won't be enough to rule out other possible causes of your symptoms. I had 4 different lots of blood tests before my Doctor told me there was nothing left to be tested for. 

    Best of luck! 

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