My First 6 Months of ME/CFS

Long road to diagnosis, First 6 months of ME cfs

It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn't do anything about it. It wasn't very frequent initially.

By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn't help me. They did loads of blood tests and couldn't find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn't.

Background

Let me just set the scene here: I was working full time in a job I absolutely loved. I had a full social life which included hanging out with housemates and my friends from church. It was also a stressful year due to all sorts of external circumstances, including a move into my own flat, an attempted illegal eviction and the loss of my closest friend, but I was making the most of it, enjoyed working and having lots of fun too.

Taking Control Of My Health

I decided to take matters into my own hands. I decided that this undiagnosed pain was simply my body telling me that I needed to get fit and healthy. I wasn't eating too well at that point in life, eating lots of things I should have been avoiding, and I was very overweight. I decided to change my diet to try and improve my health.

I researched food and health issues I knew I had and came up with a diet I thought would be beneficial to my own body. It was very natural and healthy. I later discovered that it was basically something called Paleo. I hadn't heard of it before, but it was great.

I finally started this new lifestyle on the 1 February 2015. Spending the next two months eating clean and doing exercise to lose weight and get fit. Little did I know, I was doing the very thing that would make me worse!

Making Things Worse

I believe that I already had undiagnosed Chronic Fatigue Syndrome and by increasing my exercise and my work load, I actually did more damage. Despite having lost 9kg on my new diet and feeling much better about myself in general, I was getting ill frequently and often had really bad migraines. I started getting really sleepy at work and dosing off by 10am! Not okay.

Realising Something Was Very Wrong

By Easter Sunday I was completely out of it. I had already been in bed for a few days with terrible earache and a horribly sore throat. That's when the shaking started and I knew something was very wrong.

Initial Diagnosis

After another 2 months of doing and redoing blood tests without any clues as to what it could be, it was finally suggested that I might have Post Viral Fatigue Syndrome. I was told it usually goes away after a few weeks, but that in some cases it could last for a few months. I was unhappy with the diagnosis as I knew this was not just fatigue, it was so much more!

I went to Google and was surprised to find that every search result took me to pages about ME/CFS. When I read all the symptoms (there are over 30 common symptoms) I realised that I had almost every one of them! I just never thought they were related. It all started to make sense. I was eventually re-diagnosed with CFS.

Chronic Fatigue Syndrome

Despite the most unfortunate name of this illness, the diagnosis fits my condition perfectly and it has since been confirmed by various people including doctors and psychologists at a Chronic Fatigue Clinic.

By the time I had my confirmation in writing, over 6 months had passed. Unfortunately, this is a very common time frame for diagnosis of ME/CFS as they hope the initial post viral fatigue passes or that they can rule it out by finding something else to diagnose. This is terrible because it means that patients spend the first, crucial months trying to push through and live normally, when they should be resting for a better chance at recovery.

A diagnosis did bring relief, for a while, until I realised there's nothing they can do for me and I was more or less left to manage it on my own. Doctors can prescribe painkillers and antidepressants and they will sometimes refer patients to other specialists for further investigation or confirmation of diagnosis. That's it.

Treatment Options

There is the possibility that Cognitive Behaviour Therapy or Graded Exercise Therapy are prescribed, but neither are a cure and patient recovery rates are below 10% with both of these therapies.

Graded Exercise Therapy has also been known to cause more harm than good.

As a result of much debate and the debunking of the controversial PACE Trials, the NICE guidelines for the treatment of ME/CFS are currently being reviewed. 

I was offered CBT which I attended for 2 years. It did not help me improve, but it did provide some insights and practical advice.

Long road to diagnosis, First 6 months with ME cfs

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Over To You

I'd love to hear your story! Feel free to comment below or contact me. Or click here if you'd like to write a guest post and publish your story on this website.

email chronically hopeful char at gmail dot com
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  • Image says:

    I am an orthodox Muslim suffering from CFS. God bless you for writing this. I loved this observation the most: This is terrible because it means that patients spend the first, crucial months trying to push through and live normally, when they should be resting for a better chance at recovery.

    • Chronically Hopeful says:

      Thank you for reading! I am glad you found this post helpful.
      Unfortunately many doctors don’t understand or even believe our condition, despite most recent scientific evidence that it is very real, so they offer us the wrong advice. This is why it is so important for us to share our experiences and tips so that newly diagnosed patients can find the right information online.

      I hope you are doing okay and have the support you need. Have a great week!

  • Tish Harding says:

    I first realized that ME/CFS was my current correct diagnosis from reading an earlier article you posted on awareness of this syndrome. I was amazed that like you, I had maybe 27 of 30 symptoms.

    My chronic illness started with Lyme Disease. Not one time but over 30 times I’ve been re-infected by tick bites. A few years in, I felt clear of the Lyme, but began to experience fibromyalgia. My doctors agreed that this is a common result of having Lyme Disease.

    At one point I went to an out- of- network (means insurance wouldn’t cover it) Dr. who did extensive blood work and discovered that all I had at the time was Epstein Barr virus. And, that I had had it before.

    This was interesting because it meant that the Lyme bacteria were killed or dormant, and that another illness had occurred with almost identical symptoms. I got over the EB, but of course I contracted Lyme again.

    Now, though I am currently on antibiotics for this year’s first tick-bite-yuck!, I feel like those symptoms are waning, but that the totally disabled state I have been in for the last 4 years has got to be accurately diagnosed as ME/CFS.

    Your description of the extreme pain, migraine like headaches, and completely wiped out for the day after one task. This morning I dared try and clean up the kitchen. Been in bed ever since.

    So to sum up my way too long comment, I always presumed that what I suffer from has been a result of a progressive string of illnesses, some of which are still wrecking havoc in my life. When I learned that you were happily employed, socially well adjusted with church friends and others, and hadn’t had any previous viral illnesses of note, when I found out that ME/CFS can just strike out of the blue to a perfectly well person, it came as a big surprise!

    I have to agree, Char, that without a knowledge of and faith in the Lord of the Universe, Jesus Christ, I’m not at all sure how I would be handling this major shift in my very active life.

    Isaiah 26:3,4 (NKJV)
    3 You will keep him in perfect peace,
    Whose mind is stayed on You,
    Because he trusts in You. 4 Trust in the Lord forever,
    For in YAH, the Lord, is everlasting strength.

    There is no other Name in which to put our trust. He holds our very breath in His hands, and our reward for clinging to and praising that Name through our exhaustion and pain will be great at the end when we see Him as He is.

    Tish Harding

    Footnotes: After writing this reply, I think it would make a good blog post in itself for my friends who find themselves in the same boat. Thank you for the inspiration!

  • Tish Harding says:

    May I re-post your above blog on my church page? We have so many faithful and wonderful believers in our fellowship, but those who are well by nature don’t understand those who are chronically ill.
    I also have a closed group page for the chronically ill in our church. I think it would help them, too, as we have a few different
    illnesses represented.

    Thank you again, and God bless you richly!

    • Hi Tish, thanks for your lovely comments! I will respond properly another time, but just wanted to let you know about the reposting…

      I don’t mind partial reposting, like excerpts or summaries with a link back, but not a complete copy and paste of everything.

      The reason is that Google penalises websites with duplicate content, so please don’t copy the entire post word for word. Thank you!

      Sending hugs

      • Tish Harding says:

        Thanks Charlene. I didn’t know that. I could just list some of the symptoms that ME/CFS produces, and try to raise awareness that this is not just “being tired.”

        No need to feel you have to respond “properly.” I know how much it takes out of me to do the smallest thing. But if you want to, I look very forward to hearing from you.

        Take care & God bless you with whatever you need the most today 🙂

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