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ME/CFS Primer for Clinical Practitioners (2014 revision)

19 Aug 14
Megan
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As many of you would be aware, I’ve been struggling a lot lately. Between the process of coming of the Lyrica and an increase in social activities I’ve really overdone it the last few weeks. My doctor is starting to reach the end of his ideas for what we could try to help me manage my symptoms and lifestyle with them. I have begun doing more research into what is out there and what I should be doing. One document I’ve been looking at is the ME/CFS Primer for Clinical Practitioners from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Click to view document

Click to view document

This document outlines the most recent research, diagnostic and treatment options for doctors treating people with ME/CFS. I found it useful to see where research is at, what drugs and other treatments are recommended for management.

It has reminded me that I really need to get back into managing my lifestyle, pacing and learning to say NO to things that aren’t helpful for me.

I have begun doing this with the decision to come off the Lyrica. I’m now about half way through the weaning off process and, although pain has risen slightly and I’m finding I’m having a rough time emotionally right now, I feel this has been a good step for me.

My brain is starting to clear again, while on Lyrica (especially at the higher doses) I was struggling to think at all. Now I find my thinking is back but I’m still struggling with word retrieval and a few other brain fog symptoms.

I am now able to once again feel when my body is saying enough is enough and, even though I haven’t been doing well listening to it so far, this is going to be beneficial as I ramp up the pacing again. On the Lyrica, the sore throat and the increased muscle aches weren’t there and I think that is part of the reason I kept pushing myself to crashing point.

When I see my doctor tomorrow I’ll be discussing the following ideas/problems:

  • Pacing
    • how to best balance pacing with still having quality of life (E is concerned that if I pace too much I’ll be limiting my quality of life)
    • Housework as part of exercise routine
  • Revisiting a nutritionist/naturopath to make sure that my diet is the best it can be for increasing my health and to find out which supplements I should be taking.
  • Emotional support
    • I’m struggling with the lack of control I have at the moment with where my life is heading. I keep getting worried about never being able to start a family because of my health.
  • Getting a referral to another gynecologist for a second opinion on the Pelvic Congestion Syndrome treatment
    • The pain has been increasing for the last month or so and Depo Provera isn’t healthy to remain on long term so I need to find a different treatment option.

If you, or someone you know is suffering from ME/CFS I would definitely recommend taking a look at the Primer above and even sharing it with your doctor/medical professionals.

What treatment options do you use for chronic fatigue or pain?

Do you think this primer would be helpful when talking to your medical team/doctors?

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  1. Claire August 21, 2014 at 11:49 am

    I’m seeing my GP with a similar list of points – things to help me manage, things to help me cope. What’s missing is something that will actually help. As in make me better. As in fix this PLEASE!!
    I can see that you’re doing all you can do – I only wish that there was something more out there.

    • Megan S August 21, 2014 at 4:41 pm

      I completely agree Claire! I’m doing everything I can but feel that I’m not getting very far and struggling a lot at the moment!

  2. Life with Chronic Illness – Pacing and Routine revisited | my chronic life journey August 25, 2014 at 10:46 am

    […] week I discussed how pacing was one of the key recommendations from the International ME/CFS Primer for Clinical Practitioners. As has happened in the past I left my doctors appointment frustrated at the lack of understanding […]

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