I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!
Sep 17, 2018 | Posted by Zeraph
CFS/ME isn’t typically seen as a pain disorder because the fatigue aspect is so much more disabling. But many people do have pain to varying degrees.
My CFS/ME pain is mostly in my limbs and joints. I also have pain from other, non-CFS/ME problems.
When I’m in pain, I don’t manage my CFS/ME very well.
I am restless; I move too much. I try to distract myself. I don’t sleep as well.
Pain is fatiguing, and it can make other CFS/ME symptoms much worse if it gets out of control.
So what can you do to manage pain effectively when you have CFS/ME?
After having CFS/ME pain for five years, I’ve discovered 3 key tips for dealing with pain:
Here’s some more information on each of these points.
Triggers are anything that causes pain to start or to get worse. Avoiding triggers is the best method of pain relief.
Sometimes it’s not clear what the trigger is. This is one reason it can be helpful to use tools to track your pain, like a daily, simple hour-by-hour diary.
The Hourly Diary
The hourly diary is recommended by Martha E. Kilcoyne in her book, Defeat Chronic Fatigue Syndrome: You Don’t Have to Live With It (available from Amazon). She recommends making a short note every hour describing what you are doing and how you feel.
For me, diarykeeping was useful in understanding patterns that I previously just didn’t notice, even though I felt like I was pretty aware. For example, I noticed that I have an increase in pain and fatigue every afternoon and that my fatigue from exertion can be delayed as much as two or three days. As Kilcoyne explains, the diary can be as simple as one or two words per hour, so it is an accessible tool for some severely affected patients as well.
If holding writing implements is difficult for you (like it is for me) you can use a digital tool like a smartphone diary — I like an app called Day One.
Or, try one of these: 24 Of The Best Chronic Pain Apps And Trackers
For me, my top triggers are dairy, sugar, overuse of muscles, and lying down in “crunched-up” or curled position.
Start treating at the first glimmer of pain! Treat the pain adequately, not just a little bit.
Don’t try to push through pain for any length of time — it WILL get worse.
When you have CFS/ME, it’s important not to let pain slide. Often, pain comes on mildly and intensifies over time. If you wait until it’s intense, it’s probably too late to treat it well or prevent it from impacting your other symptoms.
Good pain relief often involves more than one modality or method. After all, pain is a complex, bodywide experience that affects us in many ways!
I conducted a poll in one of my CFS/ME support groups to see what pain relief methods CFS/ME patients found most successful. Here are the top 10:
There’s no need to wait to administer pain relief— I go ahead and use all my safe available modalities right away, as long as they are OK to use together. (Of course, be cautious around opiods and any other dependency-forming substances, or substances that may affect your ability to conduct yourself safely.)
If you aren’t mentally competent to determine what medicines to take or how much to take, it is crucial to get help from a responsible person or medical professional. People with CFS/ME during flares can become too confused to correctly self-administer medication, so be aware of your mental state and get help as needed.
I find it helpful to list all the things I can do for pain, so that i can refer to the list later when I am in pain and unable to process or brainstorm clearly.
What do you find helpful for treating pain?
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