Fibromyalgia and chronic pain management

Emily Kate Stephens (48:24): Obviously one of the big things with fibromyalgia is the fatigue, and some people might just say rest is what you need. What would be your advice in terms of helping those suffering from chronic pain to find restfulness or sleep?

Amy Mooney (48:44): Rest does not equate with doing nothing. It's just doing something that your body is not physically going down that same channel of exertion. So, and it's not necessarily just activity switching. There are a lot of complexities to rest. What rest is, is being able to really use different systems of the body while alleviating stress on the others. So, sometimes people do need deep aggressive rest to quiet their whole system, but then they can slowly move out of it. And if somebody is struggling with a lot of body pain, fibromyalgia, they still have capacity to watch shows or learn certain things, do things cognitively that can be entertaining or distracting. Having moments of distraction is a good thing. Finding a place to be able to separate, even for temporary amounts of time, from what you are, you know, feeling in your body is okay to do. So I think, you know, giving the body permission to how to separate the mind and body temporarily is okay when you are trying to find rest or recuperation. So that's different for people that have post-exertional malaise, because sometimes having cognitive and physical layered on is a different complexity, but for people that have fibromyalgia and are just need physical rest for their body to heal the systems that have been inflamed, and calming the nervous system and quieting the circulatory system is important in patients with fibromyalgia.

Emily Kate Stephens (50:25): Amazing.

Gez Medinger (50:31): So one of the things that I thought was fascinating about what Amy was saying is, which relates to what was saying earlier about teacups, is her golden nuggets, and this theory of the golden nugget is essentially only putting into that teacup the gold, right? There's all sorts of other faff that goes on in life that can fill up that teacup, and if that teacup is going to be full, don't fill it up with the faff, fill it up with the gold, and that's essentially what she's talking about. What I found so brilliant about that metaphor was that it also helps you reframe compromise in the sense that yes, there are all of these things that we can no longer do. Don't place the burden of expectation upon yourself to be able to do them all. Just focus on that golden nugget. Don't worry about anything else, and that's fine. It's fine that the other stuff doesn't get done, because any of those other things that you have to compromise are most likely only an issue in your own head, and I think that's the key thing. Right, we feel like we have to do all this stuff, we have these responsibilities, we have these obligations, and a lot of the time the people around us are much more understanding than sometimes we give them credit for. And some of these things don't have to be done now, they don't have to be done in that way, and just focus on that thing that brings joy to you and the people around you, and that gives you an opportunity to again completely reframe your experience of your complex chronic illness.

Emily Kate Stephens (51:46): Yeah, it's one of the things that I see in a lot of people who end up with these situations. I certainly feel for myself that my illness came out of a sort of burnout, and that was because I was someone who always wanted to do absolutely everything, I'm not necessarily going to say a perfectionist, but I wanted to do absolutely everything, so if I was having friends to dinner, I would want to cook everything from scratch. There were no half measures, there were no shortcuts. I like to iron my sheets, and you know there are

Gez Medinger (52:22): You're one of those,

Emily Kate Stephens (52:24): I'm one of those people, and apparently not everyone irons their sheets, and so in this situation I had to make decisions about if I wanted to see a friend, just invite that friend over for a cup of tea, they don't care if you're not laying on a four course meal, and sometimes I haven't been able to compromise on the sheet thing.

Gez Medinger (52:46): I was about to say that's the one thing that's got to go in the bin, surely just live with the crumpled sheet.

Emily Kate Stephens (52:51): I outsource it now.

Gez Medinger (52:52): Maybe that's wise, and I think that's the lesson from this is what can you outsource, right? Is it really essential that you do all of these things that you used to do, simply because you used to do them, and probably not is the answer.

Emily Kate Stephens (53:04): Yeah, I agree. I always say that I'm so privileged with my illness to have gained access to being able to talk to those kind of people. And what we do in this podcast is try to bring the thoughts of those people to our audience and wrap it in a way that is hopefully useful and accessible, it is reassuring when we talk to these people that there are people operating in this space of complex chronic illness, but I still think they're so few and far between, and so anything that we can do to share their knowledge and put it out to people, because the other thing is that in the US you would need insurance, and I think in the majority of other places, you would have to pay for these kind of services, so it's not something that is necessarily accessible to a large majority of our audience, but there are a lot of online resources. Those people that we have spoken to today have all got some video conversations and some explainer videos, many of them hosted on the Bateman Horne Center website, so do check them out and see if they might be able to help you if you are not able to access that kind of help for yourself. If you're interested in going back and hearing the full episode with Amy Mooney, that was out in September of last year. And remember to like, follow, subscribe, and tell us all your thoughts, please. Gez, thank you so much for joining me once again, and I look forward to our next conversation.

Gez Medinger (54:25): Me too. Looking forward to next time.

Emily Kate Stephens (54:26): Thank you. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on, and how Visible could help you, visit our website at makevisible.com

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