May - Fibromyalgia Awareness Month

[Ahmyra al'Ruley]

God, thank you for putting into words what I could not!!! All of this. Every bit of it.

 

[Alexr al'Petros]

There are so many of you we want to thank ( @Arella Mathara @Cassie Dainar @Morwynna Raevyn @Tyeslan Al'Monhan @Ahmyra al'Ruley @Adina al'Mari and certainly others that I have missed, sorry) for sharing your journey and helping us understand. Fibromyalgia is such a complex and varied disorder. It's humbling to understand the courage and grace you all exhibit.

As we have learned more about Fibromyalgia, (and as importantly our role in supporting members, family, and friends that may be suffering from this condition), “Spoon Theory” has been referred to. We want to explore this a little bit more with our TVN community. We recognize that it may not necessarily or always be related to Fibromyalgia; but that is the context we will be using for this discussion.

Spoon Theory and Fibromyalgia

Never heard of “Spoon Theory”? The original analogy is to think of a handful of spoons. Each spoon represents the amount of energy one has in their body. Some activities may take two spoons, reducing the number of spoons (or energy) held by two; some tasks may take more or less than that, each task further reducing the number of leftover spoons. Eventually, one runs out of spoons and the body needs rest. This can happen at any point in time.

Or, if one is a Dungeons & Dragon’s player, think of the analogy as spell slots instead of spoons. Every spellcaster has a limited number of spell slots. Some spells take one slot; some spells two spell slots. Eventually, one runs out of spell slots before a short or long rest.

Sources: National Fibromyalgia Association ( https://www.fmaware.org/ ), The Mayo Clinic ( https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780 ).

As we seek to finds way to support those suffering from Fibromyalgia, the Spoon Theory invites discussion and questions. We would like to be very sensitive in this discussion. Please be respectful as we explore questions or YOU ask your own questions regarding Spoon Theory.

• Do you find that you have a particular number of spoons?
• Is it fairly constant, such that you can plan your day or time?
• How do you recover spoons?
• Are there things / activities that tend to use more spoons? Or use spoons faster?
• What other questions should be answered about Spoon Theory?
  
  

 

[Arella Mathara]

Fibromyalgia is a secondary diagnosis in my case but as I very much am a spoonie I'll answer


Do you find that you have a particular number of spoons?
To an extent. I don't have the energy to actively learn stuff like this about myself, and it's very easy to get "false energy" from getting excited etc. I generally know that I can do one major activity a day, or a couple of medium ones. A major activity can be to wash my hair or get caught up on TV.Net work. Smaller activities would be to do laundry (my partner hangs them up and folds them for me). (And no, I am not able to work, or even leave the house except occasionally).

Is it fairly constant, such that you can plan your day or time?
I used to push myself until I literally collapsed, or even got temporarily paralysed, but I know my limits a lot better now. This has made it easier to "plan" the day. In my case it's more that I set a goal, and if my body says no then that becomes tomorrow's goal.

How do you recover spoons?
I do recover some during the night. Having a meal can also keep me going. I also rest a lot. My days are spent lying down for the most part. I am also very sensitive to light and sounds so I have blackout curtains drawn, a sleeping mask, filtered glasses, and noise cancelling headphones that help me rest throughout the day.

Are there things / activities that tend to use more spoons? Or use spoons faster?
As you've probably gathered I don't do a lot of activities but yes, there absolutely is. Anything I have to do standing is a nope. Walking is a nope. Working out/yoga is a nope. Having a meeting with people from the municipality to discuss my condition puts me out for days. Talking to my occupational or physio therapist varies. Having a friend over drains me for days (but is so worth it!). Reading an academic text is a nope. Reading a novel used to be a nope but I can manage shorter ones with an easy plot and few characters now. Audiobooks lets me get through a bit heavier books, especially if I've read it before. So yeah, it definitely varies!

What other questions should be answered about Spoon Theory?
Too tired to think of anything now. Just remember not to compare yourself to others, or others to you. It's not a competition

 

[Polegnyn Nemeara]

Just wanted to thank everyone as well for sharing your experience with Fibromyalgia (and endometriosis. It's a horrible condition as well. My step-sister had to cope with it..). Hopefully focusing on it this month will make us all aware just how important those stickers on our live event badges are and emphasize they are not just decoration

 

[Morwynna Raevyn]

I came across these descriptions of pain a few years ago. They're not a medical description of fibro pain, just some descriptions that someone with fibro came up with and I thought they were excellent. I especially like the Voodoo Doll description as I get that a lot!

Voodoo Doll Pain

Of course, this is not a medical name, nonetheless people with Fibromyalgia know the term ‘knife in the voodoo doll pain’ when used to describe an intense stabbing pain that is felt either in the chest or abdomen and occasionally other regions of the body. The pain is sometimes so intense as to cause a person to double over, making it painful to breathe.

Sparkler Burns​

Similar to pin-pricks of pain, when affected areas are scratched, they can trigger tactile allodynia. Sparkler burns are categorised as a hypersensitivity to pain and touch.

Rattled Nerves​

Dizziness, anxiety, nausea with overall ache throughout the body; can be set off by (MCS) multiple chemical sensitivity.

 

[Cassie Dainar]

• Do you find that you have a particular number of spoons?

It’s not a standard, some days have more, some less, some barely any at all.

• Is it fairly constant, such that you can plan your day or time?

I don’t plan anything in advance any more. I might make a plan for the day, but it usually changes before lunch.

• How do you recover spoons?

Sleep helps, a distraction like my crafting can help as long as it doesn’t end up causing more pain.

• Are there things / activities that tend to use more spoons? Or use spoons faster?

Anything that requires lifting my arms or bending. Washing my hair, folding the wash, and cleaning cat boxes all seem to just drain my spoon reserves.

• What other questions should be answered about Spoon Theory?

The same activity can take a different number of spoons each day. If I slept well and didn’t have to go to work, things may be easier than if I’m tired and in extra pain.

 

[Delara Morellin]

Fibromyalgia isn't my primary diagnosis either (apparently it was on a "buy one, get one free" deal with the M.E.) but hopefully nobody minds me answering these too:

Do you find that you have a particular number of spoons?

Sort of? I can, just about, estimate how much stuff (if anything) I can do in a day depending on how I'm feeling in the morning and after my medication but it's not a set amount that's fixed every day.

Is it fairly constant, such that you can plan your day or time?

To some extent. I can very roughly pencil in things depending on how my symptoms are in general (for example, if I'm in the middle of a Lupus flare I'm not going to schedule in any avoidable activities, even if it's something super exciting like putting that pile of laundry and crafting miscellany that I've been moving from my chair to my bed and back every day for the past month). When I do feel well enough to do things or it's one of those rare, magical days where I might actually leave the house, I have to be very careful to make sure there's nothing planned in for the day after because I'll need at least that to recover.

How do you recover spoons?

Sleep helps, though not as much as you might think and it can be really, really difficult to get to sleep when everything hurts. Having an easy, mindless crafting project to work on or just petting one of the critters is nice as a distraction to stave off the brain squirrels when sleep is hard to find. Other things are just keeping my environment as free from stressors as possible and resting when I need to, even when I don't want to.

Are there things / activities that tend to use more spoons? Or use spoons faster?

Anything involving standing for more than a couple of minutes is going to have me haemorrhaging spoons. Same with anything that has me lifting my arms a lot. Anything involving other people is really draining too, though that's a weird one because I have to force myself to socialise a bit when I'm up to it (& we're talking purely online here, I haven't been well enough to make offline friends in decades) because the alternative is isolation and that's got it's own problems.

What other questions should be answered about Spoon Theory?

One thing to note: the spoons can just disappear at any given time. You can do all the resting and pacing and gentle mindfulness blah de blah in the world but some days are just going to absolutely suck Shai'tan's rancid dingleberries and there is nothing you can do about it. It's one of the reasons I'm not a huge fan of the Spoon Theory in general as I think it can give non-disabled folks the wrong idea that we have some actual, set level of energy and we just need to be sick correctly to make sure we keep it that way. Spoon Theory implies a level of predictability in illness which, if it applies to you fantastic, I can totally see that being helpful but for a lot of us, that isn't there.

 

[Adina al'Mari]

The more we learn about our bodies, the more we're discovering a genetic component. This is from my RL sibling, also a fellow pain person, and a FB convo she had with a friend. I am posting with her permission.

After sharing details about a day spent on medical stuff, a friend commented-

That seems rough. I do worry about you though because you always worry about something new wrong. I’m sure they are valid concerns at least but it’s nonstop and I can just feel your exhaustion! What can be done to improve your health?

To which she replied-

I'm not asking anyone to worry. You seem to have missed the many posts I have made about hypermobility and EDS, or you misunderstand the conditions. I have a connective tissue disorder that is at a genetic level and has no cure. I have only found out about having hEDS in the past year, and rather than causing me worry, it has brought me a lot of peace in knowing how to help gain better functioning.
I have diagnosed anxiety, but I'm the least anxious now than I have been in the last 20 years, in large part because I now know my diagnoses and how to support myself better. And anyway, worry doesn't cause these issues, neither does it help the issue get support. Advocacy and curiosity help, though, and I am living both those things daily.
Please don't ever tell someone with chronic pain and chronic illness that they worry too much. This is hurtful and unsupportive, and it gaslights us in to thinking that we are making things up or that it's in our head, or that we are trying to find things that are wrong. This is not the case. The body is dynamic, and new injuries happen and the body system experiences new allergies, inflammation, etc. I even said that I struggle with gaslighting myself; I don't need anyone else to do that for me.
So, in short, I'm not worrying about new stuff. I am actually experiencing new stuff and/or learning new things about why I have been experiencing pain and related symptoms for most of my life. What I would love is support and empathy, for people to see me in the struggle and know that I am doing my best in difficult situations and in great pain. I want to know I am not alone.
I'm not asking for worry. I'm not asking or wanting pity. I talk about my health to make connection with people, because I refuse to make my social media presence a false image of who I am and what I deal with. I'm comfortable being open about these things, none of which are indication that I am broken or lazy or doing anything wrong. I want to be seen as I am, and I want others to know that I support them in their own suffering.
I am exhausted. It is all valid. And, accurate observation, it is non-stop. It's also all morally neutral, and it isn't something that can be fixed or healed by worrying less, eating well, or praying more. (though symptoms and pain are eased by some external factors and general care of my body. It's never a fix or healing, though. This is my body, beautifully and wonderfully made, faulty connective tissue and alld.
It's also, surprisingly, not really a matter of good health vs bad health. I have wonky connective tissue (which runs through all systems of the body), asthma, a disordered autonomic nervous system (google dysautonomia or POTS if you want more info), ADHD. I don't get sick much at all, though. I eat relatively well, and I am not at a very high weight considering my ability to exercise is limited. Functionality is, I think, a bit different from being in good health and bad health. We wouldn't tell someone otherwise strong and healthy who happens to have a broken arm that they need to work to improve their health.
We wouldn't tell someone with a congenital heart defect (or any congential issue) that they seem to be looking for new symptoms because they worry about it so much. Them being observant of their body as it ages and changes, and seeing new symptoms along the way that need attention, isn't an issue of worry but rather an issue of wisdom and awareness and care that they are practicing for their bodies.
Even if there is stuff to be done to improve my health, that's not why I post these things. That isn't a matter for crowd-sourcing, and I actually don't receive health advice well from people who don't know about my conditions. That's something that me and my care team of 14 doctors and specialists work on together, and we are making really great stride to get me functioning better and having an improved quality of life.
I've spent countless hours education myself about my conditions and symptoms, as well as about anatomy, nutrition, mental health. I have worked to educate myself about my body, the human body, medical studies, ongoing research, and medical systems so that I can advocate for myself and my family. I've put in a lot of time and energy into seeking the care I need, and my kids need, and I won't let that be discounted as seeming like I worry to much. It's not worry, it's fatigue because I am persistent, curious, educated, and ambitious.
All this, and I'm not unhappy, I'm not in despair, I'm not lacking faith, I'm just tired. (side note, literally all of my diagnosed conditions have fatigue and brain fog as a symptoms, so my experience with fatigue and tired brain are clinically understandable. Along with my stuff I am supporting my kids and their needs, too. That means I have nearly 40 patient-doctor relationships I am overseeing.
Anyway, I'm sorry I can't spend more time commenting, and editing my post. I have to shift my energy elsewhere, but needed to advocate for myself and for others with chronic needs to encourage you to please not leave comments like this about us worrying too much or needing to improve our health. Worry isn't causing any of this. Curiousity and advocacy are leading me to new answers and new treatments. Working on improving my health, as it were, is just what I am doing as what typically works for others (eating and exercise) are not adequate for these conditions.
If you want to know more, feel free to look at some of the other posts I have shared about EDS, POTS, ADHD. It's all there, which is why I interpreted that you either misunderstand, haven't taken the chance to read about it before, or think it might be a matter of worrying less, or doing better.