May - Fibromyalgia Awareness Month

[Alexr al'Petros]

May is Fibromyalgia Awareness month with May 12th being the official day this chronic condition is highlighted. At Tar Valon.Net, we have community members, family members and dear friends that suffer from this condition. We are bringing awareness to it, so that as a community we can encourage and support. Throughout this month, we will continue to explore and learn about this chronic condition.

What is Fibromyalgia?

Fibromyalgia, aka “fibrositis”, is a chronic pain condition caused by dysregulation in the central nervous system. Sensors in the brain misinterpret signals causing pain to be more intense than in someone who doesn’t suffer from Fibromyalgia. Other symptoms include (but aren’t limited to) fatigue, sleep problems, and other “overlapping” symptoms that mimic other conditions. These “overlapping” conditions include irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud’s Syndrome, neurological symptoms, and impaired coordination.

Do you know any members, family, or friends suffering from this condition? What are you doing or have done to support them? (Please post below in this thread.). We also have some badges and Sigs that you can use to help us heighten awareness.

Spoiler: Signature

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https://imgur.com/M7q4f7A

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Spoiler: Badges

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https://imgur.com/w7bodMC

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https://imgur.com/AC50CVP

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https://imgur.com/HZz89Py

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https://imgur.com/BPaeNzJ

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https://imgur.com/Ro4xH9J

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[Arella Mathara]

My* tips for people who have a fibro patient/chronically ill person in their lives:

1. Listen to them
2. Be patient. Being in constant pain makes you lash out or break down sometimes. It's not fun for anyone
3. Check in on them often but do not get annoyed if they don't reply right away
4. Check in again. Even if you didn't get a reply once or twice
5. Do not try to "fix" them. Unless you are a medical doctor specialised in the relevant field, never try to "help" by telling a sick person what to do. They are most likely doing their best already
6. And don't forget to take care of yourself as well! Put your own mask on first. You can't help if you're struggling yourself 🤎

*I have fibro as a comorbid diagnosis

 

[Cassie Dainar]

100% agree with everything Arella posted. I would add that most people with fibro or any other chronic fatigue or pain condition is often still mourning the loss of the person they used to be. When you go from being able to play sports, walk for hours, and do other physical activities to being too tired or in too much pain to do anything it can be a real mental struggle.

I was diagnosed with fibro about 8 years ago. I still cry inside because of all the things I just can’t do that I used to enjoy so much.

 

[Tyeslan Al'Monhan]

I was diagnosed with Fibro going on 9 years ago now. I live in daily pain that affects everything, and it’s mentally draining, exhausting.

 

[Ahmyra Cova Souvraya]

I was diagnosed only a couple of years ago but darn if it doesn't explain my. whole. life.

I would add to what has been said above that just because someone doesn't look like they are sick doesn't mean they aren't. If I had a dime for every time someone told that me that I am too young to have a disability, I wouldn't have to work. Please, please, please - if some says they can't (or whatever), don't scoff at them. Ask if they have a silent disability.

 

[Morwynna Raevyn]

I miss being able to walk as much as I used to. You don't realise how much you take something for granted until you start having a problem. Then there's the fatigue. I daren't drive for long periods of time anymore. I can feel perfectly fine and awake and then it just hits me and I feel absolutely shattered. I've described it as if I've just gone smack into a brick wall it comes on that quickly and keeping my eyes open is so hard. The fatigue and the brain fog don't help at work either when I have to try and keep myself from falling asleep at my desk.

 

[Ephrem Elpidius]

It truly amazes me with all the advances of science, technology, mapping the entire human genome, mRNA, and the list goes on and on... that we as a species still haven't figured out how to cure people of stuff like this, or thyroid disorders, etc.

Maybe as CRISPR genetic editing gets better and better over the years, issues like this will be a thing of the past, we can hope? I hope... I don't know much about this specific disease.

 

[Adina al'Mari]

I came across this tiktok today, and it does a great job explaining how my pain and the pain scale don't match up. It also gives a good lesson how how the body's nervous systems work.

https://www.tiktok.com/video/7210143991935814954

 

[Ephrem Elpidius]

I came across this tiktok today, and it does a great job explaining how my pain and the pain scale don't match up. It also gives a good lesson how how the body's nervous systems work.

https://www.tiktok.com/video/7210143991935814954

I was about to type I wish I could hug all of you that have this, but then I realized that might cause you pain... sigh...

truly sorry you suffer though, I can't imagine. one of my irl friends has that female only disease called endometriosis... and it hurts her in ways I can't even comprehend. it really frustrates me we have a trillion dollar healthcare system whose only job is to put bandaids on things, instead of investing heavily into RnD to improve lives long term. greed has destroyed our system. if it wasn't for big pharma wanting to be a part of the yacht club members association (yes I made that up to prove a point) we would probably be in a much better place.

 

[Yersinia al'Mycel]

Thank you to everyone sharing their fibro stories, as an endometriosis-haver, I relate a lot to the pain, fatigue, and myriad mystery symptoms really derailing one's life. Not only that, but the maddening process of getting diagnosis and "treatment" for the stupid condition messing up your life. Inivisble illness/disability is a wild west, and you are all bada** for existing in that space.

If you have the space/bandwidth, I'd like to know what the one thing you wish people knew about fibro, specifically is?


As a note re: endo, Ephrem - interestingly, endo has been found in AMAB people. It's not actually endometrial tissue, it's a histologically similar tissue, and it's been found on every organ in the human body! It is very rare in AMAB people, but it has happened! Generally speaking in the endo circles I run in, we generally use less gender specific for that reason, and because while it is typically found in AFAB people, "female only" disease tends to be less inclusive of the non-female people (AMAB, trans, NB, etc) who also have endo. Just a little nuance from the endo space

 

[Ephrem Elpidius]

Thank you to everyone sharing their fibro stories, as an endometriosis-haver, I relate a lot to the pain, fatigue, and myriad mystery symptoms really derailing one's life. Not only that, but the maddening process of getting diagnosis and "treatment" for the stupid condition messing up your life. Inivisble illness/disability is a wild west, and you are all bada** for existing in that space.

If you have the space/bandwidth, I'd like to know what the one thing you wish people knew about fibro, specifically is?


As a note re: endo, Ephrem - interestingly, endo has been found in AMAB people. It's not actually endometrial tissue, it's a histologically similar tissue, and it's been found on every organ in the human body! It is very rare in AMAB people, but it has happened! Generally speaking in the endo circles I run in, we generally use less gender specific for that reason, and because while it is typically found in AFAB people, "female only" disease tends to be less inclusive of the non-female people (AMAB, trans, NB, etc) who also have endo. Just a little nuance from the endo space

thank you for educating me on this matter, I honestly had no idea and just assumed it was a female only issue based on a quick reading of the definition. I have never actually looked into it, my friend has the same complaints that you do regarding being able to get the proper help for it, etc.

I do know that a study was done recently on monkeys that also suffer from endo, and it was hugely successful. Many years of study to go though I expect, as with all things of this nature.

sorry to go off-topic mods, I will bow out now

 

[Arella Mathara]

If you have the space/bandwidth, I'd like to know what the one thing you wish people knew about fibro, specifically is?

Fibro is complex. Pain isn't simply pain, there are a lot of different types of pain associated with fibro. Three of them are:
1. Allodynia: My personal favourite. This is "pain due to a stimulus that does not normally provoke pain". For instance a finger stroking your hand.
2. Paresthesia: "A prickling, tingling, burning, and/or a numbing sensation. These sensations are often accompanied with pain in different parts of the body, including the fingers, toes, hands, and feet." That's pretty self-explanatory?
3. Hyperalgesia: "Increased pain from a stimulus that usually provokes pain". If someone bumps into your arm and it feels like they hit you with great force. Very fun in public. 10/10 recommend.

All this to say that having fibro is difficult and frustrating. If a fibro patient reacts funny it might be a reason for it...

 

[Morwynna Raevyn]

Oh yes, my husband giving me a hug and I flinch, or when he holds my hand and I have to ask him not to. Then if I’m at work and someone shakes my hand and even though they didn’t squeeze my hand it feels like they’ve squashed all my bones together. So. Much. Fun.

 

[Yersinia al'Mycel]

Fibro is complex. Pain isn't simply pain, there are a lot of different types of pain associated with fibro. Three of them are:
1. Allodynia: My personal favourite. This is "pain due to a stimulus that does not normally provoke pain". For instance a finger stroking your hand.
2. Paresthesia: "A prickling, tingling, burning, and/or a numbing sensation. These sensations are often accompanied with pain in different parts of the body, including the fingers, toes, hands, and feet." That's pretty self-explanatory?
3. Hyperalgesia: "Increased pain from a stimulus that usually provokes pain". If someone bumps into your arm and it feels like they hit you with great force. Very fun in public. 10/10 recommend.

All this to say that having fibro is difficult and frustrating. If a fibro patient reacts funny it might be a reason for it...

This is very enlightening - thank you for the explanation! I appreciate you taking the time

 

[Ajailyn Morrivinna]

I'm a it's on the table my rheumatologist suspects but wants to get the RA in control first.. but the temperature/skin sensitivity, other pain issues, no explanation for rashes rashes,ibs... and the fatigue.. hell the fatigue... I think that's the absolute worst... where you have days that a shower takes all your energy

 

[Cassie Dainar]

I read somewhere that anything worth doing is worth doing poorly. No emery for a shower, hit the high points with a washcloth and call it good. Dry shampoo is a god send. And I beg off a lot of things because I just don’t have the energy. So when I skip a group toast at events, it’s not because I don’t like you, it that my body is demanding bed now.

 

[Ajailyn Morrivinna]

I read somewhere that anything worth doing is worth doing poorly. No emery for a shower, hit the high points with a washcloth and call it good. Dry shampoo is a god send. And I beg off a lot of things because I just don’t have the energy. So when I skip a group toast at events, it’s not because I don’t like you, it that my body is demanding bed now.

I've learned.. its ok to sit to shower... its been very helpful.

 

[Elia LePhant]

So much love to everyone. Like Yersinia, my chronic pain and fatigue comes from endo, scoliosis, and a more recent diagnosis of Ehlers-Danlos. I don’t usually tell people about my chronic pain because so many people don’t understand. I fully and sincerely support you all with fibromyalgia.

 

[Alexr al'Petros]

Thank you...HUGE thank you for the courage shown above in posting about your Fibromyalgia journey. The discussion so far, along with the support offered and compassion shared, has been tremendous.

Let's continue to explore, learn, and discuss Fibromyalgia. And so we are sharing an anonymized interview with one of our TVN members regarding this condition.

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From TVN Member:

• What do you wish people knew about Fibromyalgia?

Fibro is invisible, it changes day by day and hour by hour. Just because I could do a thing this morning doesn’t mean I can do it now. And I won’t know what tomorrow will be like until I get there.

• What have you found helpful/not helpful?

The least helpful thing is advice. It’s well meant, but “move more” and “suck it up” are the worst.

• [What are] ways people could support those managing Fibromyalgia? How could I, as someone who isn't experiencing Fibromyalgia, support you? What could I do if I showed up on your doorstep and wanted to help?

Normally I just ask people to keep in mind I may need to sit more, or take a lot of breaks from things. And if I do something half-way, it’s usually because I don’t have the spoons to do it well.

• Do you have a preferred Fibromyalgia-specific research organization we could link to or find more information about this condition?

I get a newsletter from a group but don’t have the link handy. I’ll try to get that later. (And here's the link: Nat'l Fibromyalgia Awareness Association)

• Is there anything you would like to have mentioned?

Maybe explain "Spoon Theory" since we all use that phrase I think.

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Before we open the floor on the discussion of "Spoon Theory" we want to allow a little more time for those that may have some experience with this condition. Please post below answers to the following questions (even if you have already posted; if you can add, teach, or share more - please do so.). We will definitely return to the topic of “Spoon Theory” in a later SOA post this month.

• What do you wish people knew about Fibromyalgia?
• What have you found helpful/not helpful?
• [What are] ways people could support people managing Fibromyalgia?
• How could I, as someone who isn't experiencing Fibromyalgia, support you?
• What could I do if I showed up on your doorstep and wanted to help?
• Do you have a preferred Fibromyalgia-specific research organization we could link to or find more information about this condition?
• Is there anything you would like to have mentioned?

 

[Alexr al'Petros]

We are soon going to explore "Spoon Theory" but we want to share this final post.


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From a member who wishes to remain anonymous:

Have you ever seen the show “Modern Love?” It’s on Amazon, and the third episode is about a woman with bipolar disorder. When I watched that vivacious woman turn around and have her crash, I started crying. I know it was about bipolar, but as a person with daily pain, it was a visually impactful moment where I felt “seen,” because it showed so well what I feel happens in my body. Some days all it takes is a turning around, and I crash, and it’s terrifying because I don’t know when or where it will happen, or how long the cycle will last.

Another visual for you- There is a scene in Disney’s Little Mermaid where she’s singing “Part of Your World” and reaching up through a hole in her treasure room toward the light. Life with pain is exactly like that scene if you swapped her facial expressions for pain, fear, frustration, sadness, panic, terror, and had those creepy eels dragging her further down into the dark. We so desperately want to be above the surface “where the people are,” but somedays the best we can do is keep our eyes on the light. Except that the light hurts us precious, and the last thing we want to do is get into the water because we’re already drowning inside ourselves.

I wish people knew that life with chronic pain means sometimes we lie to your faces and tell you we’re fine because we’re oh so tired of being the constant drag on everyone around us and we desperately want you to believe we’re actually fine even when we’re not.

Don’t tell me I’m “so strong,” or comment about it being a “fight.” I am not going to get better. Ever. That doesn’t mean I “lose the fight,” it simply means it is a thing, and I need to spend my energy surviving, not fighting.

“I can’t, I’m out of spell slots.”

It’s NSAIDs and electrolytes before conversation and morning hugs. It is scalding showers in the dark, countertops full of lotions, potions, oils, and infusions, and ice bags in every size and a heating pad in every room.

Know that I have good days and bad days. Sometimes one right after the other for no apparent reason, or sometimes my good day will turn bad without warning. I need patience and grace. I need quiet and space. Check on me, sure, but don’t keep asking me if I am okay when I am clearly not. Bring me water, bring me snacks. Rub my back a little. Hold my hand.

My brain and my body are linked. If I have a high pain day, especially if there are several in a row, I am going to be depressed. I feel useless, like a burden, like a bad parent. Doesn’t help that some of the pain meds mess with brain chemistry anyway, but I can’t just, I dunno, go outside and walk it off like others might be able to.

It means having your meds with you at all times, because the moment you leave them behind is the moment you’re going to need them. It means having little med stashes- partner’s wallet, parent’s house, your car, your bedroom, because sometimes you can’t even make it down the stairs. It means setting your meds to auto fill so you never run out.

It means trying to get healthy and get into fitness, only for your body to rebel and send you into an eight day pain cycle because you had the audacity to do a five minute arms workout video. It means mystery muscle pulls, tendons that remain inflamed for months, and here, just take more painkillers and it will go away eventually.

Learn where the puke bucket is, and where I keep my meds. Learn massage. Learn comfort foods, bland foods, electrolytes. Learn that sometimes brushing my hair is a little thing you can do for me that can feel too huge to do on my own. It will probably make me cry, because it’s embarrassing to accept, but thank you, I love you.

It means self advocacy, late night research, comparing family notes, second opinions, explanations you don’t want to give, and despite your symptoms, it means sometimes not getting the help or diagnosis you need because “you don’t look sick.” “Your test results are within normal range.” “It just happens sometimes.” “You’re getting older.” “We want you to try this first,” even though you’ve tried x number of other things “first.” “Let’s wait and see.” “Have you even tried losing weight?”

MY normal is not YOUR normal, I feel crazy enough as is, please stop dismissing me. I do not want this attention, and I wouldn’t wish it on anyone.

It means sometimes meals are thaw and eat, or Uber’d in, no matter what the week’s menu claims or what I committed to earlier in the day. It means sometimes the kids are late to school because my pain meds haven’t kicked in yet, and I am unsafe to drive until they do. Sometimes it means I have to sit out of the “fun stuff,” even though it breaks my heart to do so. It means having a partner you just got serious with drive you to work and back every day for three weeks because you’re unable to do it for yourself.

It means being humble, and asking for help even when it’s embarrassing and for something I “should” be able to handle, but just cannot. It is especially a struggle when you have to ask your kids to take care of you, instead of the other way around.

It means sometimes I spend the day in the darkness of my room, not by choice, but because there is LIGHT, and SOUND and SMELLS and everyone wants to be near me all its all simply TOO MUCH when my body is fired up on its own.

It means sometimes my family walk on eggshells around me. They never know what kind of parent I will be that day- quiet? angry? sad? short tempered? It is even more upsetting because I don’t know either, even from one moment to the next, and I live in this body!

If you showed up on my doorstep, and no one else was home, well, I probably wouldn’t answer the door if I didn’t know you were coming. Sorry. I am laying down or distracting myself with mindless entertainment with no plot lines to follow because there is no brain power to do so. My eyes hurt too much to read, my ears ring too much to sleep and so I sit there, coiled somewhere inside myself wishing I could feel nothing instead of everything.

If I knew you were coming over, I’d medicate early, and do my best to fake it. I’ve gotten really good at faking it over the years. I’d be more inclined to suggest sharing conversation over a cuppa than going and doing something physically demanding, but I would be happy you were there.

It means accepting my body as it is, every day, despite there not being any “getting better” in the cards. Doing what I can to care for myself, and those around me, and giving myself grace when I am having a hard time.

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Thanks again to all the contributors for helping us understand and empathize with this complex disorder.