Inside, Outside

I'm a music lover, mental health worker, aspiring baker (and probably still aspiring until my dying day), pet snuggler, wine guzzler, and Cards Against Humanity champion. I was also diagnosed with fibromyalgia in 2014. Here you'll find thoughts, info, conversation, and hopefully a softer place to land. Welcome.

[becausefuckfibro]

Australians with fibromyalgia are specifically excluded from phase 1b of the vaccine rollout, because of fucking course

Edited to add: So as a person with FM, i’m ineligible. But as a support worker for people with FM, I AM eligible. Either there’s an identified vulnerable group and therefore an increased risk, or there isn’t.

[bisexualspoonie-blog]

when we talk about giving disabled roles to disabled actors lets not forget about how these shows or films telling a disabled persons story also need to be hiring disabled writers, consultants, directors and producers because the only way you’re going to be able to successfully tell our stories is if you hire us to help you tell them.

Hiring a disabled actor is a great start but it doesn’t do much good if the writing is ableist and the story isn’t accurate or realistic. Disabled people telling their stories is just as important as disabled people portraying a disabled character.

[becausefuckfibro]

How often, though, is telling our stories the main objective?

Can we count on one hand the number of movies where the focus has been on the person with the lived experience, and not their heroic, sacrificial support person challenging their own entrenched preconceptions and “giving this poor person a voice”?

[becausefuckfibro]

hillyminne: Cymbalta made me get depressed 😑 what’s that other one like?? (In fibro flare right now)

Low Dose Naltrexone (or LDN) is a “competitive opioid receptor antagonist”. At full dose, Naltrexone has been traditionally used in the treatment of drug and alcohol abuse. In low dose form, however (which is one-tenth of the standard naltrexone dose) it is starting to be used off-label in the treatment of fibromyalgia, because of its dual anti-inflammatory effect and endorphin increase (by tricking the endorphin systems to produce more in a rebound effect). (More info on LDN and pain)

As opposed to Cymbalta, LDN is safe and well tolerated with minimal side effects. Insomnia can occur at first, but switching the time of day when the dose is taken can alleviate that. Some have also had weird dreams. There are also no reported interactions with any other drugs thus far.

The trouble people with FM are having, depending on where they live, is getting their healthcare professionals onboard with trying it off-label. My original GP, who was the one who diagnosed me with FM and who had been treating me for years, flatly refused me and said to go to the local drug and alcohol clinic (!). My new one is a bit more open-minded but said she didn’t have an informed opinion in order to prescribe it to me; however, she wrote a letter to my rheumo supporting discussion about it. Yet my rheumo said no as well, made an argument that there’s “really nothing to treat it” except for Lyrica or Cymbalta on the basis of those being the most researched. “Most researched” doesn’t mean “most effective” and even they admitted that there’s minimal benefit shown in those studies.

I pointed out that I learned about it from a client who also has FM along with ME/CFS and they argued that the client would’ve been prescribed LDN for the ME/CFS - that FM isn’t enough to justify it. Welp.

[becausefuckfibro]

The one with me trying to tell my rheumatologist that other, safer treatments exist

[becc1taterambles]

How to not be an arse whilst also considering disabled people during this pandemic. Links to brilliant activists and content creators in the description box

[realsocialskills]

Disability doesn't come with extra time and energy

I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”

This sounds like praise, but it isn’t.

The time disabled people spend working twice as hard as everyone else has to come from somewhere.

There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.

People need rest. People need leisure time. People have lives and needs and can’t do everything.

Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.

Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.

People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.

It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.

[spoondeficit]

Pls

[tuesdayloves]

[ID: A four panel comic of a little girl talking to Santa. The first panel shows her asking for a dragon, the second is Santa asking for something more realistic, the third panel is her asking to be well rested, the fourth shows Santa asking what color she wants her dragon and her replying with the color red. End ID]

[mioxenoblade]

Are people aware that symptoms to disabilities and mental illnesses and stuff dont start when you get diagnosed? That symptoms exist before seeing a doctor? That expecting people to be 100% abled unless they have that diagnosis is incredibly fucked up? If someone is saying there’s something up with them, dont just shrug off until they have a doctors diagnosis, that shits ableist.

[becausefuckfibro]

I got diagnosed five years ago but the symptoms began back in high school. I knew something wasn’t right but getting adults to listen to a teenager about their own lived experience is like pulling teeth. Until a doctor’s authority tells you who and what you are, you’re an anomaly - outside of the context their all-knowing word gives you, everyone is free to create their own narratives about what’s happening to you and why you would want to “bring it on yourself”.

[spoonielols]

[tinyvampire]

me: *does small amount of physical activity*

my legs: *windows xp shut down sound*

[becausefuckfibro]

J Interpers Violence. 2019 Dec 6:886260519888515. doi: 10.1177/0886260519888515. [Epub ahead of print]

Alrighty, we can chuck this study in the bin for the following reasons:

Out of 18,547 subjects who had experienced IPV, 97 went on to develop fibromyalgia. That is 0.52%. This is no basis for "identifying an association". In that small group, correlation still ≠ causation.

This study particularly targeted women who have experienced violence and coercive control. They are shooting fish in a barrel when it comes to stress. Even with the tiny result that goes against the result they wanted, to still claim it as their aha moment is quite the stretch.

Let's talk about male bias in medical research and how not only were men with FM excluded completely from this study, but it pursues the hysteria narrative that has historically filled the gap for women having unexplained symptoms. 

Only a small percentage of people with FM attribute it to trauma and systematic reviews of studies trying to establish links are poor quality. Researchers are just playing chicken-or-egg with it.

FM on the whole is suffering a dearth of meaningful research, leading to the healthcare industry filling the gap with guesses and assumptions that are often critical and cruel, even when they're inferring a trauma link. See point 3. We need and deserve better.

[mrrightandmrbubble]

Needing to be more selfish and spendthrift with my time/energy for my health vs needing to physically show up to things to put all the pieces in place so I can still thrive in key adult areas even when my health is bad

[becausefuckfibro]

I say i’m tired and some smart aleck replies, “You’ve barely done anything! Try living my life for a day, then you’ll know tired.”

Well, 1) Didn’t know this was the Fatigue Olympics, and 2) Okay, but you’re describing exhaustion felt after prolonged exertion, which is one thing. Now switch it around. Start your day feeling just like that, as if you’ve been on your feet for fourteen hours straight, from the second you wake up, before you do anything. Imagine that’s your baseline. Now try to do what you usually do in those fourteen hours that makes you so tired right now. Do that every other day. Yeah.

[charliequinn2772]

[gaeliclady2019]

Not only does Fibro affect the body but it will affect the brain too. As the pain receptors throughout the entire body are linked to the brain by the central nervous system.

[becausefuckfibro]

The NHS has announced the most painful conditions you can have

If you're struggling to cope with one of these, then you're deserving of sympathy

Fibromyalgia is #19 on the list.

[becausefuckfibro]

A new computational method will allow scientists to measure the effects of chronic inflammation on energy availability and effort-based decision-making. The method may yield insights into how chronic, low-grade inflammation contributes to motivational impairments in some cases of depression, schizophrenia and other medical disorders.

While this study intends to put its findings towards developing resources for depression and and behavioural disorders they suspect to be “driven” by inflammation, it underscores much of the experience of living with fibromyalgia and its secondary symptoms.