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boosts welcome, seeking advice for chronic pain and fibromyalgia 

So chances are I’m looking at a fibromyalgia diagnosis, or at least, that’s what my medical team is saying. Which like, I was prepared for and expecting all kinds of other things - but I wasn’t expecting this.

So that leads me to the question: for those who are dealing with fibromyalgia what are some things you have learnt about the diagnosis that you didn’t learn from your doctor? What are some things that you’ve found have *actually* helped you with this? What do you wish you knew earlier on in your diagnosis?

I’ve been reading what I can find on the internet, but I’m really looking for some kind of input written by people with the condition or similar conditions, not shit written by people who don’t have anything similar.

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic I recently learn that SNRI can help with the pain.
Since it's nerve pain.

I used to be on SNRI, and was in a lot less pain until I stopped. I didn't connect it until like 10 years later, because other things were going on too. And I'm looking to go back on SNRI instead of SSRI to help with me pain. 🤞

They also didn't know I had fibro any time I've been prescribed anti depressants

Weed for chronic pain and fibromyalgia 

@eclectic also, if you have access to weed? Go try some out.

I personally had great success with Amnesia Haze specifically.

Weed for chronic pain and fibromyalgia 

@maloki I’m definitely looking into changing my relationship with weed to help. I kinda stopped using it mostly for the last few years out of some guilt bullshit, but like really I know it helps fibromyalgia folks so much and I should be kind to myself about it and just let myself smoke when I’m in pain.

Thanks for the SSRI tip as well, very appreciated.

Weed for chronic pain and fibromyalgia 

@eclectic oh and I don't smoke weed, I find edible are better effect.

Weed for chronic pain and fibromyalgia 

@eclectic differentiate between SSRI and SNRI one has neuropreneohrine (spelling) which is the pain relief part.

re: Weed for chronic pain and fibromyalgia 

@maloki oh whoops! Noted.

I find edibles don't really do much to me somehow, but maybe I should try them again and focus on how the pain.

re: Weed for chronic pain and fibromyalgia 

@eclectic oh yeah I didn't use it to get high at all. Well accidentally once. Also you need to learn how to make the cannabutter to increase the potency.

re: Weed for chronic pain and fibromyalgia 

@maloki I've made cannabutter for years, that one I'm good on

re: Weed for chronic pain and fibromyalgia 

@eclectic good good!

re: Weed for chronic pain and fibromyalgia 

@eclectic I have a great recipe for a gooey brownie like thing, that doesn't require the butter to cool down, if you'd want that recipe to try.

I'll have to translate it from Swedish, or find one written in English.
It's called Swedish Kladdkaka if you want to look it up

re: Weed for chronic pain and fibromyalgia 

@eclectic oh btw! Make cannabutter /ointment. I made mine with coconut oil. Great way to get localized pain relief 😌

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic I think someone else taught me this, but also different heat sources can help differently.
For hands holding a warm cup of drink is great.

Oh, and since it basically causes inflammation in muscle attachments you might occasionally want to use cold instead, this stuff takes a bit of trial and error.

Oh and like localized ointment is good, so like tiger balm at the muscle attachments. You can usually find it where you need it by massaging with a prickly tool (spikey ball or roller), and see which areas get more red.

And you might be sensitive to drafts? 🤔
Actually I don't know what's what anymore. Since I have 3 pain conditions.

fibromyalgia 

@eclectic not fibro myself, just wanna pass on that i hear there is an association with fibro & adhd, and a couple anecdotes of adhd folk having their pain ease a wee bit after starting adhd meds?

it's not a cure, and absolutely not a guarantee to be helpful, just wanted to mention in case you think it's worth looking into.

(i could also send a screenshot of this to a pal with fibro if u want? but they are in a flare right now, so dunno when / if they'll be up for answering.)

fibromyalgia 

@eclectic also not fibro tho it was suspected for a while, but thebibliosphere.tumblr.com has a fuckton of health issues and chronic pain, so they likely have some pain management ideas, and there's sure to be other people who have sent in asks or replied to posts whose blogs might have more of what you need, or who can direct you to that.

(suggest looking at her .com/tagged/chronic+health+tag or .com/search/fibro (tho the search system is a bit bad.))

best of luck!

fibromyalgia 

@eclectic (oh! also caution, there *will* be stories on her blog of medical mistreatment and neglect and general badness. take care!)

re: fibromyalgia 

@certifiedperson ooooo omg yes I love blog and written format always hook me up xD. And if your friend is up for it, feel free to send it. But only if they are interested in sharing, I don't wanna extract labour from someone

And also, thank you for all this! The link between ADHD and fibro is new to me, but as an AuDHD haver I'm intrigued.

re: fibromyalgia 

@eclectic oh same on blog!!

i only heard it once quite some time ago, i'm not sure i saw an actual study so much as someone saying they had found this out and a few others corroborating. So take it with a grain of salt but yeah, it miight be legit.

i will make sure my friend knows there's no pressure/urgency!

re: fibromyalgia 

@eclectic - so apparently their fibro isn't professionally diagnosed ("what are they gonna do? prescribe me painkillers? i hate taking painkillers") but:

- their pain is aggravated by stress (so she figured her anti-anxiety meds probably help things)

- lying on shakti mat seems to help; if pain is affecting sleep it's "really good before bed"

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic Slightly left field but one conmenter with fibro said this site helped them sleep/relax (you can view this and others down the page):
purrli.com/

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic the youtuber shonalika has made three incredible videos on fibro, especially ways to cope with pain, they were very helpful to me and I recommend them heartily

My biggest suggestion to myself keeps being: if you think you could benefit from pain relief meds right now just take meds, don't overthink it or try to do without, there's no need for that

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic warm stuff helps a lot. Baths, hot tea and the like.

Avoid coffee cause it makes your muscles twitch and that leads to pain.

re: boosts welcome, seeking advice for chronic pain and fibromyalgia 

@mxmxyz but I’m so addicted to coffee and it helps me self medicate the ADHD waaaaaaaaahhhhhhh

And yeah, I have been really working on letting myself take pain meds when I need them and not guilting myself about it

boosts welcome, seeking advice for chronic pain and fibromyalgia 

@eclectic@lgbt.io hello! I’ve been dealing with fibro for probs 10 years now, diagnosed 5 or so years ago - for me the #1 trigger for pain and fatigue is stress, and that’s something that took me a real long time to learn, especially cos I was in a job that was pretty stressful. Recognising when something might be triggering a flare and taking steps to reduce that stress - for me, when I can’t change what’s causing stress, things like short walks and short meditations have massively helped with the impact the stress has on my body!

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