#Medications for fibromyalgia

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[kittycommitte]

@spoonie-living

[painedandconfusedsblog]

I don’t know who needs to hear it but it is not a moral failing if you are doing all that you can to relieve pain yet are not making a dent. It’s not your fault. Your pain is not your fault. Relief isn’t happening because your pain is mighty and under treated. Not because you aren’t trying hard enough. Your pain is not your fault.

[lupusbaby]

Sorry to rant again but my mom keeps going on about how the meds I have to be on to be able to walk are “so addictive” and I “really need to be careful with that stuff” and can we please stop making people feel guilty for taking medications?

Before I got my diagnosis it was, “well if it is autoimmune, you can’t take the meds because they give you cancer”. Guess what?? My diagnosis ended up meaning that if I DON’T take those medications I will live in excruciating pain and die early.

Do you think I really like taking all these meds? The ones that increase my risk of developing all kinds of harmful secondary conditions? The ones that make it so I could potentially die from a usually harmless infection because I’m immunocompromised?

It’s between being “addicted” to Gabapentin or being able to walk, Mom.

[rollingblakely]

My new chair is here and I’m pretty sure this is the most comfortable I’ve been since birth. 😂 Bubba approves, too! I was able to make dinner, load the dishwasher, and restock the fridge/freezer independently! The zero gravity tilt has helped a lot with the pain in my back + pelvic girdle. Gratitude doesn’t feel like a big enough words for how I feel. This is my 4th chair within the last two years and I actually feel like this one is mine. Like it’s a true extension of my body; we are one. I love her and am so grateful to have her. ❤️ I have not found a name yet so I’m open to any suggestions you may have, or tips/accessory suggestions too!

[chronicillnesshumor]

[justsomerandomgay]

i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

[dizzy1ife]

when the effects of a medical condition are also the triggers for that medical condition

[hellyeahsickaf]

The way addicts and chronically ill people are dehumanized is so exhausting

The normalization of this shit in medical and casual settings is genuinely mind boggling. Addicts and disabled people go through so much bullshit. I've dealt with many fucked up doctors when I just needed help

I had a kidney infection, some months back. This is always extremely medically urgent, and I was likely only hours from sepsis. I went to the hospital reporting my pain to be a 9/10. 9 because my 10 was gallstones. I experienced severe malpractice at the hospital and the doctor reported exams that never occured and false information while making me wait with nothing more than tylenol to hold me over (didn't touch the pain) and bring my fever down but that's a whole other story

They did however, deny me the pain medication I needed until it was time to go home. I'm deathly allergic to NSAIDS, but that's something an addict might say so they witheld pain relief because they'd rather me suffer just in case I'm a different kind of sick. An entire night, maybe 6 hours in the ER and they couldn't give me anything, not a small dose of morphine or one norco even a few hours prior to take the edge off of the pain while I was curled up shaking and crying. Just in case I was an addict looking for my fix, and my suffering was just withdrawals and good acting. In that case maybe I deserved it and should be denied my humanity. God forbid in that case I'm so desperate to alleviate unbearable withdrawals that I spend all night in the ER crying. Not the first time I've experienced red tape just to get relief from excruciating pain

But whatever. As per protocol I was asked to follow up with my pcp. So a few days later I called to set an appointment, but I'd also run out of norco and desperate to relieve the pain I asked if I could be filled even enough for a few days, until the pain was bearable. I had difficulty walking, laying down, and I again, can't take most pain relievers. The receptionist was nice and understanding, actually got me in touch with the doctor because she wanted me to be able to get my refill. Probably heard the pain in my voice even. She believed me

She transfers me over to the doctor and I tell him I'd like a follow up and ask if he could fill my painkillers. I would've acceped a no from him, I just needed my follow up. He asked about my condition, I told him my diagnosis and how much pain I was in

And he laughed.

Got a real hoot out of it, like he had me all figured out. Like he caught me trying to cheat the system. I must be trying to get high or make some money with a few days worth of norco as i'm nearly in tears from the pain even while calling

He tells me through his laughter "I don't prescribe painkillers for 'kidney infections'" saying it with a mocking emphasis on those words, as if I'd said "stubbed toe". Follows with "Yeah haha, bye." and hangs up on me. No follow up like I called for. Needless to say I no longer have a pcp but truly if he thought I was an addict trying to take advantage of him he should have still treated me professionally. Maybe not cackled when I said my pain was excruciating for a start

I just don't understand why the hell so many doctors can be so apathetic to people's suffering. Addicts deserve better and so do disabled people- whether you think they're addicts or not. The assumption that we're lying, trying to trick them and are feigning pain to do it is disgusting, listening to your patients is so important. And if that were the case they could have some sympathy and ask themselves what it would take for someone to go those lengths, take such drastic measures and go through that trouble to obtain those substances.

Addiction is not a moral failing. Many disabled and chronically ill people unfortunately rely on medications that have addictive properties. About 80% of heroin addicts first misused prescription drugs. However only about 4-6% of those addicted to prescription drugs switch to things like heroin. And instead of help or compassion for people who just need help (addicts or not), they just figure we're one in the same and treat us like subhuman degenerates, leeches on society. And I think people need to change how they view addiction. Doctors need to change how they view addiction

[nevertrustadoctorwho]

Never trust a doctor that diagnoses you with fibromyalgia without testing you for any differential diagnoses.

This happens way too often. It really is treated as the "everything we don't want to investigate further" diagnosis sometimes.

[kittycommitte]

[cringecorp]

Ask your doctor if medical gaslighting is right for you

[rollingblakely]

Love how my options are: take the medication and feel like death… or don’t take the medication and also feel like death. At this point I’d like to speak to the manager of bodies, please.

[chronicillnesshumor]

[justsomerandomgay]

can we talk about how dehumanising it is when a doctor tells a patient to crawl through their house when they ask to get a wheelchair.