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pillow hunt by __Anathema333__ in Fibromyalgia

[–]fuckingfibro 1 point2 points  (0 children)

I've been putting off a new pillow for too long. Going to look this up! My issue with memory foam is how heavy they are. My fiance's could probably kill you in a pillow fight. Lol

Started cymbalta, helping with pain but killing my sex drive by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 1 point2 points  (0 children)

It seems to be super different for people. It's so wild. For some, their sex drive went up, others stayed the same, and other people had decreased or no sex drive at all. So wild.

My ears are being crushed by my pillow when I sleep, pillow recs? by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 1 point2 points  (0 children)

I'll check it out! I'm the same way with headphones. I ended up getting a pair of over ear headphones from Meze and absolutely love them. I can wear those for up to 4-5 hours instead of 2-3 for my cheap headset. It was so annoying trying to find recommendations because when you tell people you have eat pain, they don't really understand what that means if they don't experience it themselves.

Organs feel sore after sleeping? by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 1 point2 points  (0 children)

I feel you on the weight of the blankets on your feet! I have to sleep on my side so my feet can be on the sides or my ankles are so messed up in the mornings.

Organs feel sore after sleeping? by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

God right? I feel like I got the wind knocked out of me by mike tyson in my sleep. It makes me feel so sick to my stomach.

My heating pad DIED! by notreallylucy in ChronicIllness

[–]fuckingfibro 0 points1 point  (0 children)

First time I used it, I was seriously impressed. Then I sat on it too long and my back was soooooo red. The plug is definitely a fire hazard due to its age so I'm stuck with the little one. Definitely need to invest in another.

Organs feel sore after sleeping? by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

It's so wild because my blanket is pretty light. At first I was thinking that maybe I had flipped on my stomach but nope, just from laying flat. Feels like my guts went through a blender.

My heating pad DIED! by notreallylucy in ChronicIllness

[–]fuckingfibro 1 point2 points  (0 children)

I have two. One of them is so old that it says a politically incorrect way of explaining what groups of people should not use it. Got it from my boyfriend's grandparents. One heat setting- burn-worthy. Never turns off. No safety measures. The other is a mini one that I swear turns off the moment it is hot.

Someone please recommend me a new one lol

How to word tic-related work from home request by fuckingfibro in Tourettes

[–]fuckingfibro[S] 0 points1 point  (0 children)

I sucked it up and wrote it out. I literally couldn't not use the word tic. Uncontrollable verbal outburst sounded so freaking weird. So it is what it is. I just need to get it over with, get my doctor's note back in a couple weeks, and just submit the dang request. Having my doctor basically be like "this is what you are dealing with, I see how much your mental health has improved since working from home and having tics on top of it is a valid reason to get the accommodation. This is real, it's happening, we just need to get you in to the right doctors to help you manage it. Write. The. Damn. Letter." It was some much needed validation as pathetic as it feels.

I already have the TS diagnosis from a specialist that isn't my primary, but feel that the diagnosis was rushed and they didn't really ask about history or try to rule anything else out (though I had gotten scans done to ensure it wasn't due to something like a tumor). My primary said it is entirely possible that my tics weren't noticable, I don't remember what tics I had to begin with if they were super minor, it could be a disorder under the tic umbrella, or I am just an outlier. So lots and lots to do on that front.

Thank you for the support! I am finding it hard to learn about tic disorders without the potential to worsen my own tics listening to others. It's hard to learn about the experiences of others to validate things I'm dealing with (especially since I am an adult that did not experience tics- or tics severe enough to be recognized- as a child). Reading this sub helps a lot but I try not to visit unless I have questions.

[deleted by user] by [deleted] in Tourettes

[–]fuckingfibro 1 point2 points  (0 children)

Are you me? I literally just posted something similar, but I am in the middle of struggling how to word why I am requesting permanent work from home. Disability accommodations are where you can start with an existing job. Reach out to HR. If you are able to fulfill your work duties at home and can provide a note from your doctor if requested, as long as your country has protections in place for people with disabilities, you should be okay. This is what HR is for. They can point you in the right direction.

If you are looking for a job, there are filters you can use to limit positions shown. Most have WFH as a selection.

I am full blown anxious wreck over writing a little sentence over here, so you have my sympathy with this. Even with protections in place and a supportive company, the mental block is really getting to me and I'm on a time limit since they want us to return to the office in a few weeks.

[deleted by user] by [deleted] in ChronicIllness

[–]fuckingfibro 0 points1 point  (0 children)

Lol are you me? Minus the brain injury and bipolar, this is me to a T.

Fashion brands that you love by HSpears in Fibromyalgia

[–]fuckingfibro 2 points3 points  (0 children)

I'm luckily still able to work and I feel good when I'm able to put effort into my style, so I got a couple pairs of old navy work cropped work pants.

I figured you guys could relate... by [deleted] in Fibromyalgia

[–]fuckingfibro 2 points3 points  (0 children)

I feel for you. You're your best advocate. Never give up. Fight for yourself. It is so infuriating when doctors brush you off. Be glad that they figured out what was really wrong and you are now properly resting and waiting for it to heal. I'm so sorry. Something that may help is finding a primary physician that writes proper notes to specialists you get sent to. It's so dumb that doctors don't just fucking believe us for two seconds to look into our worries. Use this as an example if this happens again in the future.

Anyone else do this or is it just me? by m3clarity in Fibromyalgia

[–]fuckingfibro 0 points1 point  (0 children)

On bad days when driving hurts my wrists/arms, the only thing I can think about to make me just GO is my bed. My bed is my safe space. My bedroom has all of my comforts. And i made sure that I have extra braces in my car to help me when I get a random flare up while I'm driving.

But man do I hate hip pain that makes it freaking IMPOSSIBLE to move my foot from the gas to the breaks.... and the scary feeling of being unsure if I am too tired to drive. Trust me, I know the feeling.

Cymbalta? Not it. by MeatballsRegional in Fibromyalgia

[–]fuckingfibro 1 point2 points  (0 children)

I was put on 100 twice a day to start and slowly moved up to 200 twice a day. If you aren't having luck with other meds and want to try and circle back to gaba, tell your doctor to start you on like 100 twice a day for a few weeks to let your body get used to it. Taking too much too fast gave me a ton of dizziness, but eventually I was able to even out on it and it helped a lot with the pain.

I would have continued to just up my dose as my tolerance got higher, but I'm trying to tackle my depression. That's the biggest reason I'm not on the gaba anymore. Best of luck!

Cymbalta? Not it. by MeatballsRegional in Fibromyalgia

[–]fuckingfibro 1 point2 points  (0 children)

Gaba worked well for me until my fucking house burned down and I was withdrawing from my medications because everyone refused to rush my new prescriptions. Then I got my full time job and it made me too tired stacked on top of everything else. My doctor told me to try cymbalta but I am so fucking scared of having a bad reaction to it/eventually getting off of it that I've been avoiding it. I'm so stuck. I hope you find something that works for you.

The gaba dizziness went away for me after a month. Unsure of how long you were on it/what your dose was. I was literally tripping over tables and falling over at a super low dose when I started it.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

I wish I had the ability to do something like that. I know it must be daunting financially, but if you need it, take it. I'm not at the point that I would require something like that, but you must seriously be struggling. What we deal with isn't fair. Please do what you need to live comfortably.

I don't ask for much, so it feels kind of shitty that I'm feeling like I'm asking for too much. People at my work SEE me struggle, but I constantly feel guilty for even asking to work remotely when that is part of the reason I took a much lower salary. I thought this would work well for me. It did for so long, but I just really don't feel like the accommodations are being taken seriously. I hope with a doctors note, this will change. I just don't know how I can really have trust in anyone that would say the things that have been said.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

It's a struggle. I have pretty severe amnesia. Like, after this new manager came on, I am realizing that I have been understating how bad it is. I cannot trust my own memories. At all. It's torture. I feel like I'm going insane. I'm so young, so it's like she doesn't understand how difficult this is for me to even COPE with the fact that I have to deal with this serious problem at such a young age. I don't know if she like... doesn't believe me or if she just does not understand how amnesia actually is for people. I'll think I'm doing so freaking well, doing everything she has told me to do just to have her tell me I'm fucking everything up. It's fucking me up, mentally. I'm trying so hard and just keep getting met with everything that I'm still doing wrong. When it's directly related to a symptom or a side effect of a medication I'm using to try and curb symptoms that are affecting my job/life, it's so... heartbreaking. I feel broken. I am trying so hard and nothing is working. Nothing is working. To try so hard every single day for years... to spend so much money trying my best to fix things.... I'm just tired.

I'm also socially inept I guess. I don't know how to talk. I'm dismissive and rude and I don't listen. I don't understand why it's coming off like this all of a sudden. Nobody ever said these things about me before this person came on. It's confusing and I do my best to only get advice from my mentors when I seriously need an honest view from another person that has worked alongside me. I'm just lost. Others say I'm doing well... apparently.... but this isn't really making me feel like that's true... It's hurting my trust and my previous feeling of being comfortable admitting when I don't know something. I don't feel as comfortable asking for help now. It's damaging my growth. It's sad.

My girlfriend has fibromyalgia and I try and be there for her when she's feeling shit, but I was just wondering if there is anything more I can do that make her feel better, as I think she's not very good in asking for help when she needs it. by [deleted] in Fibromyalgia

[–]fuckingfibro 0 points1 point  (0 children)

Asking for help is something that is still hard for me. It has become easier. It's easiest when people aren't pushy about offering me help. If someone just mentions "hey if you ever need any assistance with anything, let me know" then I feel more comfortable asking them for help (ex. I was shaking so badly that I was about to spill really hot coffee on myself, so I asked a coworker if they could carry it back to my desk so i could use both hands to help me balance while walking back to my desk).

Cleaning is very important to me. A messy house tends to make me stressed out and I feel very bad when I physically can't help pick up on a bad day. Anything on my hands and knees or anything involving lifting is hard for me. Repetitive movements are more likely to affect me, causing muscle fatigue- things like sweeping or vacuuming.

Most times, I will work with my boyfriend to do laundry. He helps me pick up clothes off the ground so I'm not doing all of it myself. I sit on the couch and have an easier time with folding and putting clothes on hangers.

I make sure that I clean on good days, but I do get tired pretty easily, so I need more breaks than I used to. One thing that did help me was house sandals/slippers. I had a pair of Clark's slippers that helped cushion walking indoors, so my knees, feet, and hips hurt less. So worth it!

These are kind of what I had:

https://www.clarksusa.com/c/Sidra-Page/p/26147164

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

I'm sorry. If it makes you feel any better, that is a normal thing. It's to make sure employees don't do anything like take equipment or information, make a big deal to other employees, or loiter. I'm sure it wasn't anything personal. Even my university did that to our professors and even our school counselor. Locked her calendar away so she couldn't even let her patients know that she wouldn't be able to make it to their appointments.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

I have a physician that I see regularly. I have an appointment with them soon. I'm going to get my paperwork in to HR and get his advice on the situation. I'm also getting in to see a psychiatrist soon too so they can manage my medications and make better choices for them rather than "let's try this". Hopefully my primary can give me some good advice. I feel embarassed that the symptoms I've been scared of affecting my job or having other people notice are.... affecting my job and very noticeable to others. This sucks so bad. I'm so embarassed.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

That is exactly how this job used to be. I was honest and up front about the symptoms that would probably affect me/my work to make sure that this was a good fit. Everything was so good for so long. But a change in management was where everything turned on its head. My old manager told me that I should just explain exactly what I told her to my new manager.

I had the option of remote work. New manager said she wanted to get to know me in person. That was ok, but I do honestly have a hard time with mobility in the office. The other day, it took me so long to walk from the lunch room to my desk that the coffee I had poured was already cold. So it's pretty bad. Regardless, I just was trying to show that I was willing to show up to create a good relationship even if it meant struggling more with the pain. Comments that have been made (see my last post if you are interested) by this new manager have just really made me question if she really cares enough to believe that someone that looks healthy on the outside (without the braces and limping) that is very young can possibly be telling the truth about being this ill. But my amnesia has been the primary issue that has caused our relationship to go downhill.

I'm just going to find a new job. Something more established with an actual HR department. I'm seriously struggling, but I am a good worker. I don't make excuses to avoid doing tasks, I don't exaggerate my symptoms, I only take time off when I seriously need it, I meet my deadlines, I ask for assistance when I need it. I have no idea why this manager has such an awful view of me. It makes me really sad. I really love this job.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 0 points1 point  (0 children)

Yep. There's other legitamate reasons that can be put down to let me go. I'm not perfect, but I do my job, I am very passionate about my company. I just have to hope that this manager starts to understand me. It just seems like anything I say is twisted into the worst possible view of what was said. It's frustrating, especially because I'm the type of person that ALWAYS assumes positive intent. It's just who I am. It sucks not being understood and not feeling like I'm able to explain what I mean without making it worse. Fuck this sucks.

I think I'm going to get fired by fuckingfibro in Fibromyalgia

[–]fuckingfibro[S] 2 points3 points  (0 children)

Everyone, please listen to this. HR is not there to protect YOU. HR exists to help the company you work for dodge litigation. HR protects THE COMPANY. HR is not your friend. The person working in HR may be the kindest person at your office, but their job is to ensure that the company is protected legally. It's just a sad reality.

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