Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Just want to say thank you, again. I've been here less than 24 hours and already feel like I have a new group of friends :)
I would like to know how you all handle work and balance life when symptoms flare up really bad. My boss is pretty cool and doesn't ask too many questions but I hate to call out sick all the time (plus I am out of paid time off and my work does not offer sick time). I am not a flaky person. I have always been a reliable worker who busts my ass and am good at my job. But I have a lot of days lately where all I can do is lay my head on my desk for a while or go to the bathroom to cry. I pride myself on being tough (even though I am highly sensitive) but I have days, more and more lately, where I just can't anymore. I'm tired of being strong, I'm tired of working through the pain, I just want to curl up in a ball and have someone take care of me. I just want to go home but I need to get paid, and I also work for a fairly large company and so no matter how cool my immediate boss is, he will eventually have to hold me accountable for missing work all the time due to strict attendance policies (that were designed for all the college kids I work with that regularly call in sick after staying up to late with their friend Jose Cuervo).
On top of working full time, I also just started back at school looking toward a career change. I am only taking 4 credits but with my illness(es) and working full time, I am finding it very hard to balance. I go to work, come home and study for 2-4 hours (the brain fog causes me to have to re-read pages over and over again and I have to take notes as I read or I will never remember anything) and then go to bed too late and get little sleep. I end up drinking too much caffeine during the day, which I know is really bad for my symptoms, but I just don't know how else to get it all done and stay conscious.
I think I set the bar too high for myself. I have always had high expectations of myself and push myself too hard. I just don't know how to give myself a real break. I have a coworker that is also going back to school and he is taking 15 credits while working 32 hours a week and manages to also be this pleasant happy and fun person to be around. I know I shouldn't compare myself to other people but it makes me feel like I should be able to handle it all when I can't. I think part of it is being a woman. Even when I was relatively healthy, I pushed myself hard to prove that I was strong, smart, and could do it all myself and didn't need anyone to take care of me. Now, with my health deteriorating and feeling like garbage all the time, I feel embarrassed. I have to ask for help a lot, I'm not as strong as I used to be, and I get pissed off/sad/frustrated very easily.
Anyway, I just wonder if anyone out there has tips on how to balance and cope with everything. Have any of you had the conversation with your boss that you have fibromyalgia? Can you qualify for intermittent FMLA for fibro?
Thanks again! Hope you all feel well and are having a good day <3
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
They used to call me google at work bc anything anyone asked, i could answer off the top of my head, but because of my fibro fog lately, i can't seem to remember anything. Lol.
Good luck with everything. And just know that you aren't in it alone. I think i am going to print out a thing on fibro to give to my boss the next time he asks why i have to leave. "Here is all you need to know about fm. If you have any other questions, just call me." Lol
Pacing is key to living with Fibromyalgia. You should be able to get some accommodation from school. Unfortunately, there is no easy answer to any of your concerns. Most of us were Type A personalities before FMS got a hold of us. You can live your life just at a much slower pace. Take care.
make idiotic statements like that make my blood boil. I try to use those opportunities to educate people. Take care.
I have a made up disease, and I'm a man. It has to be all in my head, right? Very frustrating. I also get a kick out of the web md newsletters I get. It suggests when you have a bad day, explain it to your coworkers and they will help pick up the slack for you. How naive in my experience.
Anyways, welcome to the group. I tend to come and go but I never leave the group completely. Many wise experienced people here that can offer lots of help and empathy.
I found myself in the same boat. I was worried and since i have never taken leave time before, I was nervous of what to do.... and I work in HR! Are you in the US? If so, you have options for you to use that protects your employment status. I use Intermittent FMLA. Basically, you use the time you have for when you are ill and when you have appointments. Even if you are out of PTO/Sick time, you are protected from your employer using it as a termination validation. What you need to do is go to your HR team and request the inter. FMLA paperwork. Please give me a chat... I know everyone's options are different from their company, but would be glad to help you down a path to getting support.
It took me a long time to reorganize my life. I had to find what I can do and what pushed me into a flare. It is still not perfect but it is a little better. Go to askjan.org to see about accommodations through the Americans with Disabilities Act. This helped me immensely with keeping my job.
As Fantod has stated, you can try for intermittent FMLA if your job is big enough. Having intermittent FMLA was a lifesaver for me the first 3 and a half years of my illness. I also used the ADA act to receive reasonable accommodations at my job. I was given an ergonomic chair, typing dictation program with other equipment to help. I have an hour lunch, so I have a reclining chair that I use to relax in.
Pacing is definitely key to being able to function with Fibro. We must remember not to overdo it and to get plenty of rest whenever possible. I am fortunate to have my medicinal cannabis card and have found many strains that help with pain and give you energy. I use a non-psychoactive mouth spray that relaxes my muscles and energizes me. I use the spray before work and it helps tremendously.
I have a fibro bag that I ltake to work with various pain creams, supplements, essential oils, a soft, furry throw that I can plug in,, extra sweater, and healthy energy snacks with nuts and fruits. I used to keep a tens unit in it, but I know longer need it.
It hope that you find the above information helpful and ifeel free to ask about my regimen. Best wishes.
Please please take advantage of all the help that is out there and more importantly keep track of everything. I was very very lucky for getting disability my first time applying but I had everything documented and my doctors were in agreement. I'm not saying you are there yet but if you feel that your road might end up there be prepared.
I'm sorry you are struggling with all this just know we are here and are here for you... so my thoughts and prayers go out to you
Sarafina- I do live in the US. I had gotten intermittent FMLA a couple of years ago before I had anything resembling a diagnosis but I rarely used it. Mostly out of guilt, which seems so stupid, but I have always felt guilty for taking days off even when I really needed them. I also was getting a lot of weird vibes from my doctor at the time. I think she just thought I was a hypochondriac and a whiner and I don't really think she believed how much real pain I was in. When the FMLA coverage ended at the end of the year I was just sick of that doctor and was worried that she wouldn't fill out the paperwork again. I have finally found a couple of supportive doctors and will speak with them about getting the documentation I will need. I do really appreciate your advice and guidance and would love to chat about it!
Cocoa- A fibro bag is genius! I have a few things here and there that I try to pack with me in my purse but I often forget them (haha, surprised?? There's where those post-it notes come in handy!). Getting a tote or something dedicated to all of those things is a really great idea :)
wobbleweeble- I'm so sorry to hear that you are unable to work. I totally understand wanting to work. I wouldn't say I am totally in love with my job, but I do enjoy it and I am working toward a new career that I really want to succeed in. I will look at the ADA website for sure to get more info. I have done some documentation but could definitely be better about it. Did you keep a daily journal? ...And yes! "you look so healthy"... UGH. Even so many of the doctors I've seen just keep saying "oh don't worry yourself about your symptoms, you are a healthy young lady!" Sure wish I felt like it. Feel like I'm 31 going on 85... hahaha.
I suppose the other thing I wonder... because I have read some on my own and reviewed the packet the rheum gave me... does fibro get worse over time? Does it progress or can it just randomly improve on its own sometimes? I know the things I should be doing to help with flares, like light exercise, but even with keeping up with those sorts of things have you all mostly found that your symptoms just kept getting worse?
Thanks again for all the support and guidance. You are all so wonderful and I wish you all the best of health :)
As for me, my experience is that I am about the same since I was diagnosed in 2008. According to my army of specialists, I have a severe case. And, my underlying issues are worsening. However, I continue to muddle my way along regardless. My motto (thank you Winston Churchill) is that "if you are going through Hell, keep going."