Working/Going to School with Fibro: What works?

October 21, 2009 9:26 PM

I have fibromyalgia. Help me figure out how to be a better student/employee. What accommodations/techniques work for you? I have doctors, so more looking for 'this worked for me/my mom/my friend' than anything medical.

I have fibromyalgia, generally speaking fairly well managed (I have had it for over 10 years and know a lot about what works and what doesn't medically). I have 2 doctors (rheumatologist/internist) who I see regularly and work with, so I feel like I have a handle on the medical side and like, if I could come up with more to do or that would help, they would work with me on it.

I am working on my 2nd graduate degree and I also have work experience and hope to be reentering the workforce soon. However, while I produce excellent work (good performance reviews/straight As in my courses), I also notice that the fibromyalgia can unexpectedly impair performance due to fatigue/pain if I overextend myself (say..during midterms/surprise long project at work). I've realized that I really have no idea what accommodations, if any, to ask for (and I feel a bit ridiculous asking for any, because I should just be able to handle it), or what I could be doing in addition to the general eat healthy, exercise, get as much sleep as possible, work with doctors, to make this easier. Or what the school/my future workplace could do that would help or I could do to mitigate the effect. As an example, my last boss loved my work, but despite me being more productive than most, the amount of sick leave I needed annoyed her.

Bleh. tl;dr.

In summary: What can I do (or other people help me to do) beyond the obvious to maximize my non-fatigue/pain time?

Note: I have talked to my doctor(s) about this...main response (beyond exercise, etc. which I already do) was 'talk to other people who have the disorder/figure out what you need and we'll help'. Hence, the question.

posted by eleanna to health & fitness (8 comments total)

This may be of use to you, particularly the single comment at the end and the link to JAN [also JAN on Fibro]. I would be proactive in the accommodations you seek; for example if a heater, more supportive chair, and/or an ergonomic keyboard, etc will mean you take fewer sick days and can stay more productive, then make sure you get all those things in place. As you've already learned, the law can legislate what employers can do about "excessive" sick days, but it can't legislate how they feel about them and the two are often very different and problematic things.

And as a pre-emptive measure, if you end up working from home on some days (when and if that's possible), the smartest thing you can do is email a Daily Summary to your supervisor every single day at 4:59 PM, detailing what you did that day. It's just a good CYA exercise, really. As with sick days, perception is everything - it shouldn't be, but it is.
posted by DarlingBri at 5:08 AM on October 22 [1 favorite]

This isn't an accommodation from the workplace, but the most important thing is to sleep well at night, whatever that takes. If you have apnea, as some 80% of people with fibromyalgia do, find out and get it treated with CPAP. If you're in pain, take a muscle relaxant or sleeping pill at bedtime, whatever works (and if one muscle relaxant doesn't suit you, try another). Lack of restorative sleep is the single biggest factor in how badly one hurts the next day.
posted by Ery at 6:44 AM on October 22

There are a few sources that say a gluten-free diet may help with fibromyalgia symptoms. This worked for my mother.
posted by geekchic at 6:54 AM on October 22

These are helpful, thank you. I guess the other piece here is wanting to be a good employee, not a problem employee. I feel like I have a good handle on this as far as producing quality work, but not on integrating disability/accommodations issues. That this is an invisible disability which is far, far worse some days than others adds to the complication.
posted by eleanna at 7:14 AM on October 22 [1 favorite]

I've been diagnosed with fibro for 3 years now, and I'm working on my Phd and working full time. Fortunately I've had the same job that I had before I was diagnosed, so my coworkers and boss could see the pain and how bad off I was. That makes them far more understanding than they might be if I just came into the situation.

I do a couple of things to make sure that my condition does not become my Condition, so t speak. I keep a heating pad at my desk for days when the achy is bad but I don't want to go home. I'm fortunate enough to have a boss that lets me work a somewhat flexible schedule, so if I have a bad day and need to go home for a few hours, I can make up that time the rest of the week. I also make every effort to never miss a meeting, no matter how bad I feel. I have to be unable to walk to skip out on a meeting. I have come into work just for the meeting and then gone back home.

The most important thing you can do is to educate your boss and make every effort to avoid looking like you're taking advantage of the situation. Do what you're doing, work hard, take care of yourself and understand that you may not be able to do everything. Pass on cleaning the house to take a nap after work so you have more energy to get things done, order take out or pre-cook meals so you don't have to deal with cooking and can just rest when you get home, get a tivo and save your tv watching time for the weekend and go to be early. And, for me, making time to do yoga or pilates has helped enormously. I've found the less I move, the greater the pain when a flare up hits.

Good luck.
posted by teleri025 at 8:24 AM on October 22

I've found that a little honest and genuine gratitude goes a long way when you're asking the boss for special treatment, even if the treatment's not really that "special" and/or it's mandated by law. If you have to take a day off, work hard to get some kind of deliverable finished the next day. When you hand it off to your boss, whether it's via email or in person, throw in a quick "I really appreciate your being so accommodating yesterday." It's amazing how a simple (not maudlin or overblown!) thank-you can help remind people that they like you and they want to keep you around. People can start to resent your "perks" if you act like you somehow deserve them, even though you technically do deserve them; showing some gratitude helps short-circuit any perception that you're taking their generosity for granted. And saying it when you hand over some finished work is a good way of reminding them that you're still pulling your weight.
posted by vytae at 4:16 PM on October 22

Lots of good stuff to think about here, thank you, all of you. The reminders to say thank you a lot, go to all meetings, not be afraid to ask for what I need are particularly helpful.

The heating pad idea is something I hadn't thought of that's useful.

I'm trying to be responsible here while also taking care of myself so these are all much appreciated.
posted by eleanna at 7:48 PM on October 22

I've always found it helps to confidently say early on, "I may have an unconventional schedule at times, but I always take care of my work," or some such thing. Also, asking for help from your supervisor in identifying opportunities to work at home, whether you are having a flare-up or not. This has helped balance my health a little, instead of doing the roller-coaster thing. Let them suggest telecommuting once in a while, instead of you always being the one to ask for it.

The more people know what to expect, the easier it will be for them to adjust. The more they understand fibromyalgia, the more helpful they will be. I usually wait for someone to ask me about it, and give them a website to look up or brochure from the doctor's office to read. And I always thank them for asking. :)

BTW, you are kicking ass! Good luck.
posted by shifafa at 11:53 PM on October 22