Employed and managing Fibro/Chronic Fatige Syndrome?
I was wondering if anyone else here struggled with similar things that I do.
I'm diagnosed with Fibromyalgia, and I'm still working full-time. I don't intend to apply for disability - I want to continue managing my symptoms well enough so I can work as long as I can - but it is difficult.
There are days where I struggle to stay awake even occupied with tasks. Some days people look at me funny because I'll be limping. I don't know when I'll get the next migraine. And it's hard to explain to coworkers why sitting for hours and typing, as low-intensity as that is, can be exhausting and painful.
Has anyone else here gone through the same kind of thing with chronic pain/fatigue?
Wow, it's nice to hear a familiar story. I have the same struggles. Ppl just don't understand unless they have it. I am the same way. I get tired and when I'm crashing, I can't focus on a thing. I find that coffee helps if you really need to finishyour work day but can't even process a single thing in front of you. I didn't believe in fibro fog when I first got diagnosed, but it's real and so is the exhaustion.
i know how frustrating it is when you're in pain or feeling sick or exhausted. Ppl seem to think it's not that bad because they look at us and we look normal. I always try to focus on having a good day and every time it turned out bad I'd tell myself "it's ok to have a bad day, tomorrow will be better" but it was because I hadn't accepted that I'm always going to feel like this and guess what, tomorrow came and it was another bad day.
Its really hard to work with fibro. But for our mental and emotional health it's important. I'm working full time too. It's all about finding a balance, finding pick-me-ups that are healthy and learning about yourself and your triggers. It takes time but you just have to remind yourself of who you are aside from fibro and force yourself to still be that person.
i felt like my fibro stole everything from me and I was so worn out that I didn't even care. But when I realized the importance of caring and carrying on, things became easier :)
Over here (UK), you can apply for disability while continuing working. Is there no option like that where you are?
For myself, I likely have Central Sensitisation following spinal injury (a surgical error), which seems to be the issue with fibro also, so I have a lot of similar symptoms (fatigue, fog, pain). I guess the decision I'm coming to, is that I refuse to kill myself working some job I likely wouldn't even enjoy (as the career I really really wanted to do would definitely be too much for me now). It just doesn't seem logical. Our worth it this sociey gets determined too much by some notion of 'productivity', and it really shouldn't. There's value just in being. When just getting through the day can be such a struggle, I honestly don't know if it's really best to try to work despite that, unless it's something you yourself truly want. So, please don't feel obliged to push yourself so hard.
@Mugicha
In the USA? Yes and no. It depends on how you became disabled, the extent of your disability, and your ability to recover from the disability.
If you become injured and temporarily disabled as a result of your job, there are a lot of resources. Some jobs will give you insurance, and there are state and/or fed resources.
If you're injured and temporarily disabled - or have a disability that one does not "recover" from - it's a bit more complicated.
Most of the supplimental income (working while disabled) literature from the government assumes you were once disabled to the point of being unable to work. The wording behind the very programs themselves - "ticket to work program" and so on - reinforce this. Applications are spoken of as a continuation of your unable-to-work disability benefits.
In addition, the inclusion of most "invisible disabilities", from severe depression to fibro, is very recent to the overall vernacular of disability law within the US.
If you're working and have a disability, the law expects you to be a self-advocate and assert your rights under the Americans with Disabilities Act. Which is a whole nother kettle of fish. Doesn't mean supplimental income, or paid sick days. It assumes you're able to perform your core job, and anything supplimental can be done with "reasonable accomodations".
And while FMLA helps for those who are sick, disabled or not, by letting people who were employed for more than a year full-time not get fired for becoming very very ill or disabled, it explicitly says that it does not mean you'd get paid for your time off.
I've been exploring different options for a while, and the whole thing is a mess.
In fact, re-reading through all the stuff (legislation, screening tools, application requirements, etc) related to ANY of the USA gov disability stuff ... it makes me feel like I'm just a lazy scab who is trying to get out of work and that I'm just not trying hard enough and that I'm complaining too much.
which is clearly the case :p
Guys, you don't know how happy I am to find you! I suffer from all of the same things mentioned in the posts above. I work 55-60 hours a week, go to school online part-time, run a textile business on Etsy, take care of my household, volunteer with a counseling service for 10 hours a week and somehow find time to exercise and cook meals.
I have to sit down at the beginning of the week with a master list of chores with their deadlines and fill in my planner so that I don't overload myself on any given day, but sometimes I just have to grit my teeth and get through it all.
I have had FMS my whole life, but a recent near fatal accident kicked it up about 10 notches. I feel you on the fact that even desk jobs can be exhausting. I have to keep a thera-cane at my desk to help work out the knots and people always look at me sideways when I use it. People always say, "Oh you're too young to hurt that much" or "You look perfectly healthy, why do you act like you have arthritis?" Well it's not arthritis (which runs in the family) and it's not lupus (which also runs in the family).
Anyways! I just felt the need to get that out to some folks that would understand, rather than my current "support network" who just get tired of hearing about it or simply can't relate. I hope all of you are having a good day today!!
I know exactly how all of you feel. I have lupus and fibromyalgia. I'm a stay at home mom for 2 little kids. It's always been a struggle. Many of the mom's at their school don't seem to understand why I can't do things some days. I've struggled with depression and they've called me the crazy mom. It's hard when people don't understand that I have to take pills in the morning just to be able to get up and pills through out the day just to tolerate the pain and pills at night to help me sleep through the pain. It's frustrating some times. And I hate how it affects my kids. When my husband comes home I'm exhausted so much that sometimes I just go straight to bed. The house is a constant mess because I can't always keep up with folding the laundry or doing the dishes. I don't know what I'd do if I had to work on top of all of this. It's exhausting sometimes just to get up in the morning.
It's tough! But so are you. Just because the house is a mess, you shouldn't beat yourself up over it. The fact that you carried children to term and are now raising them is an amazing accomplishment to me. My husband and I just decided to grow our family, which means no more medication for me. Getting the pain, aches, and fatigue to a minimum is going to be interesting, because like you, I need meds just to get up in the morning. I've found that a warm shower mixed with light yoga in the morning helps the fog and the pain, but sometimes the pain keeps me up so late that I don't get up in time to do those things before work. C'est la vie! (That's life.) Listeners sometimes need to talk as well, so if you ever want to talk to me, I'm here for all of you. :) Together, we can get through this!
@FaeKrieger----
Thank you for the support. My pregnancies were not easy. Both of my kids were early. But they were fighters. I was sick my entire pregnancies. Had to have a home health nurse come over. I was on IV for months. On bed rest for most of my pregnancy. It was really hard on my body. They almost thought I wouldn't survive the labor for my second pregnancy. I would have loved to have more kids but they told me it would be too hard on my body to have another kid. My kids are great. They are happy and healthy. But it was really hard. I'm glad I have them but part of me feels sad that I can't be a "normal" mom. They take care of me and watch over me in case I fall or something. I know it's hard on them too with me being sick. Sometimes they are the only thing that keeps me going.
@wonderer Just wanted to let you know you are NOT alone, and as I type this I'm realizing I'm not either!! Thanks for writing....this is my first time on here and just browsing until I came across this subject. I couldn't believe I was struggling through work as much as I was....then the pain. Finally was diagnosed with the Fibromyalgia and hadn't known what it was....then that feeling of not working and getting behind on household stuff and kid stuff. I sometimes sleep until 3pm just so I can have about 4 decent hours out of my day. Thankfully my mom understood as I found out my grandma had the same. But for people to look at you, and your somewhat fake smile, they 'see' nothing wrong?? So they don't understand! Or they think your going to get better and ect. So hard for me...I am not sure which is harder...me or the outside world!? Also have major spinal problems, seeing surgeon, and filed for disability in 2010...4 yrs ago! Denied! How do I get back to work? I just shut the world off! Frustrated!
There is a supplement I take for fatigue called d-ribose that has helped me a lot. If you look it up there is plenty of information online. It has helped me a lot with the fatigue that comes with my fibromyalgia.
I've been dealing with fibro for about a year, so I know your struggles! I see a massage therapist once in awhile, and it really helps. It's the difference between being sore and grumpy and being able to have an enjoyable life. Something is fibro folk really need to do is get some exercise. It can seem impossible sometimes, but start really small and work your way up. It's crucial for reducing pain and helping with some of the sleepiness. Hope that helps! Take care of yourselves!
Hey, I suffer from M.E and Fibromyalgia and I'm a full time student. You're not alone! <3
Hey, I have the same type of problem... I have fibro and am a full time student. I have learned sometimes it is because you don't get good sleep. Go to you doctor, I have started taking pills to help me sleep better and it has made a world of a difference. Also, taking anti inflamitorysmight help. Plus I went gluten free and since then I have been feeling so much better. Idk if these will work for u but they have helped me!
First Discussion on Chronic Pain And Illness
To Be Held on Wednesday, April 15th, at 11pm EST In the Pop up Guided Discussion room!.
Now this is just the first, we want to see how many people are interested. Depending on the turnout this will just be the first in a series of discussionsand it may become a regular thing, also we may switch up times. Thank you. If you have question or comments please pst them inthis thread
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Listener andSpoonie,Jaelin and @HiddenGrace
I was feeling poorly late May. I thought it was a passing flu until I could not get out of bed late June. I have been on and off short term disability
I've been struggling with chronic fatigue, joint pain and nausea for the last 4 years. Still with no diagnosis
