I've been a stay-at-home mom for the past 10 years, working here & there. I was diagnosed with fibro three years ago. It's been tough to deal with & I have a husband who doesn't really understand what I go through. It's time that I get back to work at least part-time (we have two kiddos, one will be in middle school, one in high school - still feel the need to be there for them). How do you deal with working while still maintaining the home & dealing with a chronic health condition like fibro? I was wondering how others out there do it. Most days I feel pretty worn out & in pain somewhere in my body. At least when I'm at home, I can lay down if I don't feel well. Can't really do that at a job!
Thanks for the advice. I have been searching for a job working from home & am currently looking at freelancing after completing a proofreading course. This is difficult to break in to because the posted positions usually require experience. I substitute at a school library very rarely. I worked a half day last week & came home quite sore. You wouldn't think that this is a very physical job but shelving books & straightening shelves was a bit much. I'll keep my eye out for the right position & keep your advice in mind. It's good to know that there is someone out there who understands!
I've never really had a steady 8 hour-job, but I can't imagine going through that anyway.. with legs and feet that become sore,restless, and stiff and a horrible low back pain, how can you SIT in front of the computer all day 5 days a week? Oh and my neck! Standing for long time periods is such a torture as well.
How am I ever gonna do it without losing my sanity? I don't wanna stay at home either, it definitely takes a toll on my self esteem. My boyfriend's in a university and I know he'll go far and achieve great things. Besides my mind's a blur. I would just feel stupid anywhere I go. With my IBS I can't handle much stress.
I work 3 days a week - and like Kirstee sleep when I can - I often pull over on the way home - I pace myself knowing I have 8/9 hours ahead of me - fortunately it's my own business so if I know I'm out with clients I'll have 2 full on days and then a quieter day - working really helps me to focus on other people/things rather than focussing inwardly on me - I love my job which is a blessing - good luck x
I worked for years with fibro, my opinion, you do what you have to do, but it isn't easy. My advice, don't work in the hotel business. It is very stressful and requires 8-9 hours of standing during your shift. No matter how much pain you are in, if there are guests to take care of or work to be done, you don't get to rest or sit down. Nor do you get to have a break or lunch. Over a nine year period I kept lowering the number of shifts I worked a week from 40hours down to 16 and I finally said enough.
Keep looking, you will find that perfect job for you.
I have been working 16 years with Fibro symptoms, and this past 2 years with pretty moderate symptoms (the first 14 were probably low on the scale, I just didn't feel right, more tired and sore than usual etc).
I worked shift work and have been searching for a more manageable job and have finally found it. I can't get completely out of shift work but this job only requires taking call for 7 days every 8 weeks or so. Those weeks I can be pretty bad if I get called in. Basically I just do what I can, some weeks I don't accomplish much (brain fog is HORRIBLE at my job), this week I am doing better but as I sit here my shoulders and neck hurt really badly, as well as my left lower rib and I am in for alot of computer work today with 6 samples to interpret. At home, I have to say my husband pretty much does everything and believe me, he HATES it. He misinterpreted the doctor's orders to work around it as to PUSH THROUGH IT, lol. So when I say, look I am really tired and sore today, he says, just push through it...... ugh. I am working on trying to be more active and help out more at home, I just hate how upset he gets when he has to do it all.
I am a lab technologist by the way. I have found a massage therapist who specializes in myofascial release and he is helping immensely. I was taking lyrica 200mg total per day (100mg morning and night) and am now down to only the morning with 3 treatments. I am still sore but don't feel like I have been running a marathon or hit by a truck. My fatigue is better but the last 5 months have been really bad with a bad flare, HUGE weight gain in the last year (I don't even recognize MYSELF anymore!). I may take some tonight as well until I get in to see the therapist on wednesday to try and help keep some of this pain away this week and help out at home more.
I HAVE to work in order for us to keep our house, 2 cars and support our 3 kids, so I suck it up. On really really bad days I take a sick day ( I get 15 a year) or I just take it easy at work, just accomplish less than I would like.
I know if I get really bad, then I can get my hours reduced through my physician, I just haven't got that bad yet and want to save that time for when I really need it, who knows what might be coming down the road. I also feel that if I stopped working I would actually get worse since getting here to work and working keeps me more active then if I was at home, where I KNOW I would just sit on the couch all day and do NOTHING.
Good luck to you, find something manageable for you, the library might be ok on a part time basis, but with less lifting of books until your body got used to it (no over the head reaching, very very bad........ I have to do it all the time, I am short but I know I shouldn't).
Wow, thanks everyone for your responses. The key I think is to work at a job you really enjoy, not work long hours, not work a super stressful job, & don't reach above the head! All of you really nailed it. I will keep searching but be particular about what I'm looking for. I will know it when I see it.
Good luck to everyone out there who does work, whether it be full-time or part-time - it's tough & I know it. I admire all of you for forging ahead but do take it easy. Thanks again!
The things I try to avoid is sitting for long hours. I have to change positions between sitting & standing within a 20-40 min span then have to walk around for 10 minutes or so. My employer (at this time) wasn't able to work with me so I'm presently on short-term disability. I haven't received a diagnosis of FM yet, but I've gotten ALOT of feedback from doctors that it is probably FM. hopefully once I get a firm diagnosis and specific restrictions I can work with them so I can go back to work. I don't like being off work, but if in the end they are not willing to help me then I'll be looking for a new job. What sucks is I'm 28 (as of 4/30) w a finance degree and feel like I just turned 70.
"If you have ignorance about something seek knowledge, because ignorance breeds hate and hate breeds destruction."
Wow, that sucks. Being 28, with a degree in finance & not finding anyone to work with you. They are missing out. I sure hope you find something soon. Good luck. Although I'm a bit older than you (47!), I know how it is feeling like you are 70. Let's hope things look up for you soon.
Hi all I am 57 years old and I am still working full time. I am ready to ask my doctor to put me on disability. First it started with not doing housework. I still have Christmas lighted garland around my back door. Then it was cooking. That gets expensive fast. Now I come home from work and just go to bed and sleep till it's time to get up and go to work again. Getting ready for work takes me twice as long as before. I was DX'd FMS over 2 years ago. I have a husband and brother at home but there are some things I just will not let them do. My husband is 63 diabetic and works hard fulltime and my brother is disabled and lives on beer. Is it wrong to ask my doctor to do this?
This is the information I need. I'm currently working 6hr shifts but that stops next month. I don't know how I will manage 8hrs without a sleep. Looks like I will have to try & keep my shorter shifts and hopefully stay working in my area.
I'll keep reading everyones posts, maybe it;ll help.
I had my review today. I am getting no raise this year due to time out. Are they forgetting I broke my knee-cap and had to take 3 months off. I did that on purpose just so I could take off and be in agony for a while along with the Fibro. Sorry about the sarcasim just am bloody mad about this. Anyway doctor told me to get paperwork for FLMA Family Leave Medical Act?) and she will fill out forms so that they can't fire me for being out of work due to flares. I was told by my Boss that this is becoming an issue. So will be taking the long walk to Human Resources this afternoon. Also starting PT for shoulder tendinitus since January that is causing even more flares. Can't win!! But it's ok, I'll manage.
Low pain to all and thanks for the Kudo's hpfan28
The Following User Says Thank You to catkaru For This Useful Post: Hamom (03-26-2011)
I know exactly how you feel .. I was a model employee up until about 1 1/2 years ago when my pain began to worsen and worsen .. I sought out medical help and was prescribed hydrocodone 5/500 and when it was realized that wasn't doing much good & it seemed to be a lasting pain my doc changed my med to hydrocodone 7.5/325 to reduce my Tylenol intake. After continually getting worse I was referred to a pm doc and after months of testing got to a point where my pain level was 4-5 while working. On one visit his unprofessionalism caused me to change docs and with being at home my pain level is 4-5, but if I try doing anything including going shopping w my wife my pain level will shoot up to 6-7 easily and only go up from there.
ANYWAY .. Why I know how you feel .. I have a desk job doing customer service requiring me to sit for long periods of time. I have worked for this company for over 5 years and pride myself that I am more knowledgeable than MANY of my team leads .. About 1 year and 3-4 mo ago my pain level got to the point where after sitting between 20-40 minutes I had to get up and walk around for 8-15 minutes. While walking I remained productive by collecting the departments mail or answering associates questions while walking past their cubicle.
Long story short even though I remained productive AND it was visible, but because these other "busy body tasks" were not my job function it could not be weighted on my review. Pretty much it would've been the same as if instead of working that I go to the bathroom and text friends.
Prior to my fiscal review I requested to be moved to a different department inwhich I'd be able to do more easily and with less pain, but was denied. I got doctor letters stating that I could not sit, stand, or work for more than 30 minutes at any particular time and if this disability inhibits him from effectively performing his duties to please accomodate him so he is able to be a productive member in your organization. After seeking help from HR I was told that they'd provide a "podium" & a wireless telephone headset enabling me to stand, but I would be restricted to walking within the confines of my cubicle. This hypothetically would fine and dandy, but unless they are going to raise my entire workstation I still have to lean over to see the computer screen and unless I am not going to pay attention to the call I can't walk to a point where I am unable to see the computer screen and navigate through the computer's program screens. Bottom line: their attempt to help me would not create long lasting benefits .. Even though I accepted their offer in November 2009, but I did not receive ANY assistance by 1/20, at which after speaking w my pcp it was decided that it would be in my best interest to go out on STD.
I've been on STD since 1/20 and have had 4 mri's, 3 emg nerve tests, a nuclear bone scan, TONS of blood work, I've seen my primary care physician, 3 neurosurgeons, 1 neurologist, 2 PM docs, a radiologist, and am scheduled to see an endocrinolgist I still haven't received a diagnosis or a treatment plan because their not sure why I hurt as bad as I hurt. My pcp, pm, and a neurosurgeon had said that I might have fibromyalgia, but they have not committed to a diagnosis yet.
HOPEFULLY .. We sufferors will receive some type of sympathy from the corporate world so our "issues" are not held against us, but can explain why we are not able to do something.
"If you have ignorance about something seek knowledge, because ignorance breeds hate and hate breeds destruction."
I have been diagnosed for 7 month and I'm on light duties at work. I work in the perioperative department and have been on light duties for two months. I have one month to go until I'm back on full duties. Including scrubbing, circulating & anaaesthetics, plus oncall over night, quite a heavy workload.
I'm trying lots of different avenues to improve my pain control. Recently I went to my chiropractor who I hadn't seen fro three years. Stupidly I told him my diagnosis--He stated that there was nosuch thing & was a wishy washy diagnosis the Dr's used when they didn't know what was wrong. ABSOLUTE RUBBISH!!! Then he told me I was too old to do physical nursing. I was stunned to say the least, up until this visit I had alot of faith in his work.
Looking for new avenues now.
dcarb, I agree...'a bunch of rubbish'. When anyone says fibro is rubbish, have you ever noticed they don't offer an alternative to what they think it really is. Just people exercising their tiny brains and flapping their gums.
Why oh why can't others understand what it's like to live & work with fibromyalgia? I can't believe the audacity of people to not help someone continue to work by making some simple concessions. I am so sorry that all of you have to go through this. And for a health care professional to state that fibro is "rubbish" is incomprehensible. Please know that I am thinking of all my fibro friends & what we all must go through. Hang in there everyone!
I just had my fibro assessment on friday and even though I don't have the tender points (only 3 of the required 18) she feels that I DO have fibro (they are getting rid of the tender points eventually) but probably more of the chronic fatigue symptoms. She has asked me to attend the 9 week clinic/support group that they offer and has recommended a modified work week...... not sure how that is going to go over, will talk to supervisor this week (I will have to have modified work week, the clinic is 2x a week for 9 weeks on tues and thurs afternoons from 1-3ish........ that would be 4 hours a week of appt time...... I only get 15hours a YEAR).
She also gave me many pointers *such as keeping an activity journal for 2 weeks, record every hour what you did and how you feel if you feel anything. Review the journal after a week, see if anything seems to affect you worse or better..... change if you can what makes you worse..... and keep what makes you feel better. She also recommended if I want to get active to start with just 5mins at a time once a day (even just 3 times a week). If I don't feel worse, then add a minute... etc. etc. I will trying some Chi gong (like tai chi) there is a free clinic where I live once a week, who knows.
I am grasping at straws now!!! I need to get more active and LOSE weight. I feel horrible right now
I haven't been Dx'd with FM. But I felt the need to chime in.
I am 35, work FT, and have a 7 and 3 year old. Since October 09, I have been in a constant battle with the pain/depression/pain/depression cycle. I have missed SO much work. Not days, but hours leaving early.
I must be the most fortunate person on the planet. I work for a Fortune 500 company that puts People First. No questions asked. If it is my children, my husband, or myself- I leave. No snide remarks, no reprecussions, nothing. I'm honest and I take my sick time when I have to. But I get work done from home.
I wish I could work from home, but I need the stability of getting up and getting ready for work. I would be more depressed and in pain if I did not have a reason to be out of the house.
OP- I wish I knew what to tell you. More than anything you need to find a position that feels like fun so that you never feel like your working. Be critical and picky about who you work for. Don't mention your health, but get a feel for your potential boss. You do not have to disclose any information about your health AT ALL. I would steer clear of anything that caused me to be on my feet.