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Who works with Fibromyalgia

Oct 20, 2015 11:50 AM

Such a hard thing to do isn't it?!? What kind of work do you do and how many hours do you work. What problems does it cause for you? Is it a positive or negative thing?
Anyone with advise, thoughts, I would also love feedback, even for those that do not work.
Me: I am a mental health therapist with my own practice. I have cut my hours down, but somedays I have a full schedule 9-6 with one or two 45-1hr breaks where I go home to let the dog out or make work phone calls, emails, blah blah. I see clients 3 days a week and also have much paperwork and other stuff that goes along with having the job. I do like it most of the time. I like connecting with people and trying to be supportive. Of course there are times when it is mentally draining for me, or overwhelming to have to make connections and listen/converse to 7-10 different people or families on my client days. Sometimes I have to reschedule appointments for days I am bad. And then when I get regular sick (flu, cold, whatever) I also have to cancel my day. Most of my clients know I have a chronic illness and are understanding. It is still hard and finances are TIGHT. I hate the thought of disability but still feel that I could cut my hours more for my health but I need the money. And that is a bummer!!!

Oct 20, 2015 11:44 PM

I have fibro and RA. And I work in security. Depending on what I'm doin it can be good and bad. Some days we do nothing and it's miserable. And somedays I don't quit moving. Also miserable. But some days we have a good pace of walking and sitting and those are the days a really enjoy my job.

Oct 21, 2015 12:21 AM

I just finished school for my ba and drug and alcohol couselor. School was hard but I could miss a class or two and keep up with homework. Now the prospect of working is both frightening and exciting. My hope is to work part time. I don't now if I can do it but I want to at least try. My theory is I am going to be in pain no matter what I do, so go for it. I am on ssi and it is very limiting in its posibilities, but I am greatful none the less.

Oct 21, 2015 10:56 AM

I work cleaning homes for a company and its very hard a lot of the time. My fiance wants me to quit but financially we can not afford that.

Oct 21, 2015 9:08 PM

My hat is off to all of you. .. I know I can't do it, but I had hoped I would for 4 years, until last year. I really pray for blessings on those like you who have to work because they have no other choice. 🙏🌼

Oct 22, 2015 12:08 AM

I work full-time sometimes more than 40 hours a week. I have to because it's the only way I can have insurance. It's exhausting. Most days I just come home and get in the recliner with a bunch of ice packs and don't move till it's time to crawl to bed. On Saturday I'm so exhausted that I'm useless and then Sunday I'm rushing around trying to do everything I couldn't do during the week. It's a vicious cycle I wish I could just quit 😥

Oct 22, 2015 1:40 AM

I work part time currently on a phased return to work, doing office duties, it's very hard and my fatigue is through the roof, I have no social life as I have to work due to having a mortgage on my own and I have to go to bed at 8pm

Oct 22, 2015 4:25 AM

I worked for 7 years after my first fibro diagnosis a forty hour work week. Mostly as a single mom and homeowner. I worked in government and due to the economy they had downsized putting me an another person doing the job of 9 people. The managers changed and i think they all took the same class on how to treat employees terrible with that i started having anxiety attacks and ending up in the ER. Fast paced and stressful I now suffer from PTSD.

Anyway I would come home let the dogs out feed them and the kid then nap. Wake up for awhile then bedtime. Weekends were clean house, mow, take care of yard, try to do something fun with the kid, and shop with a lot of naps inbetween each. I constantly had the wonderful fibro flu and in Jan 2014 survived H1N1 on top of it.

I was laid off a couple months later continued looking for other work in the midst of selling a house, packing and driving 300 miles to go on interviews where we were moving to. I was always know as a hard worker and ignored pain and tiredness. I actually dug up and relandscaped my entire front yard by hand and rotatiling before 1 knee surgery after it then the other knee surgery and then finished it. I tried never to stop or slow my life but did take naps basically total denial of my limitations.

After we moved I continued going on interviews and until I woke up one morning screaming in pain did I slow. The pain seizures forced me to slow down. I went seriously down from there. So i havent worked since march 2014.

Everyone handles it different there is no magical this is the way to handle it. Obviously the way I handled it wasn't the best but being slightly stubborn I was the i am not going to let this control my life person.

Oh and I want to add if you think money is tight now then you need to understand and prepare yourself for the years of no income it may take you to get disability.

Oct 22, 2015 7:41 AM

I also work full time because it is the only way to keep my health insurance. I have Systemic Lupus, Sjogrens Syndrome, Chronic Pain Syndrome, and Fibromyalgia. (I am not sure what the difference is between Chronic Pain Syndrome and Fibromyalgia- although my rheumatologist assures me that they are 2 different diagnosis and there is a difference)

It's a struggle to work. Especially when I am flaring and my employers are not understanding or sympathetic to my condition.

Oct 22, 2015 8:12 AM

I worked full time in an insurance brokerage for 12 years of the 22 that I've been in pain. I worked from 9-5 and never took a lunch break because I could not get my momentum back when I would stop working. When it became so bad that I couldn't go to the office or couldn't stay, I finally had to cave in and stop working. I loved my job and wish I could work. It's a shame really but my hat is off to those of you who do go to work and push through the pain.🌻🙏🏻

Oct 22, 2015 2:09 PM

My doctor suspects I have fibro. I've had constant pain and tiredness for the past 5 years since I started working again. I cut down to part time but actually found it worse for me because the stress and anxiety of having no money was so much. I also have type 1 diabetes so my symptoms were always blamed on that. I work full time as an assistant accountant and my employer is really understanding. I just put up with it most of the time even though I'm yawning constantly and struggle to walk up the stairs to my office some days. I need to work to be mentally well, the social interaction keeps me going and helps me to not get sucked down into the depression.

Oct 27, 2015 4:48 PM

I worked as a pastry chef manager for several years with fibromayalgia not knowing what it was. I knew I had pains and I was tired but I just assumed it was from working 16 hours a day on my feet the whole time working with no breaks . however once i started getting pneumonia and passing out at work I've not been able to return to work since January. I was miserable and am not much better now. Still working on getting a ful diagnosis and on an actual plan. If I had to say anything towards working now. I would say Lord help you. As bad as I need financial help right now the idea of going to work much less getting up and getting ready to go to work would be murder.

Oct 27, 2015 10:43 PM

@ newfibrogirl
Your "virtual" support group is behind you 100%, since we've all been there. Some of us are still there. Keep on your physicians until you get the answers you need.

Hugs and Prayers

Oct 27, 2015 10:46 PM

Shiovahn...thank you. I do feel like I'm a human being when I'm here. This is the only place I can let things out and not feel like I'm being judged nor condemned.

Oct 27, 2015 10:58 PM

I miss working soo much. I worked in corporate banking for 10 years. I stopped working in 2009 and have fighting for ssd for 5 years just had my 2nd hearing. I would give anything to go back to my productive working life .

Oct 28, 2015 4:30 AM

I work 50 hours a week as a Transportation Supervisor. Mostly bad days and I want to jump off a cliff. I don't see it getting better. I'm hoping to win the lottery, lol!!

Oct 28, 2015 4:34 AM

I was a customer service administrator and rep at 2 different construction sub contractor firms. I miss having a routine, a place I had to be at the same time Monday through Friday. I miss feeling like a productive human being. I miss the interactions with my co workers and customers. The money was nice too ;)

Oct 28, 2015 1:36 PM

I don't know how she does it, but she organizes my school, and helps convince parents that my school is right for the students

Oct 28, 2015 3:03 PM

I never worked outside of the home. My late husband was a Federal Agent so I was able to be a stay at home mom. It is a very hard job. I did what I wanted to do with my life. I didn't want to work outside the home. I commend those of you that do both. I couldn't have done it. I do miss the routine of taking care of my family. My boys are grown, one lives 500.00 miles away with my granddaughters. I live with my youngest son but I might as well be alone. Oh I'm shutting up now, this is starting to sound like I need cheese to go with this wine...a bad yr...Don't order this one lol :-)

Oct 28, 2015 3:55 PM

I work full time in housekeeping. My favorite saying is one foot in front of the other and go on.

Oct 28, 2015 7:30 PM

I work full time. Have had fatigue for a few yrs now and the pain issues have worsened in last couple yrs. I am at a computer most of the time. It is hard to sit in chair when hips and back are lit up in pain, the restless legs are jumping around, and worst of all is trying to sound intelligent on phone solving problems when in one of my"some on pulled the power plug!" Mind drains! I am just recently takingGabapentin which is doing great on the RLS and takes edge off on pain. My hat is off to those of you in worse pain than me and trying to do more physical work!

Oct 28, 2015 7:57 PM

I am certified nurses aide. ..my job kills me. ...physically hurts. ..I come home sleep. ..eat. ...sleep. ...then back to work. ...I am a full time. ...my Dr's won't let me disability. ..this coming year. ...it will be brought to there attention. ....it don't make plans on days off due to. ...sick to my stomach. .hurting. ..just wanna sleep

Oct 29, 2015 3:22 PM

Holly Marie I feel for you sugar. I was a Certified Nurses Aides for 30 yrs. The last 5 I worked in one of our hospials on the Cardiac floor. We had 55 patient rooms and lots of days I was the only one there. I worked 12 hr days 4 on off then 3 on and 3 off. I developed Fibro in the mid 70's when I got a 3 rd degree sun burn on the beach in Galveston. Instead off the blisters coming out they stayed in. I was one sick cookie for about 2 weeks couldn't wear clothes went with a bed sheet wrapped around my body. Lol I was miserable. Afterwards the flesh on my legs from the knee down when I walked felt like it was beeing ripped off my shin bones. I think that is when my Fibro started. I wasn't dx until 2003 with it. I regress sorry about that. I got hurt on the job in 2001 when I hung the toe of my shoe in the leg of a potty chair that had been moved , when I turned to throw the diaper in the trash can lost my balance twisted fell down over the arm of a tall back chair slid down into seat and hit the floor on my well padded rearend. I herniated L4 S1 disk up ported the nerve. I tried to work in Denile and made it until Feb 02. When I finally realized that I couldn't do it anymore, I would come home and have to crawl up the steps to get in the house,make it to the couch and lay down for about 30 min start having stabbing quick pains in Lower back. Get a Lawyer and file for your disability from Ss. Good luck and God Bless. My prayers and hugs sent your way.

Oct 30, 2015 3:44 PM

I maintain air traffic control systems. Rotating shift work with built-in overtime and midnights on call. I'm bottom of the overtime list so if they can't find someone else to do the overtime I have to do it if I want to keep my job.
It's not easy, I think the shift work and overtime are slowly killing me but I cannot afford to quit. I dont think I could make it past probation if I went elsewhere so I stay where I'm a little protected.

Nov 02, 2015 4:29 AM

Weezie...thanks for your words. .I am tearing up. ..sitting here. ..trying to be upbeat. .yeah get to go to work. ...my mind is trying to say what I want. ..words not. ...it feels so good I am not alone. ..Co workers avoid you. ..so I just keep to myself. ..my residents love me. ..as I love them. ...I have a long week ahead. ...and good morning. .you made me smile. ..

Nov 02, 2015 9:56 AM

I'm literally crying reading all the posts here. 40-something single mom of a grade-schooler, so I have no choice but to work full time. It's so hard every single day. Fibro for 5+ years. And now ex is trying to use my health as a reason for attempting to take custody. He is the antithesis of a compassionate or helpful co-parent. Thousands on custody battle mean I can't cut down on work now. This is my first post. I wish I could personally send some flowers to each of you today (along with some good sleep and meds!). It's both comforting and heartbreaking to be among others who struggle with the same things I do. Peace and pain-free vibes to all!

Nov 02, 2015 2:10 PM

I have fibro and Rheumatoid Athritis and work full-time.. I'm an application developer so 99 percent of my time is spent in front of a computer. Like most I have to work and its not easy. I have to say I've been extremely lucky because I am able to work from home when I need to and my boss has been very understanding (to me anyway but I know ppl talk about me .. im just good at ignoring lol) about it. However, it does come with its down sides.. I feel a lot of guilt for it and I've been passed over for promotions for garbage reasons .. round about ways of them using my health against me. I could see if my work declined but it hasn't but at least I still have my paycheck and most importantly my health insurance.

I wish everyone better days to get through all this wretched stuff we have to go through!

X

Nov 03, 2015 4:01 PM

Love to all who have responded! A single mother w kid(s) and full time work. Don't know how you do it.
Guilt is my middle name with having to take any time off work with my fibro.

Nov 07, 2015 11:05 AM

Even with accommodations at work, there are trade-offs with it. I know I am the "sick girl" and don't get as many opportunities. And I know since fibro is an invisible disability, there are people holding the usual stigmas. Meh. Sometimes I'll take a moment to try and educate when someone makes a comment. Some days I just don't have the energy to be the Jackass Whisperer.

Nov 07, 2015 11:19 AM

Thats awesome Indigo "Jackass Whisperer" .. I couldn't help but burst out in a loud giggle when I read that. I completely understand.. i dont even bother trying to educate anymore. . Ppl pretend they care but most really don't . . There are definetly downsides to work accommodations and unless I find a med that takes away all of my RA flares I will never get another promotion or be able to take on more staff. They just look down on you unless your there 24/7.

I'm way past the point of caring what other ppl think anymore and I'm just grateful I still have my job because I'd have to give up everything I still have left. I've seen (read of) that happening to so many people here and its just heart breaking. I know i would manage no matter what because I have a good family support system but geeze we suffer/struggle enough don't we!

Nov 07, 2015 11:22 AM

You are all very strong and amazing people! ××

Nov 07, 2015 7:40 PM

I am a teacher, this is my first year, and my pain started along with this job. I work 10 or more hours a day, and I am not sure how much longer I will be able to keep it up. I feel like I need to stay for continuity for the kids, who I love dearly, but at the same time I am in so much pain that I feel like I am horrible at my job, like I become too cranky to be positive. I usually sleep all day on Saturday and work all day on Sunday. I really wish I could do anything else, and I feel ashamed that I wasted time and money at the University on the wrong career. It has consumed me, and my health. Sorry for being a big whiner but everyone else is so proud of me, I don't want to be disappointing and tell them that as much as I love my students I am not fit to be a teacher. :(

Nov 08, 2015 9:41 AM

LeotardBanshee, Teaching is one of THE most demanding jobs. Constant sensory input and overload, never a moment of quiet space to take care of yourself, and no sitting down. Like, at all.

You are amazing for being able to do it even for a little while!

There are a million other ways to use your degree as an educator if you decide to step out of the classroom. Or to help kids without being the teacher. Your passions are still there with a million different ways to fulfill them.

One thing is for sure, all of us understand your pain and the limitations it creates. We get it FULLY.

You can only take care of others when you can also take care of yourself.

Sending you peace and so much understanding as you decide what to do. xoxo

Nov 08, 2015 10:04 AM

Indigo, thank you, that was very touching. I feel like this is the first time anyone has actually understood the situation I am in. I am very grateful for that.

Nov 08, 2015 10:11 AM

You are welcome. I've only been in this community for a few days, and i wish I'd found it years ago. A whole group of people who *actually* understand what it's like. Nothing but encouragement and understanding. It's like an oasis. :-)

Nov 09, 2015 7:59 AM

You are all wonderful, and I pray you're able to continue working as long as possible. I had to give up working, and I miss it. I hate being home alone all week. I can't get out by myself now because I almost didn't make it back to my car from the Walmart store. It was a very scary moment that I refuse to risk. I go to short appts only, but my hubby meets me when there's a lot of walking required.

Indigo, I laughed at your "jackass whisperer!". 🙏🌼

Nov 09, 2015 9:21 AM

I worked since the age of 15 to 43 then began having seizures. I then studied a law degree and it all started. Haven't worked now for 4 year's. From being a manager, consultant and trainer to nothing. I have fibro and sure Lupus but tests keep coming back negative. I'm depressed and it's affecting everything.

Nov 09, 2015 10:54 AM

Haha! I have to be the "Jackass Whisperer" for my clients as I am a mental health therapist. Being "on" sucks when you are in pain and exhausted. I do agree with Indigo, leotardB, being a teacher- wow! I could t do it. I couldn't do social work in a school because of all the stimulation. You will find something else in the education department.
I just know I want to keep working because of money. Wish they had part time disability!!!!!!

Nov 09, 2015 9:09 PM

Jesswoo, that would be a blessing to many! 🙏🌼

Dec 09, 2015 9:09 PM

I work the graveyard shift at a casino. And it's hell. I'm beginning to think I no longer have a choice about work because the pain is so terrible. I'm not sure where my life will go with no income and no significant other in my life but the dice have been rolled.

Dec 10, 2015 9:25 AM

I worked at a shop auto industry when this all started. I have fibro, RA, osteoarthritis, COPD and asthma. Along with back problems, cervical stenosis......and a few more odds and ends to go along with all that. They wouldn't allow me to work with restrictions so it came down to me retaining a lawyer. I won. That was back in 2012. I haven't been able to keep a job since. I even spent the money to go to school and get my medical asst licence. I can't get hired there either because my hand and wrists are so bad. Their excuse is that I have become a liability. I'm now fighting for disability. We will see how that goes. I miss work, but I do have my husband who backs me 100%. I'm grateful for him. I definitely miss my paycheck. Cudos to all of you.

Dec 10, 2015 10:46 AM

I work in the architecture field. My work is seasonal. So I tend to have extremely busy summers, and laid back winters. I work in an office using drafting software.

I used to be in a position where we had mandatory 50 hour work weeks for months on end. I never got a full weekend without using vacation. It was high stress deadline based. I would come home and collapse, and most my coherent free time was spent job searching. I almost walked out, but need to pay the bills. Plus the sick and vacation benefits, plus flex time, were generous, so I didn't have to worry about losing my job due to a flare. It almost ruined my marriage.

Now I am in a different position, new boss who refuses to set mandatory hours, plus the position is more laid back. New boss let me come in later and stay later, and is accommodating.

I average between 40-45 hours now. Most of my doctor appointments are scheduled before work, and I have less stress flares. I actually was able to use my vacation for a vacation this year.

My husband has been the reason why I have been able to survive. He takes care of the day to day housework, kid, and livestock, and usually cooks supper. I still come home and just sit in the recliner, bundled in a blanket, but I am engaged, and have motivation to do something most weekends.

Dec 10, 2015 12:56 PM

Wow these are all remarkable to read. I know as a therapist that I am not supposed to be sharing much of my personal life, but almost every one of my clients know I have fibromyalgia. I need them to know because of my heating pad,smelly creams, and for when I have to cancel.

Dec 13, 2015 8:11 AM

As a dog groomer I thought I had to retrain into a more sedentary job. Spent 12 months and $4000 retraining as well as working full time dog grooming. Started my transition into the new career only to discover that sitting still at a desk doing computer stuff left me in WAY more pain. Back to dog grooming with a few less clients and less money. Better to keep moving.

Dec 13, 2015 12:37 PM

I'm not sure if y'all know this, but you can work while on disability. My stepfather is on disability, but is allowed to work up to a certain number of hours a week. If u can do it, it's worth it. I think he'd be a lot more depressed if he couldn't work at all.

Dec 14, 2015 8:50 PM

I've worked a lot before I got the diagnosis first fibromyalgia. Then when the lupus got worse I started losing my hair fatigue was bad I quit. I am a caregiver and medical assistant. Love helping people. But now can barely help myself. Money is real tight. Disability is hard. Been rejected once on my second try.

Dec 14, 2015 9:35 PM

I used to work 60hr weeks managing restaurants...this is when I got diagnosed. I have always been a worker, and couldn't survive unless I took on way to much! Well now that I can't seem to stay awake past 4pm, it's really hard. I always judged my success by my job. Now I feel useless, and think family and friends still expect me to do everything. But I'm trying to change my thinking.

Dec 15, 2015 6:21 AM

It's hard when we define ourselves by what we can do rather than who we are. Take away our ability to "do" and we have no identity.
I also am learning to gently and lovingly say " no" or perhaps " not now" or even tougher " can you give me a hand with this ?"
We all need time to adjust and we are not being difficult or lazy this is just the new me. Good luck with you redefinition

Jan 11, 2016 11:45 PM

I was working as a cook but had to leave because the pain was so bad. Standing all day and running around like a chicken with its head cut off dosent work when you have fibro. I'm now working full time at a group home for mentally disabled adults. It's a nice job to have cuz when I need to I can just sit down on the couch or take a 5 min break. It sucks because we are super short staffed so I work a lot of over time, and it's emotionally and mentally tolling but for me it's worth it most days. I take pride in taking care of and helping the people who have been thrown away by their own flesh and blood because they are diff or need extra help

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