Poll: Treatment at Work With Fibromyalgia & Chronic Fatigue Syndrome

I work for an orthopaedic company, so you’d think that inherently all would be sympathetic to my FMS, but it’s just not something people understand (or most take the time to understand). There are a lot of people who do care and ask often about how I’m doing, but I think those that count the most (i.e. my immediate co-workers, boss included) do not seem to care or understand. It seems that they’re probably tired of hearing me be negative.

So this brings up a point I think about often: how do we support ourselves financially and support ourselves physically? I feel like those two aspects of my life are constantly competing. I know it’s a balance and it seems that most of FMS related stuff I deal with is related to being out of balance.

It is quite difficult to work with the pain caused by this disease and therefore, we must use medicines such as vicodin or proviron although mentioned some sites online as Findrxonline that are dangerous due to side effects.

I needed to retire – early retirement – due to my fibromyalgia. It was my choice, but if I had stayed I think the staff cuts would have included me.

im 32..i cant retire..but working the way im working..and not being able to work from home..is taking a toll on me

Why isn’t there an option of “On Disability” or “Had to leave job”? I have been on long term disability since 1994. It was my supervisor at work that suggested I apply for short term disability which then turned into long term disability. I’m very lucky that I had disability coverage at work and that I was approved through Canada Disability Pension (after a year or more of appeals). I’m pretty sure my work suggested I apply for disability so they could fill my job since I had medical reasons as to why I was missing so much work.

I worked as a Customer Service/Sales Trainer within a call center related to medical devices. It was a high pressure position. I became ill & it took me several years to get a diagnosis. I was struggling. I never took more time than was allowed. However not ONCE was I advised by HR about my rights under FMLA. I finally had to take a short term disability leave because the pain became so intense. During this time I was told I could either take short term dis. or FMLA but that I could not take them together and that short term dis was the only option that allowed me to get paid. I was sick, depressed confused. So I believed them and didn’t sign up for FMLA. When I returned to work they fired me. Several months later they fired another woman for the same reason and did the same thing to her. I could have sued them, but I didn’t want any part of that toxic company anymore. Also they def. had more money then me to spend on attorneys. As far as a I know they are still treating employees this way and not notifying employees of their rights. It’s a hateful, sick way to run a business. I have lived & I have learned.

Worse than being an employee is being self-employed. Clients could care less about your personal issues, all they care about is getting the work done regardless of how you feel. Besides, with fibro, you always look fine — unless they’re sensitive enough to look at the pain on your face, which was very rare. Just have to suck it up for meetings, etc., knowing there’s payback latter.

I finally had to give up and close the business, as much as I loved the industry I was in.

I have never told any of my employers I have FMS or CFS. I just suck it up and deal with the pain and fatigue. I am single with no one to help me. I have no social life because it takes all the rest of my time to recover and get basic every day necessities accomplished. I do have a fairly good doctor who helps with the pain meds so I can keep on going….

For the past 21 years, I worked as a paralegal/office manager/personal secretary to the lead attorney for a law firm. Although one partner specializes in PI, Workers’ Comp, has handled many fibro/CFS cases and was actually with me during one of my eight specialists diagnosis, the other partner, my boss, does not believe in fibro. “You don’t look sick to me”, as we have all heard. In November, my secretary died from pancreatic cancer. She was one of my very closest friends. In addition to refusing to hire another person, I was told that I was expected to do my job, and assume all of her duties as well. 3 years ago, he began to bitterly complain that he was paying me too much money. I starting taking Mondays off without pay, When faced with the prospect of having to assume additional duties, I responded that I could not, even if I was not sick, do a double duty job and still deliver what he wanted. This man never wrote the first letter, all court documents were written by me, all bookkeeping, his personal business and his family’s personal business. He became very verbally abusive to me. He would tell me “I will walk out of here and never come back”, which would mean the loss of my job. I am 60 years old. He is 63. He was angry with me because he said he couldn’t retire until I was 62 and eligible for SS. He began to tell me that I “was not worth what I’m paying you” He would go from telling me that I was a wonderful employee and friend to horrible verbal abuse in the bat of an eye. (Cont…)

(….cont)He told me that i was not getting my work done, even though he could not tell me what I had not done. He just, as he said, “felt like” things were not done. After I told him that I could not assume the extra duties, he screamed at me “that is what is required by this job, because I said it is. If you can’t handle it, I’ll find someone that can”. Finally, After years of his verbal abuse and unimaginable stress, he began to verbally attack me one Friday afternoon in his office. My first thought was, “this is the last time for this”. I walked out, and have not been back, other than to gather my personal things from my office. My husband and grandson are estatic that I am home now, my stress level has diminished by at least 90%, I sleep better and the pain level is much better. I am now able work in my yard, which I have not been able to do in years, I can rest when I need it.I have my dignity, and my pride and feel that I am getting back a bit of the old me. For those of you that are in an abusive work environment, you don’t have to live like that. I thought that I had to, but have found out differently. Do what you have to do for YOU. There are other jobs, other answers. Take care of YOU. Nobody else can. Leaving my job did not get me and neither will Fibro!

He told me that I was not getting my work done, even though he could not tell me what I had not done. He just, as he said, “felt like” things were not done. After I told him that I could not assume the extra duties, he screamed at me “that is what is required by this job, because I said it is. If you can’t handle it, I’ll find someone that can”. Finally, After years of his verbal abuse and unimaginable stress, he began to verbally attack me one Friday afternoon in his office. My first thought was, “this is the last time for this”. I walked out, and have not been back, other than to gather my personal things from my office. My husband and grandson are estatic that I am home now, my stress level has diminished by at least 90%, I sleep better and the pain level is much better. I am now able work in my yard, which I have not been able to do in years, I can rest when I need it.I have my dignity, and my pride and feel that I am getting back a bit of the old me. For those of you that are in an abusive work environment, you don’t have to live like that. I thought that I had to, but have found out differently. Do what you have to do for YOU. There are other jobs, other answers. Take care of YOU. Nobody else can. Leaving my job did not get me and neither will Fibro!

Geek Squad/Best Buy worked with me in every way they could before and after my diagnosis. It was evident that I was struggling and putting in a great effort every minute I could and for that they understood. Even when I walked into HR with resignation papers they tried to talk me out of it. Ultimately, working 4 hours a week wasn’t paying my mortgage and I was forced to go on SSD. The day there is a cure or I go into remission is the day I go off of SSD and back to GS/BB. Not giving up is the key to chronic pain!!!

I suppose it’s going to depend on the company and employee: every FM person experiences their symptoms slightly different, so there’s no chart for your employee to go by that says you will be off this or that day or how long your symptoms will last. This has to be the most frustrating thing for an employer who counts on your work.
Know your rights with your company (ie: FMLA, LTD, STD, etc) and use them appropriately with your physicians and most companies will see your valid diagnosis and will work with you.
NOT going to work for a week because you’re afraid to hurt the week after isn’t the answer either. Learn to pace yourself, adjust your finances, and maintain your pain to as much a tolerable level as possible and you should be able to get through life fairly happy and hopeful. Whatever you do, never give up your fight!

I am currently on STD. I was made to go to doctors that were hired by my workplace. They came back that I do not have CFS or Fibro and that I have to go back to work. I am ok with going back to work part time (which is what they want now) but am unsure if I should fight them on the diagnosis they gave me.
I am in Canada and any suggestions would be great!

I have had trouble keeping a job my entire life due to fibromyalgia. I was not diagnosed until I was in my early 30’s.

I started working from home part time to make ends meet as a single mom. Have been working full time from home for the last 7 years. If anyone needs some resources or help with starting to work from home, please feel free to email me through here.

Another question to be asked is about how family interact with a fibro patient. The reaction I have had from my own family has been the equivalent of what I have read here.

At first, they were very supportive and understanding. The general reaction to my diagnosis was that it explained a whole lot about my past to that point. Now, it’s very different. My children have been told by family members that I use it as an excuse. My blood family hasn’t talked to me in years because they believe I am just an irresponsible, lazy, and inconsiderate person – which is as far from the truth as you could get.

I worked fo r a company that had no sympathy for my illness. I would have to pretty much crawl out of my car at home after work. I finally got to the point where I just could not work anymore. I luckily was able to get my pension and SSD after three years. I guess my biggest complaint is people thinking if you don’t look sick you aren’t. I still after all these years have people say well so and so has it and they work. Well this so and so has it and I worked for over 10 years with it until I just couldn’t do it anymore. One thing I am thnakful for is this website. It is so nice to know it isn’t all in my head and alot of the things I experience is part of the Fibro. It is helping me understand so much more about this illness. I am grateful that I do have a wonderful specialist that really is helping me get through each stage I go through.

Even if we don’t use Lyrica or Cymbalta, we could thank them for all those tv advertisments because they have “educated” the public that Fibromyalgia is a real disease and that we are in a lot of pain. So I usually hear,” Oh you have THAT disease; I’ve heard it is really hard to live with!”

I have had difficulties holding down a job and/or going to school for my entire adulthood as I got sick in my late teens. However my symptoms have not been serious enough to get a disability pension, or I wasn’t eligible financially.

Since I’ve been forced to work and while my family has been far from supportive, they would be supportive of my seeking education so I have professional degrees that would earn me a higher income (which sort of helped).

Keeping it to myself has been my strategy. But since I have worked largely in health care environments, which were not great places to be. Health care can be punishing work environments for anyone, let alone someone who is trying to function with a chronic illness that their co-workers think is bunk.

Over the past 15 years, I am known for being talented at what I do, and have had difficulty not getting jobs. Keeping them is another matter — fatigue, inability to cope with stress, +++ medical appts., poor memory and/or communication from time to time has damaged my career prospects and kept me jumping from job to job. There have also been a couple of instances where I missed a job opportunity because my reputation followed me.

My other problem has been my disgust with the health care system that I was working in. I got to a point where I couldn’t hide it anymore and obviously this didn’t go over well with the higher ups!! The last job I had I was one of a round of layoffs, no doubt to my inconsistent performance, their complete lack of support, and the fact that I was open about what I saw as ridiculous problems — as a patient it makes me sick (ha ha).

So since my health has improved as of late due to some new treatments, I am starting a new full-time job in a new field. A fresh start, I hope!!

It’s amazing the way people look at us sometimes. My mom actually referred to me as an antisocial sociopath lol. I have really become a hermit since working from home 7 years ago. Dealing with people (both professionally and personally) has definitely become one of my less enjoyable tasks. Most people just don’t understand no matter how many times and ways you explain and show it them. Becomes less and less worth the effort.

This site is a nice way to know we are not alone in our struggles. While my site is still being built, I do have the forums up and open, and a messenger system if some of you would like to come there to have more in depth discussions Please be warned the site is a community and informational site about medical marijuana and its uses. I have been off all my meds for about 6 years now

You forgot a category, Adrienne, “asked to leave.” But it was stated in the kindest of words, “we just think this is the time for you to take care of yourself.” This was after my pain doc refused to complete my app for short-term disability because he didn’t want to get sued. He said, “it’s not like you work construction or lift heavy loads of materials.” Frankly, I think that’s the “party-line” for UNC medical school!