How to deal with FMS Dx and WORK?

Discussion in 'Fibromyalgia Main Forum' started by megchampagne, May 4, 2006.

  1. megchampagne

    megchampagne New Member

    Hey guys... Sorry this is so long, but this has been on my mind for some time.

    Just got diagnosed with FMS today, though my PCP supposed I had it even before I went to the rheumy.

    I have had problems basically ever since I started my job roughly two months ago. This is a GREAT job in a stable industry with wonderful people. However, my physical problems have already caused a rift.

    I have had muscle spasms since my 'teens, so aches and pains were not breaking news. But for some reason, this job REALLY flared up my symptoms. My job duties basically consist of filing, moving files around, taking inventory of file rooms, creating folders, etc. Pretty basic, right? But these things were causing me immense pain, even crippling pain to the point where I could not get out of bef without my husband's help one morning.

    Per my mom's advice (she is an HR goddess) I contacted my HR department last week and told them my problems have been dehabilitating and that I could not do any task that would strain my body in any way. I alerted the HR lady that I was gone so much due to the aches and pains my job duties were giving me, and that I was also seeing a doctor to obtain a diagnosis. She was extremely understanding and told me that if I had to, I could literally sit at my desk and surf the internet until my section supervisor gave me an assignment I COULD physically do (my section supervisor learned about my physical problems before HR did, but still gave me these physically exhausting assignments). (Also, I wonder what stance HR will take once they receive word of my diagnosis, which I WILL be giving them so they know I am not BSing.)

    Yesterday, my big boss called me into her office and told me that I had to stop being gone so much. Admittedly, I only put in 25 to 30 hours per week which is technically part time, but I am getting all the full time benefits this place offers which there is an abundance of. She explained to me that everybody is going through a lot -- post-Katrina depression, rebuilding, etc. -- but that I had to figure out how to spend more time at work. I can see her point of view, and if I had an employee only putting in 5/8 required time per week, I'd probably can 'em.

    My problem is this. I do go to work EVERY morning, even if I have to force myself. I do this to show my employer that I am at least taking this job seriously enough to show up every day, even if I am late (it's a 60-90 minute commute after I manage to get myself out of bed!). However, I am wiped out by the middle of the day, and typically leave between 1 and 3. There are a couple of days I have stayed until 6 to finish major projects. But to be honest, I am in so much pain, even just sitting at my desk per HR's instruction, that it is almost unbearable. And you would not believe the nasty glares I get from my coworkers.

    I would not have a problem with finding a part time job somewhere, but, I know that Social Security is sketchy about their stance on whether or not FMS is an actual disability. The State of Louisiana also has some pretty stringent Medicaid requirements, and especially after the thousands of people who took advantage of the system during Katrina, they are peeling more film off their eyeballs and REALLY staying on the lookout. I'm afraid that if I significantly cut down my hours, I will not have ANY income, and will not be able to pay for treatment, etc.

    Also, I am under immense pressure from my go-getting parents and hard-working spouse/in-laws to have a good job and make decent money. I feel that if I cut down or terminated my employment, I would be rejected, or seen as taking advantage of the situation. I live with my in-laws, both of whom are disabled, and they can manage to work full time. Of course, I feel my "disability" is of quite a different nature than theirs, but I wouldn't be able to explain that to my husband... See my post on Pam's thread.

    What the heck do I do here? I'm contemplating contacting the Department of Labor to seek guidance. If I don't get any type of answer, I'm thinking of consulting one of the attorneys at work (we have a labor section) to find out more about La.'s labor laws, Medicaid laws, etc. But, both solutions just feel too "pushy", and I'd much rather keep my job so I don't die of boredom.
  2. megchampagne

    megchampagne New Member

    Wow, Gigi... Thank you so much for sharing your story with me. I am so flattered that I already got a response from somebody! I find your story very comforting and I thank you for sharing it.

    I also thank you for your opinion about holding off on telling HR about the diagnosis. I wonder if I could get my rheumy to write a note detailing my SYMPTOMS and limitations (i.e. cannot sit for more than 45 minutes at a time... cannot lift more than 10 pounds... etc.) -- I think I will ask my mom about this.

    I am so sorry your employer was downright abusive like that. Some people are just totally incompassionate. You'd think that if your employee told you about some disease they had, you'd AT LEAST go through the motions of researching it to get an idea as to what type of disorder it is. Fortunately, I do have a couple of people I work with (not superiors) who I have talked with about my progress, and one lady has gone through similar issues, but still -- especially being so young in a workplace where everyone else is considerably older -- the isolation can sometimes be as bad as my physical pain.

    It is true, I think, that if an employee becomes disabled, it is not grounds for firing them. However, they can kind of work around it if they give you advance warning, like "Miss one more day and you're fired" -- law is definitely not in favor of the employee.
  3. tinypillar

    tinypillar New Member

    I recently got a new job (Nov of last year) and even though I felt I was in somewhat of a "remission", I had a really bad flare about a month and a 1/2 after starting.

    I had another health problem come up, and the medications that doctor gave me didn't agree with me, and sent me into a full blow flare. I am incredibly lucky though, my employer allows 3 months of medical leave per year. Since I was new I didn't qualify (need 1 yr of employment) for an "intermittent" leave (you can take medical leave on and off through the year, but still 12 weeks max), so I had to take the 3 months off all at once.

    This was a life, and job saver. I had no problems in doing this, as the company I work for handles their own disability claims and payments. It's similar to getting state short term disability (at least in CA), but you deal with a small company and not the state. They recognize Fibro as being a disability - medical proof consisting of "process of elimination" tests.

    My HR department does have a copy of my doctor's form that states what my condition is (fibro, pain, depression, and dysfuntional uterine bleeding are all listed), however I have not received any backlash from it. I voluntarilly gave them a copy to verify my dates of doctor approved disability.

    I tend to describe Fibro to those that don't know as a disease that effects my muscles and causes them to spasm/be painful, causes me flu-like fatigue, or great muscle weakness. Arthitis of the muscles is another way I describe it. I try to stay away from describing it as any sort of mental/nervous disease because that tends to paint a very different picture than how I feel.

    What I would do is see if your employer offers any type of medical leave (also called FMLA) and what you need to qualify for it. I'd refrain from giving out too much information to your co-workers, but be honest with your boss.

    Get copies of any type of disability or dr's notes you may need to have filled out. Make sure you keep any dr. apts you may have for your FM. You may need to explain to HR or your boss that their isn't a set protocol for relief, and your doctor will have to trial and error with you to find out what works and what doesn't.

    Check out any ADA laws for your state, most employers where I live are required to provide reasonable accomodation for employees with disabilities - this includes desks/chairs/computer equipment to be properly adjusted to not cause stress to your body. Make sure you get in writing any "disciplinary" actions regarding your attendance.

    I am probably leaving a bunch of stuff out, just got home from work and I'm beat right now :) Good luck, and keep us posted about your situation - you are not alone!
  4. crystalcavies

    crystalcavies New Member

    sorry to hear you are struggling and that yo have bene dx'd with fm.

    I fully understand exactly were you come from with you worry about giving up your job and under pressure from family in laws.

    fm is very disabling I have very severe and can't work at all, although some people with alot or slightly milder versions of this debilitating condition, manage sme sort of work.

    if you push yourself because your family are expecting you to work and your frightened of what they might say, I'm sorry to have to say this, but you could end up alot worse off, the stress of families and how they percieve what is and isn't a disability can be really horrible to cope with, ontop of the condition.

    ask most people who is more disabled a person that has a full social life, otherwise healthy, but has no use of their legs, so is wheelchair user, or someone that has little or no social life due to their symptoms, can't work, isn't that well, but looks visiblly perfectly well and maybe uses a walkig stick to get around on their better days, their worse days they remain indoors in bed, because the visible disability stands out peole will say the wheelchair user in this case. but they are so far wrong. someone that is otherwise perfectly capable of working, a full social life, doesn't feel tird al the time or in agony 24/7, is disabled yes, as they have no use of their legs, but as for quality of life, the fm sufferers with severe fibro is actually more disabled, but visibly appears less.

    I suspect your inlaws are chair users? or have some visible disability. someone can look pretty well, but actually be dying of cancer, but because they look fairly ok, they will be considered fit and healthly. if you are struggling, please try not to beat yourself up, but with any long term health condition you need to grieve for your 'healthier' self, until you have you will not be able to accept what you can and can't do, and its not going to be an over night fix.

    saddly like me you have family that you feel or you know will still expect you to do as you did, or 'pull your socks up' fm also hits the family, some people will take it hard and sturggle to come to terms and even think if they pretend you havent' got it, it will magically go away, others will be funny and distances themselves, either frightened of hurting you by saying the wrong thing, or thing you are pulling the wool and claiming sickness to get out of working/working so hard. others they have firm beliefs and its not easy to sway them to realise that a person can look well, but actuallt be that disabled, without looking disabled. and then you will get those that want to help, the positives, try to do as much for you and offer their support, time and hope you will ask them, but will offer, even if you snap their head off, cause you are still coming to terms with needing sone help with something and the feeling of having to ask or accept, makes you feel you are worthless. far from it, i'm sure you have put in alot of time for others, now unfortuneately, you might not be able to for your own healths sake and please dont let them bully or make you feel guilty so you go and do something,

    cause I tell this form experiance, i never had someone to guide me though any part of it to start with and I forced myself to 'help' as i used to and oh boy i paid dearly, i found that it took me longer to recover and also that having done it for them, they then used that as a tool to really make you feel guility and you find yourself just saying 'yes I will help you decorate the lounge' just for a quiet life, you realise you can't, but you push yourself, because you feel you 'promised' them and your nature is not to let anyone down, no doubt? most people with fibro were over achievers, hard working and put others before themselves more often than not and also enjoied being the 'carer' so changing roles now, is not simple as changing a toilet roll.

    no matter how hard some people make it, if you know you can't do something or that it has made you suffer baddly in the pass doing it, just say no and do not allow them to take you on a guilt trip, not easy, but give in and you will suffer with your fibro the more bad flares and over doing it the more you risk having to give up more than just a job and a few bits of help, you might find you have to almost re write your entire life as to what you can now do.

    you don't need to explain. if they say 'well yu look ok' if they are not a dr, ask them 'are you a dr?' when they say no, you say 'well how can you diagnosis or understand how this illness is affecting me' looking well and feeling well her 2 different things.

    if they say 'well you did it last week for me, 2 days ago for me, so why can't you do it know' 'sneer!'

    you can say 'yes I did, but if you remember I spent all of 2 days confinded to my bed and missed x that i had set my heart on going to see/do and the info on fibro states that if something is affecting me that much I must not do it, because I could end up with a flare up level becoming a more perminant level. and that is selfishly unfair of you to expect me to risk putting what ability i still do have in danger of becoming alot less.

    I mean if they gave a family member some peanuts and the person reacted badly to them, their face and lips puffed up, they would be very selffish of them to give that person peanuts again, so they could watch them suffer or allow them to suffer again. because the next time arund the reaction will get bigger and the person more sesitive to them.

    somewhat occurs with fibro flares, ok we are not allergic to housework say, but the fm body that over does say some housework, will flare up and take a time to recover, if you then push yourself or someone makes you feel guilty into doing it again, they are doing no different to forcing yuo to have the peanuts, knowing they make you ill, in the end just as were peanuts can become a major allergy reaction, too many flare ups trying to do a particular job for too long or at all, your body is at risk of perminant damage, making it more and more prone to a flare up, for less and less amounts, like with the peanut allegy, the person might at first reacted mildly to a small bit of peanut, not one noticed much, next time, having eaten some, a slightly lip swelling, then full lip swelling, then the muth, and face and then all the face, then the neck and face and so on.

    Pacing is important. if you need a rest even if you for only 5 minutes of something left, housework isn't that important that you must finish it all now, when you might find taking 1 hour to dust what you can is better then trying to push for 2 hours to dust and also get polished. when maybe a 2 hour rest or short sleep, gives you a boast to complete the polishing bit 3 hours later. you might find splitting the tasks easier to manage more than trying to get all done at once and finding youcan't do anything at all the next day.

    anyway appologises to you for a long reply, but hope it helps and remember you can't get having fm, so try not to let anyone say your faking it, playing on it. their are plenty of websites they can read if they can be bothered to if they reallt do not believe you.

    take care and soft fm hugs


  5. megchampagne

    megchampagne New Member

    You rock!

    My mom has been supportive about it and is RELIEVED that I finally have a diagnosis. She suggested I sit down with the head of HR next week and explain to her the nature of my illness and that there may be very odd times when I'm feeling great and not a lot of symptoms bother me, but that if I have a flare up, I may need plenty of time off. I.e., I just had a major flare-up lasting two days during which I could barely walk, but I still went to PT and work in the morning.

    I do have one coworker I am very comfortable with telling about this since she has had RA since whe was 17, so she was very sympathetic and asked me more about what FMS is and what makes it different from RA and CFS, etc. So, I figure even by telling her about it, that's a step -- if I'm gone one day and somebody complains about it, this lady can say "Meg is probably feeling very badly today" and the other people can back off...

    By the way, my husband is a waiter, so he does not have health insurance. Therefore, leaving my job and NOT having health insurance is not an option. However, if I worked PT or even not at all, he makes a decent enough amount of money that we could possibly afford our own insurance from a private carrier.

    - Meg

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