Having issues @ work with my Fibro & Fibro Fog....

Discussion in 'Fibromyalgia Main Forum' started by cpdwife1519, Jan 5, 2010.

  1. cpdwife1519

    cpdwife1519 New Member

    Hi all, while I am getting ready to resume another 8+ hours at work
    I thought to post to get some insight on how is it people like us work
    =when we have reached that plateau were it seems meds and reg exercise
    and diet do not help as much as they were?
    I am working full time and have voiced to my dr that I feel as if I wont make it
    to age 50 & working full time like I am. If I feel as I do now I know I wont make it.
    It hurts its just agonizing and unnerving the aches I have from sitting ( I dispatch)
    I dont know what to do. I have already req another shift but was told I had to do
    ADA paperwork. I have but now the wait game. I dont know what to do with the FOG
    I get and my partners I have on shift complain I freeze up when I get nervoused up
    over important things that occur each shift not all shifts but some. I cant keep saying

    Because they dont want to hear it?! Should I apply for disability? I am only going on 35.
    I have two younger children and since 2.5 yrs ago on my last pregnancy is when I was feeling
    much worse off. Help someone if anyone can give me advice , thanks so much blessings+++
  2. AuntTammie

    AuntTammie New Member

    This is re SSDI, so if you are talking about disability thru a private company, this may not apply. I applied for it (& got it) when I was 33. I hated to do so, but I am really glad that I did it when I did.

    If I had waited a few yrs, I would not have physically been able to do so. It is a ton of work meeting with the SS person, getting all the records, filling out the paperwork, going to the Dr that they require you to see (they want their own proof), getting family and friends to back up my claims, etc. Physically, cognitively, and emotionally, it is incredibly draining, and I was blessed in that I got it rt away. If I had to go thru all the appeals and stuff that most people do, I would not have been able to handle it. I joke that if you are able to get thru the process than you probably aren't really disabled. (I truly was disabled at the time, so like I said, I am joking when I say that; however, if I had been any worse, like I am now, I truly would not have been able to make it thru the process. I only joke, to try to lighten up what is a very sad situation. The people who most need disability are almost physically unable to handle the process of proving it. They make it way too hard for those who need help to get it.)

    I tell you this to say that if you truly believe that you need it; that you cannot go on the way you are for a lot longer, then don't wait to apply. I understand the urge to hold out until absolutely necessary, but if you do that, you may be seriously undermining yourself. Also, it can, and usually does, take a long time to actually get approved. If you wait until you are no longer able to work at all, there could be several years when you will have no income and only the hope that you may wind up eventually getting approved.

    I say all this with the assumption that you are only considering this bc you foresee a time in the near future when you will not be able to work. Obviously, I would never advocate applying if you do feel that you are still able to work. It is called disability for a reason. (I am not implying that you are trying to get it if you don't need it. I just wanted to make sure that what I am writing is completely clear, and that people know that although I was not in as bad shape when I applied as I am now, I was most definitely unable to work anythign close to full time. I did very much need to be on disability.)

    One more thing to note is that it is possible to be on disability and still do some work. I don't know if your current job would allow you to reduce hours, but if so, depending on how much you make, you might not have to quite work altogether, if you feel up to still doing some work. When I first went on SSDI, I was able to still work on an extremely part time basis. (Well, in reality it was killing me, but I did not want to have to stop working at that time, bc I loved my job. At that time I also had thought and hoped that this thing would be temporary - I hoped to eventually go off SSDI.....not to keep getting sicker.)

    All that said, I want to tell you that I totally empathize with you. You are in a tough place, with a hard decision to make, and I know how much it sucks. I hope that you can come to a decision that you are at peace with.
  3. AuntTammie

    AuntTammie New Member

    You probably already know this, but just in case you don't......SSDI pays very, very little. It is based on how much you have contributed to SS while you worked, so unless you have been getting paid an awful lot of money, your SSDI income will be pretty pathetic. Since I was still in grad school when I started on SSDI, I had not yet had a job using my MA degree, and as such had worked a lot of yrs at low paying jobs. The average starting pay for my career, if I were able to work, is almost 4X's what I am getting from SSDI (and the job I was planning to work at is not high paying, by any means, but would have been better pay than the jobs I had done thus far.....and those jobs that I have worked were still better pay than SSDI).
    [This Message was Edited on 01/05/2010]
  4. cpdwife1519

    cpdwife1519 New Member

    Thanks for the responses I truly appreciate it. I am just exhausted I can never get enough sleep and my labs keep stating even with VIT D taken supp wise I am deficient...extremely under. I will have to ask my primary this tuesday if he advises of anything OTC intead of me paying for a script 5+dollars or more for under 20 pills when I get it OTC for the same units w/more to the bottle.

    W/regards to the GE pills and such Im clueless but thanks ??!!! LOL.

    W/regards to SSI/d my dad gets it and yes it is verrrrrrrrrrrrrrrrrry extremellllllllllllly difficult to get and it was agonizing for him to go through too.........he was on workers comp over ten yrs!
    It was just annoying and draining your right! I am planning my future but I have paid into SS
    for over 10+ yrs and the rate I am at ? about 30k yr. so what are you configuring monthly I would assumingly get?
  5. AuntTammie

    AuntTammie New Member

    Re how much you would get from SSDI, I really have no idea how exactly they figure that out - I know that it is based on how much you have put into it & how long you have been working....and I know that no one gets very much - I worked for 16 yrs (well more than that, but the earlier jobs were before turning 16 y/o and therefor were not jobs that involved contributing to SS) prior to becoming disabled and I was going to grad school at the time I became disabled, so the jobs I had worked were not high paying jobs, but I had put in quite a few hrs at them, and my SSDI payments are significantly less than 1,000 per month.

    As far as the Vit D goes, generally the reason for a script is that prescription vit d is given at a much higher dosage (from 20,000 - 50,000 is typical), and if you get it at the store, it is usually available at amts up to 1,000 at the most....if you can find it in a higher dose w/o a script, or if you don't mind swallowing a ton of pills and if you can get it cheaper that way, then there is really no reason to get it via script

    personally, I used to take vit D supps and was still very low in it when my blood was taken.....I only improved my vit d levels by tanning (my levels are now optimal)....i realize that there are some reasons to be cautious about tanning, but like I said, it was the only way my body would improve, and from what I have read, having optimal vit d reduces the risk for cancer (so the risk is not really what it is made out to be - unless of course you go nuts with the tanning and/or regularly burn yourself) I go about 3 times a week for 15 minutes and I also keep a close watch on my skin to make sure that no new suspicious freckles, moles, etc are developing.....so far, so good, and I have found that tanning helps quite a bit with pain, a little with sleep cycles, a little with energy, and a lot with just having a feeling of well being (decreases depression, increased relaxation)
  6. janenec

    janenec New Member

    I am in the same situation. Full time job and two kids at home. I am 34. My husband is extremely supportive. But I go to work and by the time I come home I am in so much pain and completely exhausted that at times I can't take care of my family at night. My husband has really stepped up, but he works full time too and takes care of many other things around our home. I have fibro fog too. this is not good at work. I have noticed that since starting adderal this has lifted some. I am new to this site, but your story just made me know I am not alone. thank you for sharing. I hope we both get some suggestions!
  7. cpdwife1519

    cpdwife1519 New Member

    Tammie Jane Jammin

    Thank you Girls I appreciate it heading to bed after a VERY long days work...
    I mean home life work and family life in that combo!

    yes noones alone in this we are a team its a team effort here ...one thing though.
    My dr primary that is advised me to make a change in my health and start w/me
    and my career...its hurting my health the stress the pts of the job i.e me being a
    disptchr. Oh I dont know what else to do now and I cant just stop working. Ive
    heard you need to in order to gain SSI? Im so lost!
  8. msnova74

    msnova74 New Member

    I am 35 and work full time. I will tell you what I have used to allow me to continue to work

    The first thing is FMLA. It allows me to be off without penalty when I need to. It also has limitations on lifting, walking etc. It says that I can take extra breaks to stretch when needed. (I keep a yoga mat at work). It also has info about fibro fog, shift restrictions and the like. I have to be on 1st shift b/c I do not sleep well on a normal shift and not at all when I have to work nights.

    One of my job duties is training and certifying people on Hazardous Materials. Now the night shift people have to come to days for me to train them rather than vice versa.

    Once I turned in my FMLA paperwork we went to the ADA. There is a form letter on the government job accomidation network that specifically has to to with fibro. The letter covers everything from written job instructions to seating, to breaks etc. Just copy and paste the link. It has tons of info that will help you. http://www.jan.wvu.edu/media/Fibro.html

    Also you can go to the department of labor website.

    However, to request accomidations you only need to write it on a piece of paper and hand it to them. At that point your employer can opt to accept it as it or request further info from your doctor.

    I did not need any more info because my FMLA paperwork had already been sumitted and approved.

    I feel for you b/c the company I work for is not the most understanding. I get tons on comments b/c of the "favoritism". I can't worry about people like that.

    I have always been open about my condition, and will explain it to anyone that has a question.

    I hope this helps you.

  9. cpdwife1519

    cpdwife1519 New Member

    I am posting my direct email not sure if thats allowable but I am ...I want to connect w/all of you and on a more rdirect line here because w/my work schedule right now and my pain from the FMS I am just a mess...
    bare with me with typos and such lately I have had my hands and forearms freezing on me.
    In the sense of them just numbing and tingling and just not allowing me to pick my daughter up , grasp the steering wheel then it radiates through me to my head causes a headache and then down my spine to my waist which THEN freezes me up and causes even more pain!

    Wth is going on w/me? my fms dr is out on maternity lv and will see her partner in the offc
    this month 27th but I will have to take off work its in the evening and I know I am working.
    So far that is I am on the list. I am a full time police disp. And I dont have a recourse as my primary just told me tuesday " get another position if you can w/in the city" well Cleveland is laying off people so I am lucky I still have my job...we are planning to move this summer for our familys sake to better our living enviroment and I am just basically DEALING w/the stress to get by for the income needed otherwise what am I TO DO?

    Im so against the wall!


    Heather n Ohio
  10. cpdwife1519

    cpdwife1519 New Member

    PS to note my positon basically sts certain requirements when applying for the job through civil service but in my defense I have to object because I did not know noone EVER knows how their illness w/effect their jobs or how they will progress through the months yrs etc.
    I could never have said OK this is going to get better worse ie etccc!

    Does anyone get me?
  11. cpdwife1519

    cpdwife1519 New Member

    Im clueless and my rep , well noone seems to get completely along w/her.
    Right now as I stated out city is going through some crapola with lay offs.
    The Mayor on his high horse with being short w/the city's budget over 22mil.
    So he is trying to dig into the safety personnel which is always WRONG!
    But in my defense ADA superceeds this union Plan per se' stuff....I just want
    to get my self in the RIGHT direction because I seem to get nowhere with my dept.
    People that have been there for years or ones under five yrs for that fact are
    already squaking at people needing first shift because they have illness's well!
    thats life!

    PS I dont have a diary but I do have an online sheet to which my drs were noting my visits and my updates on [This Message was Edited on 01/14/2010]
  12. cpdwife1519

    cpdwife1519 New Member

    I will start my diary this week from this past appt on.
    I will go back as far as dec though because Ican remember at least that much.
    Thank you , I would assume to bring it w/me then when I go each time.
    Also to any other dr appts?

    What is your opinion of sevalla?
  13. pirtpain

    pirtpain New Member

    I know how you feel because I was there too. I would recommend disability at this time. The only way fibro fog was helped was when I stated playing mind games like Suduko or crossword puzzles, solitaire etc. It help to keep my mind sharper than before. The job you have can cause stress in itself and I know that I can't handle stress at all. Get yourself a disability lawyer to do the paperwork. It took me 3 yrs to get it approved however I think by now it may not be so long. Mine was retroactive so I did get a chunk of $ in the end. Make sure that they can't tax it all at once. We had to go back and amend the years that we would have received the $. Also you pay the lawyer once it is finalized not up front which is nice too. You will be able to get Medicare to help with medical bills. GOOD LUCK !!!

  14. cpdwife1519

    cpdwife1519 New Member

    Thanks Pirt for the emails. May I ask this which Ive been hearing what I didnt want to hear.
    " can I work ?" at all until this goes through? I just cannot work I am relied upon for income I have two children!
  15. pirtpain

    pirtpain New Member

    In response to the last post. I would sign up for disabilty through your employer first. Then I would sign up for long term disability. You need a lawyer to do so as it takes alot of paperwork etc. to try for SSI ( Social Security Income ). You will be turned down first and it takes years. You have to apply for state disabiltiy first which can be done through your empolyer with a dr. note. The only thing that has ever helped me with brain fog is doing puzzles such as Saduko and crossword puzzles. Anything that works your mind. I don't know if that would have made a difference when I was working and could not think straight, but you can try it. I went on disability when I was 41. I don't regret it at all. I had to do it because I was so sick! I had not been diagnosed yet and was not on meds yet. After the disability is gone your SSI takes over. Even if it takes years, you do get retro $. Good luck!

  16. cpdwife1519

    cpdwife1519 New Member

    There is only paid sick leave if I was able to get some accumulated.
    I have used some due to the fms and cfs and I started back July 09.
    I have only 8 hrs left and we acrue 10hrs per month. Otherwise, I am stuck.
    I have to work its like I cant though I cant get past the fatigue and
    -going into work I am ok its past three hours into it I get tired and drained.
    I start having my neck pain the headache then the body aches all over.
    then it radiates into my legs and stops and shoots right back up into my back.
    I have to work to support my two children. So what is amom to do!
  17. cpdwife1519

    cpdwife1519 New Member

    my issues are that I am coming off being rehired I was off two yrs due to having my daughter,and I dont want to have anyone know of my personal info-if I seek advice
    through the union there are reps at my dept that will go around telling others my issue.
    Business info etc. But thats the least of my worries but the main issue is that I cannot
    just take off work and stoip work at that to file ssdi. I just cant. I have three people depending
    on me for income. Im so torn. Ps I have aflac and medical yes but life insurance through erie ins group.