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To work or not to work is the ? with Fibro

emtchickieeemtchickie Posts: 39
edited 06/11/2012 - 8:47 AM in Fibromyalgia
I have read some postings about people working and not working with Fibro. I would like to hear from both sides on how you do work with Fibro how hard it is and how your employer deals with it and what you do. And would love to hear from those that can not work. I know being a nurse/EMT I had to give it up I could not count on myself or trust myself with patients. Some of my flares will affect my walking and end up in hosp. for 3-4 days due to a leg or both legs not functioning case of drop foot or not able to even lift my leg off bed,not even able to put weight on them and be sure to hold me up. My hands will on days curl up into a C position and cant type. Never know what each days brings until I get out of bed if I can even do that. I just want to hear how everyone else copes with this. If I had to rate my fibro on scale of 1-10 10 being worse I would say mine falls into a 7 most days and bad days well couple would be a 15. Will be glad to hear from all of you on your working ability or non working ability. Thanks Lori


  • I am sorry you are having such a hard time! I just read a great article on foods to avoid if you have fibro. I don't have fibro, so can't give ya personal info, but thought you might like the article!

    Wishing you the best!
  • hiya lori
    i'm a non fibro worker...mine started out with medical leave and before that cutting hours...i did everything i could to stay on at least few days..
    but at my job was very physical no lite duty poss..
    I have applied for ssdi but do not have enought credits ...on/off for last 10 yrs kids and back issues...
    I had very hard time with spine and fibro..i also like you lori i dont know what the day will bring till i attempt to get up outta bed..
    I have not given up on not ever working...i am independant rep..(you know who for)and started selling on ebay...so not big money at all...yet
    but sure keeps my fibro brain going..
    I could not drive to a job and sit or stand more than 15 min without extreme pain in legs...
    I'm not giving up hope,i guess its my way of coping...I'm in a bad flare up so having to take alot of meds docs give me...which i hate to take...
    Somedays my brain is just so jumbled hard to stay focused on anything...
    I think depends on each person I can't do much when i'm having to take pain meds...some can work and thats great...i'm lucky today my hubby worked but we never know but for now we are blessed with one of us working and having insurance....
    hugs lori i hope maybe a little of my rabble babble
    helps ya
    love ya gal
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • I'm very lucky to have a job where I can set a lot of my own hours, and just schedule myself off certain days for med appts, when needed. I happen to be a social worker, but I also know that having a job this fleible is rare. Have you tried looking for even a seasonal job to start back in the work field (dont' know why but I assume that you're not employed right now), or a job where you could sit (and also have access to FMLA, when you needed it)? I think that you said that you have medical training (darn this foggy head tonight!), could you do dictation for Dr's offices? Or medical transcription?
  • I did do nursing and had to quit I had a patient fall on me right after neck surgery and started to have alot of probs so doc took me off work and will not release me. She doesnt feel I should be working with not knowing when my legs will give out have had them give out 2x in 3wks and no movement in the one leg for 3-4 days. Even doing a typing job would be a hard one on my flare ups my fingers curl into a C position and I cant type or make alot of mistakes. Sitting and Standing for very long mostly sitting an hour walking or standing might hold up for hour on good days. I have had social workers look into what I might be able to do and the doctor keeps telling them know that I am a liability on their behalf if I would fall and get hurt or hurt another person etc. I would like to return one day maybe once I adjust to a good med that will help me its only been a month.
  • I think it sounds from your situation that your in the boat where its best not to work. Yo don't want to end up hurting yourself even more, or someone else too! :( Not sure if your looking for ideas that help you still feel that your contributing to society...but I bet a lot of the deployed guys and gals would love to receive letters. My state (NH) just had a huge deployment of people ship out, and we're waiting on the word from the families back here as to what they want help with, or if they have an address to send letters and pacxkages to their deployed love one.
    No idea if you already have enough on your plate, but Im just thinking of how I was when I was laid up..and my pain was managed well. Without being in pain, or feeling sick all the time - I know that I needed something to do. And, thinking about how I coudl help others really helped lift my spirits :)
  • Before I retired we had an enforcement specialist with Fibro. I don't know exactly what level she was at, but like me, she was on 300mg of Lyrica a day, and was (can still) work in her position. She is free to sit, stand, walk around and take breaks as needed. Her job is geared around the administrative side of the house if that helps. I hope you find answers soon. Sorry you're hurting. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Lori,
    Only you know what you can do and to some extent what impact that has on your condition and this is about balance and pacing, wanting to work is not always possible that is if a job that you could cope with is available.

    Not knowing how you condition will be on any given day does make that commitment to working a problem as with everyone here and with the best intentions keeping going when we need to stop is not conducive to most working environments.

    Wanting to work does focus our attention in what we may have to do to succeed in this objective and with the right support, job and encouragement some fantastic things are possible. If we can survive pain everyday and many here do then we already have the excess capacity to work in some form, it may well not be the traditional working mode, any benefit from working and being included is preferable to none.

    What can you do, I created a job for myself relative to my limitations and I do understand that this is not always possible but wasting away excluded and watching others lives go past is never easy or simple. Think of all the benefits, I am not going to work because it is easy and everyday I come to that stopping point, each day is a challenge, I have a support worker to cope with the rigours of employment. I have made dramatic changes to facilitate working and even though my functionality is restricted, I will need to be pushed from employment eventually.

    I lost my job at 37, married with a growing family and staying at home was a waste of my talents and all those incapacitated and pushed to the periphery. We all have to be realistic in what we can do; working is about empowering yourself and getting others on your side, a support network and desire not to give in. I would hope that I would employ me and see beyond my limitations, I have a supportive employer one willing to accept my fluctuations and provide a working environment conducive to my own needs.

    The skills and experience here are vast and the plethora of employability a lost asset to every nation.

    Take care you are not alone; many here want to work and are doing everything possible to achieve that noble objective.


  • I'm with you on this difficult descision. I'd love to work but don't know how I would do. And in my case if I go back I lose my STD and LTD which I will need if I can't keep working. What a catch-22.

    John is right about creating a job around your limitations. I'm always watching for something like this but they are few and far between. They also usually take time to build up as watergirl says which also makes it tough.

    I've been thinking about doing some volunteer work now that the kids are back in school. That might give me an idea of just how much I can do. It's easy to feel pretty good when you are sitting home. That's what frustrates me when the doctor asks me how I feel.

    Good luck in your search. I have a feeling that you will find something.
  • Im very lucky to have a job that I can tailor to how Im feeling each day... but I know that this may not always be the case. I used to volunteer a lot, but had to cut back b/c of my unknown pain and fatigue (at that time, before the diagnosis). I still do volunteer, but just not as much anymore. It does raise my spirits and feel like Im contributing something worthwhile back to society :)
  • Thanks everyone.. I went to my family doc that knows me best right now she said until we get it all under control not to work. But would like to see me go back to something she also gave me new meds and took me off all the others that she felt I didn't need. Ugh been rough couple days coming off some of the meds today I feel pretty good (not pissy) She put me on Savella and Ambien along with my valium. I have noticed my legs don't hurt at that 8-9 scale its more now 5-6 which is great. I have a good friend of mine that has a pet store that said she would love to have me come in and help out with the animals (I always play with the rabbits, chinchillas etc.) and she knows that I have this and can't lift more then 10lbs. so I think maybe I will try to go back for maybe 5-6hrs day while kids are in school and see if she will be willing to work around me as an extra. I know nursing/EMT I wont ever get back but hey that was the past and now I can see what my wicked little mind can get me into ..lol.. Mary (watergirl) even thought of the chinchilla farm..hehe..I have 4 of them and they tell me to get some girls so I can breed them :) Feeling better makes a whole new out look for me thats for sure. Who knows what this all will bring but being the old me I know I would have kicked butt at anything that came to me and guess what she is coming back slowly but coming back.. Thanks all again and I hope all of you can overcome this disease that thinks it has the upper hand and can keep us down. :)
  • Hey Barb I know all about those guys and gals over sea with the military. I was a USMC wife for 6yrs and I tell you what it's a tough job for them and us..lol.. I even thought about the Red Cross they do vitals with the truck out in rural areas while doing the blood donate season. We have alot of reserve stations around my area no real bases but I have always supported them. (Plus got many many friends still active in the military I email or f/b. I do thank you for the suggestion thou. Would be a great project for my 4th graders' class to do too :) Lori
  • Currently I am not working not necessarily due to FM, but a very personal choice I made with many contributes from my last job. I worked in a very high stress environment, it was a lot more physical than I had anticipated. I was in a lot of pain more often than not, the pain and stress involved would cause severe headaches nearly every singl day. My work place asked a lot from me including over time. Unfortunately it wasn't a large company and didn't offer FMLA so that wasn't an option. After about three years of hell I said, "enough" and quit on valentine's day of all day's.

    It took nearly a month for me to regroup and rest. My pain level is so much better. Yes I still have days I have to take it slow, but I would say most days my pain is a 3/4 where during my employment I was at a constent 9/10. It was real bad. My employees didn't understand, the people I worked with didn't understand. I'd say "I'm in a lot of pain today" then they'd ask me to do something that required a lot of lifting. I'd do it, then pay for it later.

    Since I've been off I've had very few headaches the one's I've had are mostly weather/sinus related. I've been sleeping and feeling so much more rested. My energy level is up. I would love to continue on like this and my husband has been very supportive. I may look for more work down the road maybe something part time, but for now I'm enjoying life a little bit more. I'm completing so many projects at home that I just couldn't get to when working full-time, I'd either have a headache, be extremely sore, or worn out or all of the above and nothing was getting done.

    I currently am taking Lyrica 75mcg two at night along with my Lexappro. It has definately helped. My pain isn't completely gone, but I'm not in constent pain like I was before I started taking it. If I forget to take it for a couple of days I can tell a huge difference. So, as much as I hate to take meds I take it every night now.

    I think to work or not work is a very personal decision and maybe just maybe simply taking a few months off is what you need. I know its done me a world of good, my attitude is so much better. I feel like a different person. I've been off now for about 4 months and I sit and think why did I put myself through such hell for so long.
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