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Can people work with FMS
24 Replies
axxie - January 19

Hi was diagnosed not long ago, and I can't work, I'm not reliable and can't remember anything, even if my life dependent on it.

Is this normal? Can you actually hold a job, because at the moment I'm too exhausted, I need my naps during the day....

 

Lenzi - January 20

I am tired all the time too. A lot of people work with FMS, but I can't. You should talk to your doc. about getting on disability. I know that you don't want to hear that,but some people are worse than others and are not able to function and be reliable. Some days we just aren't able to do it and sometimes a flare up can last for weeks at a time. Also the memory thing it is called fibrofog or something of that sort. Your short term memory is shot. I have to use sticky notes and a note pad to remember things. Getting organized and keeping list of everything that you have to do will really help. So anyway I would check on the disability thing at least you would have some sort of income coming in.

 

axxie - January 20

Lenzi, thank you, that cleared up a few things, I'm really bad with short term memory and thought maybe I was imagining things. My husband is constantly telling me to do something like pay a bill or stop the daily newspaper, here I am weeks later and I haven't done a thing. I wake up when I wake up and I start my day around 4p.m. I sleep until then. My back is not hurting me as much but I have no will power to do anything. I look outside and find it's a beautiful day and I can't even go out, I keep saying later, later. Maybe I'm still depress or maybe the sleeping pills are not helping me with the cymbalta. I'll have to go see the doctor and see what she say's.

 

pittsy - January 29

I have been running a daycare and I have fibro....I ran the daycare before this God forsaken condition hit me though, I used to be the best at it!! I used to have all of the energy in the world and now I can tell you it is really hard. I think I am at the point though where my body has finally had enough. I take naps with the kids when I can and I am lucky enough where most of the time I can rest on the couch after they leave but I am trying to get on disability! My body is at its breaking point and to make things worse I live in MI and it has been a bitter cold winter here.....

 

axxie - January 30

Trying to get disability, some hours are good, days are mostly for resting. Feel like a veg if you know what I mean. I'm on symbalta and it helps, I go to the chiro once a week, after the treatment I feel good for a few hours and by the next day, I'm at my lethargic state. Winter are a big pain for me. I sleep only when I take my trazadone, otherwise I don't sleep. Hate it when the weather turns real cold, I seem not able to function well on those days. I should go back to live in Texas, maybe the hot weather would be better.

 

JOEGIRL - February 18

Iwas working a full time job until I get hit with this. I am working part time now and it's hard sometimes but I refuse to give up. I like working and I need the money. It cost to be sick you know. Like I say a lot. A girl gotta do, what a girl's gotta do.LOL

 

13tracy13 - February 18

Fibro effects everyone differently.
I suffer from fibro, the fatigue, fibro-fog and the pain are so unbariable at times I don't know how I'll cope. But for me, not working is not an option. I work 40 hours a week, I am a college student working on my degree and I have 2 great kids, 10 and 2. I get more rest at work then I do at home chasing a 2 yr old. For the memory issues, I keep post-it notes handy and I write everything down.If it doesn't get writen down, it doesn't get done.
Everyone has to learn what works for them and go from there. I have a desk job, and it would be even harder to work if my job was more labor intense.

 

Oksana - February 24

Hi I am so glad that this website exists. I will be visiting it each day. I was hit and dragged by a car in 1999, married in 2000, inherited my husbands two children who lived with us for seven years and lastly dealt with a terrible ex wife who caused us much stress. I also have Post Trauma Stress Disorder. In 2000 and 2001 I did some temp work and that was difficult. If anything emotionally because I do not handle stress well. I also developed early menopause. I need to go back to work and I am terrified, due to the brain fog, pain, tireness as well as a great inability to handle stress. I used to be a very efficient office administrator and manager while sent on a job in Ukraine. I am proud of my achievements and now I feel very low and down on myself as I cannot do that which I used to. I will try to work, although I will first try part time. I will wait until it gets a bit warmer as the cold is quite a detriment. I wish all of you well and there must be a silver lining coming our ways. Blessings, Oksana

 

Rabid1st - February 24

I have been working with it for a number of years. Slowly the amount of things I can do and the amount of rest I need has increased. I can be injured so easily and it takes forever to get back to any function. The question of if I can work or not is a huge one for me. Not only do I come from a family with a very strong work ethic, but, like many other people I need to work to survive. I have no savings. I have lots of outstanding medical bills. I have no real support structure I can turn to if I lose my job and I'd have no insurance to continue treatments.

But survival finally becomes this issue that is crushing you and there comes a time when you just can't get up anymore. I have hit a wall with my health. We have tried so many things and I simply can't complete a 40-hour work week. I try and try and try. So, my doctor asked me to go to 32-hours...but even that is problematic when it comes to reliabilty. So far, four weeks into reduced hours, I'm still missing time. I too don't know what I can do about the simple fact that some days I am completely unable to get out of bed or to think clearly. I give myself these lectures in the morning...I imagine if there was a man with a gun there, like if I was in a prison camp, could I get up? If I got up once...could I keep doing it everyday? Honestly, I think I would be shot dead in that situation before too long. I think the time when I can force myself to my feet despite pain, stiffness and fog is past. And if that's the case...maybe I am disabled to the point where I should stop working. But I have no idea how I would survive...I've asked about disability but nobody can explain about how you actually get it. Do you really just ask your doctor and they help you? Mine always want to give me experimental medication.

Rae

 

momerath42 - March 1

I am a high school special education teacher. I work primarily with students who have autism, emotional disturbance, or behavior disorders. I love what I do, but I come home every day exhausted. I take naps and sleep most of Saturday and Sunday. I worry about how I will be affected 10 years from now... (it's been almost 10 years since I was diagnosed, and my tolerance for activity has decreased).

 

MaineLady - March 1

I have been living with fibro for three years now. I just landed a job at a spring water bottling plant, three 12 hour days, and go to school for medical assisting 4 days a week. The pain is overwhelming at times, but I keep reminding myself that in 9 months I can work full time in the medical field...just hang in there until then. I use a 50 mcg. Duragesic patch every 72 hours, and take Ambien to help me sleep. I have Vicoden for the break through pain, but try not to take it unless absolutely necessary. I am keeping on top of things, but the pain is sometimes more than I can take. How much longer I can go on like this, who knows?

 

tnichel - March 1

I work a 40 hour work week. I've been diagnosed for a year. I've just learned to make sure I carry my bag o treats with everything I may need for a unexpected bad fibro day. The meds made a big difference in being able to get through the day. Still I have days were I ready to pass out at my desk. Closing my eyes and resting for 5 minutes usually helps. It sucks but I would never get disability at this point as I'm don't have it as bad as many on this site. I've informed those I work the closest with so they know I'm not lazy or crazy.

 

axxie - March 2

If any of you are looking at applying for disability, you may want to check out from the library or buy this book is has a whole chapter on disability, applying for benefits, general information, qualifying for benefits, starting a claim filig process, the forms, the review process, what to do when your claim is denied, where to find benefits and services in your area, to emergency or short-term assistance, financial asssitance, employment insurance worker's compensation, medical assistance, long-term assistance social security disability insurance, suppplemental security income, how to describe functional difficulties, the FMS and Myofascial pain functional questionnaire. This book is worth its weight in gold, especially when you need to understand your problems and how to related it to your doctor, so you are not being denied medication. The book is call Fibromyalgia and Chronic Myofascial Pain, 'A survival manual' by Devin Starlanyl and Mary Ellen Copeland. The manual cost about 25.00 worth every penny, especially if you are looking at applying for disability or just plain asking for a little help to get you through the pain. I urge you all to buy this book. It was It'smewayne that got me to get this book. I know much more about my fibro and what I can do to help myself with the pain gets bad.

 

Kristina17 - September 7

I'm 24 and have had pain for 8 years, increasing rapidly in last year or so. I am a high school teacher full-time and also a full-time uni student this year as well. I get really depressed if I'm not busy doing stuff academically all the time and I financially can't quit working but it is becoming increasingly harder to work. I am getting foggier all the time and a lot lately I have been stuck for words or thoughts, unable to even speak really. I have Asperger's Syndrome as well and it really takes its toll on me. I'm so unsure of what I should do. I'm too young to quit working but I get so so tired and disorientated. I am exhausted physically and mentally. I need help and advice.

 

m.e. - September 7

Hi Momerath42 and Kristina17 and all, I too am a special ed teacher (age 44, soon to be 45). I have been very successful in this and my previous jobs before teaching. It is a difficult and strenuous job--exhausting even for those who don't have fibro! I wonder how we do it. I just get myself there each day and try to forget my exhaustion and take extra pain meds if I am having a more painful day. It's not easy, but I do laugh with the kids. They catch my silly mistakes due to the fibro, and I crack a joke about it. I got an award last year and extra responsibilities since they thought I was good...guess I fooled them and pushed myself harder. But it was too hard and I can't anymore and am trying to knock things off my plate. Exercise really does energize me and even just a walk, bike ride, or swim helps. I think you just need to get yourself into those situations and then they will help. If not, stop and rest. I was raised with a very good work ethic and this is hard for me to slow down. But it's my only strategy right now along with more exercise, maybe trying yoga, and resting more and feeling okay with that. Just had a deep tissue massage 2 days ago and while I hurt the past 2 days, it did really help my neck, upper back, and horrigle 2 week migraine...there is a God! Not sure if I will need to go back to an office job, but with this economy and being a single parent with no real supports other than a few good friends, I have no choice but to keep plugging along. Take care and be well.

 

m.e. - September 7

Axxie, you are such a support to everyone on this site. We are all in the same boat just at different places in this unfortunate struggle. Just hang in there and take it day by day...I know that's easy to say, but it's all we can do. I am a big napper too and am learning not to feel guilty about it. Yesterday I could have slept all day (truly), but felt guilty and went biking with my son. It took all I had just to set up the bike rack and lift the bikes on the car... I dreaded it! But it ended up energizing me, and I am going out again today. Sometimes we have to trick ourselves and other times just accept that you really need to take it easy--it's a real balancing game. As for work, I am happy to hear when people have supports as I don't. Take good care of yourself. m.e.

 

gohan2801 - September 7

I currently am working and was diagnosed with fms not to long ago, but my job lets me sit for most of the day and is not to stressful but i know most do not have my kind of job and it is hard for me as it is getting through the day so i can imagine what it would be like for all of you. Sometimes i fall at sleep at work due to my meds and i know it does not look good to my workers seeing as im the store manager. Im not sure how much longer i can keep this up or how long my workers will go without ratting me out. My support goes out to all of you who have to deal with tough jobs with FMS. I hope everyone is having a great day.

 

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