Working with Fibro

I visited the Rheumatologist on Tuesday last week. She asked me then if I was wanting to apply for disability because I had several tender points. I said no, but I've been in a flare for a little over 2 weeks now and am thinking disability may not be a bad idea. I've also got asthma and a slight case of scoliosis. However, I'm only 28 and hate to think that I'm unable to work. I came to work this morning and am nearly in tears because of hurting so will probably go home before noon (I've cut my days back to 4-6 hours and leave at noon most days because I've gotten to where I have to have a nap in the afternoons because I'm so exhausted by then). I don't want people to see me as "living off their tax dollars" so am skeptical of filing for disability, but I've not got gainful employment right now because of hurting or being too tired to function. I resigned from teaching in 2008 when I was really sick (my doctors think it may have been the onset of my fibro...around the time my older brother died in an accident) and am a secretary at a church now. Work is easy and I love it, but it's hard to get through the day sometimes.

How many of you are working?

For those of you not working, are you on disability and how hard was it to get? What helped make your decision to file for disability?

I work, but I understand where you’re coming from. There are many days when disability looks really good. But then I them about how much money I’d actually get from SSI, how long it takes to get approved, how long I’d have to be out of work first, and that’s enough to get me in to work in the morning.

Talk to your doctor about treatment, because there are meds that can reduce symptoms to a tolerable level. Most days, I can get through it, and feel okay. I don’t expect that I’ll ever be pain-free, but as long as the symptoms are tolerable, I’ll be okay. I haven’t yet tried every med available to me, and until then there is hope for better.

HI Smalltowngirl, I can relate to what you are saying. I also work full time with a fairly demanding job. I do love my job most of the time which helps keep me motivated. Also, for me, even when hurting, I find the more things I can do to distract myself (work) the better I feel. I do sometimes take days off just to recover but I usually find for me that the pain almost "feels" worse when I am not focused on the tasks at hand. It is a balancing act for sure. Also, I know that generally the more tired I am the worse I am going to feel so I try to get those rests in when possible, just short 15-20 minutes where I sit and do nothing. I know there are others on here on disability and they can perhaps offer their perspective on the filing process, that is something I haven't experience with. And Grumpycat made a good point about talking to your doctor about treatment. I started physical therapy this year and it surprisingly has helped so I am keeping up with it. For years, I was skeptical that it would help but I am really glad I talked to my doctor and am now trying to be a better listener to the advice they give. Hugs!!

Im 26 and im on disability.disability. Im not going to work again and im not ashamed to say it.It was very hard to get my disability and they review it every 4 years i was cut off my a desk review who didnt even have the courtesy of meeting me.I got it reinstated after an appeal.

Hi Smalltowngirl,

I am currently on disability but for me, taking care of my son (strong willed child) has been a part time job with optional full time hours. I can say this because my full time job in the past was in childcare. Before going on disability my full time job -toddler teacher (4 kids) was truly easier than my one toddler. Anyways, back to question of disability. I tried to change my work schedule to adapt to my fibro. I was able to work 4 days/12 hours and 3 days off. I was even able to choose extra hours if I wanted. That worked for 5 years. I was not able to do 5 day/ 9-5pm work schedule. I lost 3 jobs trying it.

I am not sure what state you are in but it may be nationwide (run by federal government). I think it is called the ticket to work. You have the option to work part time and still receive benefits. There is a limit on how much you can earm and how much time you can work. I think that is a good option if you do not want to leave the work force

Hello,

Have you thought about completing FMLA ppwk? This was suggested to me by another member on here. You have to be at your employer for atleast 1 year and it will allow you to take up to 12 weeks unpaid leave per year. I'm thinking about applying because if I miss a day every few weeks and I run out of leave, I want my job to be protected. I'm 26 and can relate to what you are going through. I also have a dx of Arthritis that primarily affects my spine and lower back. Adjusting your work schedule, as you've done, can be helpful as well. I often sit at the end of my bed in the mornings and cry because I'm so exhausted, but I manage to get the strength to go into work. I agree with GrumpyCat that the distractions at work and being busy do help a lot of the time. For me, I think I would focus on my diagnosis too much and it would take over my life if I applied for disability. That's just me though. If you want to look into applying for disability and think it might benefit you, more power to you! : )

Sending good thoughts your way,

Sara