I've looked on the web to see what percentage of people with fibro work full-time, work part-time or don't work at all. I can't seem to find any data on this. I work full time, but sometimes I wonder if I'm alone in the fact that I feel like I just can't keep going full-time. I go to the VA but they haven't seen me in two years. I am going in Nov. But every time I ask them to write me something saying I can't work overtime they tell me there is no literature or data saying I can't work overtime or full-time and that I just need to work. So this is just for my own data collection. If you would please go to my blog and take my poll on the right hand side.
Hey KJ
I check out your blog it is very nice. I did not vote I have been of works for 4 months but it is due to lupus arthritis and fibro. I will check it in a couple of days I am interested to know the results.
I have both fibro & discoid lupus work full time and it’s a struggle
No, the VA will not work with me. I would have to get a different doctor. I am going in Nov to see if they will do blood work to check some things like vitamin levels or even hormone levels. Just to see if anything else could be going on. I also want to see someone about food intolerance. I have no clue if they will let me do any of that or just say no. They usually will check vitamin D and that is about all. They refuse to let my see a rhuematologist. Actually they asked the dr to see me and the dr (who has never seen me) left a message for the receptionist to call me to tell me that they don't need to see me and that I just need to go to work. That is what they told me. That was my government health care at the VA.
Thank you. I'm glad you liked my blog.
Done! I have been on disability since 1992.
TY Kimberly.
Hi I'm fairly new to sight. I haven't worked for 2yrs due to pain and fatigue. Applied for SS and denied but still fighting it. Have Fibro shortens arthritis and major depression. Good luck. Doctors are scarce in fibro world.
I worked up till almost 3 years ago, attempting SSDI at this time. My work was very stressful and they asked me to leave or be fired due to sick time and not being able to keep up with the duties. I did vote on your blog.
Since Fibro affects every person differently, people often go through different stages where they work full time or part time or not at all. A lot of the nursing aides that come help Mom have fibro and thought they were too sick to work, but then their husband got much sicker, so they had to go back to work while in pain. Lots of hospital nurses also have it, I used to feel bad that a person in pain was caring for me. I still do, but since I've become much sicker, I'm grateful for the help of someone who is more able than I am. Work as long as possible. I took on home jobs just to feel a sense of accomplishment and of being useful to helping our household. Eventually had no choice but to apply for disability. I got too sick to do the home jobs that took so many hours a day and I started making so many mistakes it was a liability.
Today I'm reading about small fiber neuropathy that some believe is one of the many causes of fibro. If you feel unable to earn $700 a month, your Dr. can fill out a form to start the disability process. most of us have to appeal a second time. That's how they weed out those just looking for an easy buck. But if you go through disability lawyers, .you could get approved the first time, and you only pay them a percentage of your first disability check.
TY Deb.
What a great blog KJ! Would you consider adding a link to this site? It will help others find the site which you probably know is one of the most frustrating things Fibro sufferers have to deal with - being alone and having no support.
Thanks for the consideration.
I read your blog and voted. I currently work full-time. I have a great understanding boss who does not mind if I am unable to get out of bed but still can work from home. Because he is so kind I try to bargain with myself daily to go to the office. I will tell myself just go for an hour. While I am there I will force the next hour or half hour… And so on. Sometimes I make it all day. Yesterday my boss’s boss’s boss came up to me and said " you feel bad don’t you" I said yes how did you know. She said I can see it in your face. So I guess I am having a harder time hiding it. When I was reading your blogs I felt like you knew my story, the similarities are scary. I am glad you wrote down how you feel and what you go through. Because like you I feel like I am the only one. That is why I joined this site. To let me know I am not alone and get the support that I need. I too have a great husband who when home tries to do everything he can for me, but his job causes him to travel a lot and out of country, so it is me and the children. They are now of age to understand and help. They are teenagers so they are not always the most supportive. So thanks for your comments.
Hi KJ. What a great blog. I have voted. I have been officially off of work since Oct 2007. I had great bosses who encouraged me to come in whenever I felt like I could work. That was nice for awhile, but the fibro and caring for my elderly parents took over all time and energy. I'm now on SSD. I was approved on my first try. I spent about a year before I applied taking notes and journaling how fm/cfs effected my every day life. My therapist also wrote a letter for me. Not to mention all the MD's chart notes and the specialists notes and diagnostics.
I'll be checking out your blog some more. It's very good!
Kitty
When I lived in Mississippi the Rhuem would not give me anything but muscle relaxers. Then they would tell me to see mental health. Mental health was a social worker who would say she couldn't write meds and the only thing she could get me was antidepressants like zoloft and she would have to get that signed off from a dr that had never seen me. It was a joke and a cycle. She would ask me what the day was, how I felt, how the med was working, write another script and out the door I went. That was all.
I moved to Indiana two years ago, but I live on the Kentucky boarder. The closest VA hospital is in KY. I get to see a NP or gen doctor once a year. At that appointment they will set me up for my yearly gyn. They will do the normal blood work. If there is anything else I have concerns with they may or may not put in a consult. If they do, the doctor who gets the consult will either say yes they will see me or no they will not. I will not get notified if they say no. They just don't see me. I have to call to see if there are any notes in the system. If so they can read the notes to me. So when I called to see a Rheum the notes said they didn't need to see me. I said I need to see someone because work is forcing me to work overtime unless I get a note from my doctor saying I can't work overtime. They said they would put in any other note. I called them back about the letter for work. When I called next I was told over the phone that the dr said he doesn't need to see me, there is nothing in literature saying people with fibro can't work and that I just need to go to work. That is what the note in the computer said. It was read by a receptionist. Mind you, I have NEVER been to this doctor. This doctor has never seen me and refuses to see me. He says I can go to the general doctor on my yearly visit and get care from them. That is VA health care.
I had a coworker who gave me her doctor's name. I went to see him back in March. Took him some documentation of my fibro. I asked for a note to not work overtime. He said that sounded reasonable and that I needed to rest. 40 hours was enough and wrote my letter. I could go back to him, but I will have to pay for everything through him instead of the VA. In which I was medically discharged from the Air Force for my fibro. They should be taking care of me instead of treating me like I am a mental case or a piece of trash that is not worthy of being seen by a doctor.
I don't have a dr that would even begin to fill anything out. The VA does not believe in fibro. The dr that diagnosed me was the best one I have ever been to. He was in FL. When I moved to Mississippi I had to go to the VA. They took me off of everything that my other doc had me on and refused to give me the same meds. I was doing good on what he had me on, but they refused to write the scripts. I went downhill. It got to the point where I had to go off work. Before I got to that point I looked for a dr. outside the VA. She put me on Sevella. That was a NIGHTMARE for me. It was BAD. I went back to her and told her I was having suicidal and violent thoughts on it and she broke out in laughter and said the medicine did not do that to me. She was on the study for that med and it did not cause any of those side effects. I walked out of her office and never went back. I have had NO luck with doctors. I live in Indiana now. I went to one doc outside of the VA in Louisville KY. He was nice and wrote me a letter saying I couldn't work overtime. I was actually surprised he did that. He was the first doc in 10 years to be nice to me about my condition.
I was off work in MS, but I went back to work, same job. I transferred to KY, same job, different office. I am starting to get sick again. I don't want to lose my job or even quit working. I wouldn't mind going part-time. I am not at the point where I have to say I just CAN'T. I have been there, know what it is like. I am a bit away from that right now. I haven't even looked into FMLA yet as I get good benefits. I get 4 hours of sick leave every 2 weeks and 6 hours of leave. So I get one day of leave for every two weeks I work. Right now I still have hours on the book to use. My first step will be FMLA.
Thank you, Scott! I would love to leave a link. Where would I do that?
Thank you. I'm glad my story helped someone. It does feel like you are alone in this maze and fog called fibro. The internet has showed me that others are out there and we are starting to speak up. Maybe one day the medical community will take us seriously and spend more time finding a reason for this if not a cure.
Thanks Kitty.
I've not worked for 2yrs now, I gave up initially due a severe anxiety disorder but then fibro hit me! I've voted on your poll.
But, now that my anxiety is under control, I'm in pain all the time and fatigued and fogged by mid-day with the fibro so I've stayed off work and will remain as a housewife now.
Love Lucy xx