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A MyFibroTeam Member asked a question 💭
Early, TX

My husband insists that I get a part time job at least until I know about my disability case. How many of you hold down a job with this "syndrome"?

August 7, 2015
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Answer Summary

Members opened up about the profound challenge of balancing work with fibromyalgia, with experiences ranging from working full-time through... Read more

Members opened up about the profound challenge of balancing work with fibromyalgia, with experiences ranging from working full-time through sheer determination to being unable to work at all and applying for disability benefits. Many members shared practical insights about the disability application process, emphasizing that it typically involves multiple denials and appeals often lasting years, the critical importance of having complete and accurate medical records including documented tender points, and the need to secure an attorney early in the process. A recurring theme was the deep emotional toll of losing the ability to work, with members expressing guilt over reduced hours, grief over careers they loved, and the painful tension between bodies that desperately need rest and financial realities that demand income.

A MyFibroTeam Member

Disability doesn't happen right away. I'm still waiting. I've had to appeal it so if you are going to apply for this you should be aware of some things.

First -you need to get a copy of your records and review them and request any items that were placed in your medical by error be marked as such. (Learned this the hard way)
Second -you need to make sure your doctors are on board with you and agree that this is your only option at this time. ( meaning that you are hoping to be cured someday to give a normal life again)
Third -you need to do your research.
Fourth -you need to get an attorney to help you. Don't wait.

More than 90% of social security cases are denied the first time. Then you start the appeals process. There are different levels. It's crazy and absurd but they make it that way because people throw in the towel and give up. I applied in 2012 and I'm still waiting for an answer from my last appeal. It will be a year from that one any day now.

As far as working, that is not possible for me. I would love too. I was the one who supported the family so it's been very difficult. Your husband is not in your body. If you can't work, then sit down together and try to redo the budget. Do you really need cable? You may want it but you do not need it. Do you need to eat out once a week. Do date nights in. Research ideas. But let me tell you one one thing, my family was homeless because of this for a short time. You learn quickly what the difference of wanting and needing is. Your husband needs to understand that you are not lazy but how your body feels. Again, research. Find some articles that you can go over together. One thing with this illness is communication. No one knows your body but you!

August 7, 2015
A MyFibroTeam Member

I read an article a couple of years ago that said fibro can stay consistent (for lack of a better word. I can't find the word I'm looking for) but once it progresses you may have good days. You may have many good days at once but you will never experience your symptoms at the low level you experience in the past. In other words you can progress but never regress. I hope that makes sense.

October 20, 2015
A MyFibroTeam Member

My office doesn't want part time employees, and they want me to work more. I am down to 3 days a week and can barely make it. I don't want to quit, I love the doc I work with and I love my job. The thought of starting over at another practice is exhausting. The guilt of not being able to work full time like I used to is tremendous. I feel terrible thinking that my hubs will have to work more if I am unemployed. Uggghhhhh

July 18, 2016
A MyFibroTeam Member

Well i havent worked since 2010 and recently was denied my appeal against the Judges decision so 4 almost 5 years down the drain... And from my understanding it had alot to do with the fact my all so smart dr didnt document my tender points aka pressure points or other criteria correctly or at all so 2 big big factors be sure that is in your records and that your records stay up to date.....

July 18, 2016
A MyFibroTeam Member

I'm in the process of waiting to go before a judge.

October 15, 2015

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