Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Feb 29, 2016 4:56 PM

Hey everyone if you read my earlier post you will know that I am floored to find out fibromyalgia is not considered a disability. This needs to change, now I know a lot of us have other chronic illnesses too. But for the people who just have fibromyalgia they so need our help. That's pain all over all the time and affects people working a job. I am not a political person at all but I'm ready to get political bout this. And Sjögren's syndrome is the second most autoimmune disease but yet nurses in a hospital haven't heard of it. I would love everyone thoughts. Cause I know what it is like to suffer from pain everyday. I get absolutely no pain medication and some days I feel like God take me! So something has got to change somewhere.

Feb 29, 2016 5:24 PM

I agree. Had to leave my job after 15years. Only been majorly I'll for 3of them. Thought a disability was also covered by long term illnesses. That's what they said on government website. But yeah I agree it should be a disability in its own right

Feb 29, 2016 5:25 PM

Who told you it wasn't a disability? Every time I hear about fibro, the words disability and disabled person come along with it. If you're being told that by a doctor or employer, I would suggest getting out of there ASAP!

Feb 29, 2016 5:26 PM

It's Interesting you lost this. I just today sent in a request to the Steve Harvey show suggesting that he do a full show on fibromyalgia. I ,like you feel that nkt enough people are aware of fibromayalgia. I saw it on Dr Oz a few months ago they spent a while 15 mins on it then. I was like what!!!! Is that all your gonna say?!! Yes fibromyalgia is an invisible illness but it needs to put in light. I agree with u wholeheartedly. If u want to send in a request along with me the the link is steveharveytv. Com

Feb 29, 2016 6:02 PM

Squints, fibromyalgia is not a disability in its own right under the Social Security Administration. I'm not talking about nurses or doctors. If you go to the Social Security website and lookup fibromyalgia you will see under them it's not considered a disability. For example, Sjögren's syndrome was not considered a disability. People who have it had to file for disability under the criteria for lupus. And now they have made Sjögren's syndrome a disability and it has its own criteria under Social Security.
I'm not saying fibromyalgia isn't a disability. What I'm sayin is if the only health is you have is Fibromyalgia and you can't work anymore and need disability the government has yet made it a disability. Now you can file and there are some guidelines for judges to follow and you have to file using other illnesses criteria just like Sjögren's people us to have to do. I'm sorry my disability hearing is tomorrow and I'm all over the place mentally. I hope what I'm trying to say is sounding ok. Just in case if you google fibromyalgia/disability all the info will come up.

Feb 29, 2016 6:13 PM

I sure will newfibrogirl

Feb 29, 2016 6:15 PM

Great if we all can come together on this like we do here who knows what we can do. And I'm wishing all blessings to come to you tomorrow..

Feb 29, 2016 6:38 PM

Umm I am a nurse and and i had not heard of Sjogrens syndrome until I came here...please give the medical community a break please...I am sorry that Fibromyalgia is not considered a disability... That needs to change. Not every nurse, every doctor, every therapist has had up to date education on every new disease process, pathophysiology, treatment, side effects, and all possible outcomes . I worked in almost every area in the hospital and it is impossible to say I knew how to treat every disease process. It takes personal initiative and motivation to constantly expand our awareness and education, people are very irritated with us if we don't appropriately respond to all the different needs. It is very hard on you... And it is very very difficult to the medical professionals as well.. As much as I want to defend the patient, I have recently have sensed the need to defend fellow healthcare professionals as well. I hope we can find a way to get what we need.. Looks like another battle with the government. Stepping down now. Blessings, Terri

Feb 29, 2016 6:45 PM

Oh no Terri I wasn't trying to come down on the healthcare workers cause it's not their fault. My mom is a retired nurse and she says to me all the time. "We are not miracle workers". Medical professionals are the busiest people and they can't keep up with all the new bad germs, illnesses, and diseases that have come out. But maybe a workshop on some of it if possible during one of their meetings or something. My mom was not familiar on Sjögren's either and the medicine plaquenil to treat it. But yes once again I lovely government, especially here in my state.

Feb 29, 2016 6:47 PM

But I was born and raised in Philadelphia Pa

Mar 01, 2016 12:21 AM

YES. I'll write to Steveharvytv.com, gladly! Fibromyalgia IS a disability. We know this and need to be heard.

As a group, we are a force for good. For example, each of us might decide to join an effort to recruit our understanding family & friends to lobby medical, local and regional decision makers to support necessary changes. *Just by sending brief, to the point emails.

On a larger scale, I know that an individual in each region could easily recruit folks willing to sign a prewritten, boilerplate letter or petition.

Collectively there is enough talent here to accomplish a change we feel is important. Look how many states (countries and regions) we represent!

I'm not standing on any particular soapbox - just saying that we do have power.
- And -
If nothing else, supporting something we believe in, even through a simple signature, would strengthen us psychologically.

I'm looking up congressionals and state officials in UT, now.

I might be willing to do some research on other areas and avenues, if desired. But I don't want to overstep, hurt feelings or take over.
And if there is a more appropriate forum for this I can go there.

Smiles and a Sense of Wonder to everyone here :-).

Mar 01, 2016 12:29 AM

I'm in Uk, went for my disability assessment months ago and still not heard back. My neighbour has two cancers, which also isn't a disability, but comes under disability payment because it's a long standing illness. I'll let you know what my result is... If I ever hear from them...

Mar 01, 2016 9:32 AM

I'm from England I get DLA for fibromyalgia and other mental health problems. I had to fight it to get but I got it. The new pip payments are better they go by how it effects your every day life. So keep with it and fight to get it. It takes up to 4 months to get an answer. You get it back dated to the day you applied for it.

Mar 01, 2016 10:28 AM

Good to know. Got a battle on my hands then

Mar 01, 2016 11:01 AM

I am also in the UK, had my assessment Christmas eve, got a letter saying I can work. All because I can walk and lift an empty cardboard box. Phoned them to disagree with this, ended up speaking to the mandatory deptment that was a month ago and still not heard anything. I only started claiming ESA middle of last year even though I have not worked in 10+ years. I have constant facial pain yet they focus on my walking. Some days I can walk up the road others days my hips, knees and ankles hurt to much. This is all thanks to that overpaid windbag Iain Duncan smith.

Mar 01, 2016 11:17 AM

It is a fight. A dr once told me think of your worse day and go on that, if you say that you can do things on some days they just listen to that. ESA is a pain I had to appeal that as well. It's not easy but get your DR's backing and everyone else, even close friends and family. Ask them to write letters how it effects your every day life and your mental health. It's not easy, I felt like it was in my head that they didn't believe me. Get the letters gobto citizen advice place. But you have only got a small window to appeal, it can take up to 16 weeks to get an answer, but you get it back dated. Please remember it's a fight.

Mar 01, 2016 12:53 PM

Intersting. I went to a C&P exam with a civilian for my VA disability, and when he heard how my days went with fibromyalgia, he muttered, "No way you're able to return to work." And that was without the PTSD and degenerative disc disease.
A problem I have is that whenever I see a doctor for a new and different pain, they first assume it's related to fibro. Even when xrays and mris show physical damage!
But the VA does recognize fibro as a "real" problem.

Mar 02, 2016 12:15 AM

In nh Fibro is not considered a disibilty until after 50 or something like that!! I got on it with the anxiety and stuff that comes with fibro...

Mar 02, 2016 3:02 AM

My attorney told me the reason my disability was denied is once they see fibromyalgia they deny it. He said I have enough other stuff I should get it I hope so.

Mar 02, 2016 12:18 PM

I of course was outright denied in my first go round with both VA and SSDI. I appealed and got SSDI based on my VA records, lol. Then the VA got through to my file and approved me at "60%" disabled. Currently refiled for my spine problems, mifht get a boost.
SSDI took 3 years and VA took about 5. But I got it.

Mar 02, 2016 12:35 PM

Last time I checked it was on the list. That was in October 2015. Maybe criteria is different, but I went on their website and pulled up a list of medical issues considered disabilities and it was there. I was looking because I have fibromyalgia.

Jan 04, 2018 9:17 AM

I got denied in less than a month so I know they are rubber stamping it. My lawyer feels confident. Don't appeal by yourself. Get a lawyer. They general don't charge until you win.

Jan 18, 2018 11:54 PM

After i lost my job which was the only job o could find that i could physically do i looked into disablility and if i could qualify and i what i thought was absolutely crazy was in my state people can get disability for the stress of being unemployed, but cant get it for fibromyaglia. I was so shocked that you have a hire chance at getting disablilty for stress (not anxiety disorders, just stress) of not having a job than a chronic pain disorder.

Jan 18, 2018 11:55 PM

Also, hi fibropowergirl. Welcome to our community ask anything and vent freely. We are here for each other.

Jan 24, 2018 4:35 PM

Hi Everyone I'm from Atlanta Georgia I got approved for fibromyalgia, L-4-5 fuse, left knee surgery

Ready to start relieving your pain?

Join Community