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pbbirdfibro

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Nov 14, 2017
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Reason
DX FIBRO
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00/0000
Country
US
State
VA
Hi- I have fibromyalgia (rheum dx 2011 and multiple Dr.'s), DDD in neck and low back, bilateral carpal tunnel, arthritis in hips, knees, hypothyroid, anxiety disorder. there are so many things with FM im not going to list them all.

I filed for SSDI in 2014 and got a hearing in May 2017. Six months later and I received the decision of unfavorable.

The ALJ apparently cherry-picked my file to make her point and said that she gave little weight to my treating physician who is a specialist in pain management and FM!!!!! I have been seeing this dr for almost 4 years now. ALJ did not even use the RFC dr filled out. He is a very respected physician too!

My file was full of copious notes, tests, mri's etc. Here's the thing about medical notes- be sure to tell your DR to fill in the defaults on the computer program they use for notes because if they dont change the default it will be treated as gospel by SS. this happened to me with my PCP dr who I only see for lipitor and thyroid meds. He is not my treating dr for my chronic pain.

Many Dr.s hate using computers programs for notes and just fill in a comments area with a reason.

I just don't understand how SS can manipulate and dismiss vital medical evidence.

There were so many errors in the decision it's ridiculous. Lawyer filed appeal yesterday.

And now I wait again!

Has anyone written their representatives?
 
I know nothing about the disability system in the US, but am I correct to understand that it took them 3 years to get to your case? Then 6 months to review it?

Wow...how do they expect people to stay alive in the meantime? I mean one has to eat, have a roof over their head, have the basics in life....

I really don't know what I'd do if my sister didn't take me in. In the country I live in disability is almost impossible to get even for severe mental illness (forget about fibro - it is not even properly acknowledged by the state, though most doctors are happy to diagnose everyone with the tiniest of pain with it. The big pharma has huge power in the doctor offices. Complicated, sad, cultural thing) If you are a woman, the state expects that you to either marry someone (of course, how can a female be unmarried with no kids?) or move back in with family members. Which I had to do....

I hope you have a really good lawyer who will follow up on all the errors made. Don't you also have to give some sort of a personal testimony? explain how your illnesses impact your basic daily living? I believe in many countries that final talk/testimony has a huge impact on the final decision.

Wishing you strength and all the best. Try to put your focus away from it as much as possible, listen to good music, eat good wholesome food, enjoy cups of coffee/tea (and a cookie :))
 
One of the reason that I gave up fighting for disability for now are those situations , and knowing that I can't handle the stress loads of it at the moment not to mention financial situations that I would need more to pursuing it again.

Not thing comes easy. I thought about it so many times , but the only conclusion I can come up with is to put a pause on my finances and debts then go back to the battle later when I'm good and ready with all the proper papers in waited with at least 2 representative and more than one good lawyers to deal with the both sides doctors/ the rules it self. Simply because having invisible illness is not easy to show any physical proof in court without getting a run around over and over by the both side . The least chaotic processing , no runing around , and effortless solid proof the better chance I'll have.

It's kinda funny cause to get the disability after that lost everything meaning that I need to gain everything back first before I can persuing the disability it self. So by the time I'm good and ready I might not even need one, but I still might need it for the future retirement. So who knows.
 
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Thank you so much for replying.
To answer a question- It took a little over 3 years to get a hearing and yes I did testify but I am so not good in those high-stress situations and being able to remember everything correctly without having a reference is hard, I was told not to bring anything but myself to the hearing.
I was in excruciating pain and don't really remember the questioning at the end too.

My lawyer was ready to toss all the paperwork in my file because he was so convinced that I was getting disability and wouldn't need it anymore.
I had everything they needed!!

You must make sure that you have written explanations from DR on any discrepancies in their notes. I was stupid enough to think that SS would know the difference between program defaults on Dr notes. like "normal gait" but I never assume huh, just crazy

I would not have been able to do this without my husband and his job. Even though he is working the money is in tight control. He is working OT whenever he can and It just kills me that he has to work so hard. We had to get help from his parents to refinance our little condo so that we weren't homeless. I really want to pay them back too but who knows when.

Also my lawyer told me that the ALJ doesn't like to give disability to anyone under 50. im 2 months from 49. he said that my ALJ was also notorious for making up her mind before hearing, even with evidence as strong as mine.

I feel like I was discriminated against on my FM. the ALJ (judge) called it "alleged" and ignored all the DR who Dx and treatment for FM.

I just want to scream:twisted:
 
Scream away pbbirdfibro, I know exactly how you feel.

Take many deep breaths , it's best to breath up your nose hold it a few seconds and let off with the mouth. It's what I have to do all the time while dealing with stress and anxiety . I'm 38 so yeah it's not gonna be an easy fight . I lost a lot along the way and I'm homeless at the moment, but I'll live. Any lawyers would convince me otherwise , but it's not like they're the one that losing money while fighting my battle.

I'm worry about my bf having to take care of me everyday , and wish I could get back to earning something to help out even just a little ( I tried everything) . I hate the feeling of being the burdens. But I know my limits and I need to give him my emotional support too not just my own. I get attacks from my conditions mentally/physically everyday so going in for hearing is impossible for me. The last time I could hardly made it through the door.

So please be kind to your mind while you're fighting for it, and do what nescessary for you first. Today might not be the day then tomorrow might. XOXO pbbirdfibro stay strong.

There's no losing in keeping on trying. Same goes for fibro too. Sometime I think they're the same. :smile:
 
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I have heard the horror stories of people with Fibro obtaining Disability including some close friends of mine. I was hesitant to apply thinking I too would need to fight ......and let's face it we all fight everyday just to do 1/8th of the things we used to do. Recently in Canada the courts made a decision that Fibro is a disability. It was close to that time when I sent in my paperwork and as it happens I was approved and back payed to Jan 2016. The future is changing and awareness of our situation if becoming more prevalent in society. When people mention Fibromyalgia these days, everyone knows someone that has it in some degree. These are our friends and our family who have known us forever and know how we were before Fibro. Even though they cannot feel our struggles they know our suffering. These are the people who will champion us and eventually, Courts, Governments and greedy Insurance Companies will have no way to ignore what's right. My next step in Canada is to apply for a disability tax credit. I believe that change is coming so keep fighting just choose to fight when you have the strength and cognitive abilities to fight. Not sure about other countries but many of the top hospitals here have patient portals where you can review doctors notes and tests online. As soon as mine are released I go over them as soon as I am able and contact the Doctors to discuss discrepancies. If something is abnormal in my tests, I make an appointment with my GP to understand what it means and if we should be doing other tests. Just remember that it's the "practice of medicine" and you must advocate for yourself. If you don't have a GP who is willing to take the time to explain things that are known then get another one.
 
Hi,

So sorry you have to deal with having your life put into someone else’s hands as if they could possibly live a day in your shoes!

I myself went through the process and was denied 4 times! I had multiple specialists including a psychiatrist and rheumatologist. Forms were filed stating I couldn’t sit or stand more than a half hour and it also stated I could expect to have to take off at least 5 times per month minimum..a vocational expert testified stating there was no way I would be able to work.
I was denied after that hearing based on my education and the fact that I was able to walk my child down the sidewalk to the bus. (Single Mom) who else was gonna do it.

I say this to state that I went through depression the first two times then after the last time I said to myself I’ll get a job and work until I literally fallout on the job! Maybe they’ll believe me then! I did secure a job and sure enough I withheld my medical information until earlier this year bc I had to take off more than 8 days per month and now on FMLA and short term disability.

Sorry so long but I really wish you all the best and will pray for success with your case! Stay strong and think positive!��������
 
:idea: I want to move to Canada

Canada is far more progressive than the US! We are still stuck with antiquated thinking and systems down here Sam66. I am so happy that you got approved.

The Social Security system here is overworked due to instant denials and not enough qualified reviewers. Its a backlog of paperwork- they still require that all info is FAXED to them, faxed in 2017, arrgh! I just don't see how it comes down to 1 person's decision, the judge. Why not a trial by 3 with instant decisions?

I cant describe what I am feeling lately- its like everything, oh and my FM is off the charts.

What can be done to make a change to FM and Invisible disabilities awareness? To demand fair treatment, and make policy changes?

In this day and age, there's got to be something?! "Fibromyalgia Goes Viral" :lol:
 
Oh god.. don't get me started on the FAX!!! :confused: I use efax but between them back and forward it made no sense grrr . The systems are so old and falling apart. The type of case with easy chance of getting the disability claim around here aren't even making any sense. Most people can get a claim right away from just TMJ alone from a minor company's car accident , but with FM is out of the question? Cause not like I can legally blamed anyone for FM . If only I could.
 
pbbird, I understand your intense frustration!
Yes, Canada is far more advanced in medical care that the USA. And don't believe anyone who says that it is not - they have just been brainwashed by people in this country who make things up to make it sound worse to have national health care plans than the totally #$%&* system that we have here.

Unfortunately, moving to Canada, unless you have dual citizenship, is not an easy thing to do. They have very strict immigration laws.

The only thing you can do is appeal, and you are doing that.
I also would advise you to do a lot of research. Go online and type in "how to get approved for SSDI" and variations on that theme. I bet you will find a thousand entries that will give advice and you can read a bunch of them and pick out the ones that you can do with your situation.

Information is always, always the place to start and is often a cure for the frustration and despair.

Also, I think that they make you wait not out of meanness or because they are backed up that long, but because there is a rule that you must be totally out of work, unable to do anything to support yourself, for at least 2 years in order to get disability. How they expect people to survive in the meantime is another issue. I have known people who became homeless, lived in shelters, lived in their cars, etc. while waiting for disability, eating from the food bank and so on. It's a harsh system and needs to be improved.

However...I don't think it would be quite this bad if so many people had not taken unfair advantage of it back when it was a lot easier to get approved. Now the people who really need it have to suffer.

I wish you the best of luck!
 
Can those who did finally get disability maybe give some tips on how they finally achieved it?

I am asking because my only hope in life is to get disability, and improve my life from there on. Once I get disability in my other country (am dual citizen), the state is not only responsible of giving you the money (the bare minimal which I am completely fine with, I only need a warm room with a 1 person bed, basic veggie food, a shower every day, and I am content.), but more importantly for me, they are also responsible for making sure you become an active member of society, as much as possible. They don't expect you to work of course, but they want you to get out of the house for therapy, for meetings with people who suffer from the same, maybe volunteer here and there. And they will facilitate a lot of it, with shuttle busses to take you to places, a social worker who guides you through the possibilities and the paperwork....so it is so much more than just financial help.

And I need help in becoming a human again. Getting over my trauma's, gaining trust back in humanity, have some self-esteem & self love, and some hope in the future......I feel utterly hopeless right now.
 
It is such a shame that so many of us have been denied disability even after all the effort and paperwork requirements were met.My experience was similar,in Quebec(Canada pays each province for health care,they in turn run it)the board consists of 5 doctors and if only one dissents,you are toast.

At the time 15 years ago,I was dealing with work related damage to the cubital nerve in my right elbow.Everyone ran for the door after working there for 13 years,except the labor board!

They stood by my claim for the injury,but would have nothing to do with my fibro diagnosis.I won my claim,but was then screwed by them,giving me glorified welfare even though I was insured for 60 k.

I was forced into hiring a lawyer and spending my last 15k on him.It took 6 yrs and the last few nerves I had left,but I won and ended up with a little less than half my salary till I am 60.

In the end I persevered,but it was hell and a gamble!If I had lost,I would have been broke and broken,I am so thankful for it,after reading about others' experiences.

I wish I could show you the road to approval,but even in Canada the wheels of government turn slowly,and even if you are well represented,there are no guarantees,unfortunately.
 
vicky that's exactly what people on disability need ....the whole package of support to keep them part of society while recognising they are not well enough to commit to working.

It would reduce mental health issues spiralling further and stave off isolation and loneliness.
 
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