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How often did you see a doctor while trying to build a disability ssdi/ssi case?

Mar 05, 2016 3:06 AM

I have read 4 times a year or more is best, unfortunately my rheumatologist is only interested in seeing me once a year. A friend of mine suggested I see a doctor every week to build up my case, but I can't afford that, get transportation for it, or get a doctor other than a therapist to see me that often! Any suggestions?

Mar 05, 2016 6:08 AM

Do you see any other specialists? I've seen a neurologist, pain management team, psychologist specialized in pain, rheumatologist, physical therapist, plus several urgent care docs and my primary. I haven't actually gone through the process. Good luck!

Mar 05, 2016 12:30 PM

I am waiting for my hearing but isn't it about what is wrong not who you see? Isnt it about getting the care you need not "building" a case? I personally am just trying to find a way to live everyday not "build" a case.

Just to get the minimum care I need my routine... I have had 1 visit with 2 different pain specialists who both told me to learn to live with it and hold off pain killers as long as possible so no more visits with them. Then I seen oh some other specialist who told me right now my back is inoperable because surgery could kill me or leave me a paraplegic right now his orders are no BLT (bending, lifting, twisting) so I only had 1 appointment with him. I have weekly counseling where my mental condition is a 24 to 27 out of 27 a week (that is not good). Then my PCP as needed varies from a few times a month to none. My rhuemotolgist is hard to get into and that is 1 time every six months and I also communicate by email. Right now my allergist for chronic autoimmune hives is a few times a month but once insurance approves my shot it will be once a month. I go through rounds of blood tests every few month. I go through urgent care which probably averages once a month. I was in weekly physical therapy but not much they can do so I was gives exercises to do to help me to keep up at home because more appointments wouldn't bring anything new that would help.

And again all that just to try to find a way to live. I find the "build a case" reference offensive. In my opinion when one has chronic health conditions one shouldn't have to worry about "building" a case. A case comes from the fact you can not have a productive life.

Mar 06, 2016 3:03 PM

I'm honestly not talking about treatment, I am building a case. My doctors have told me there is nothing they can do for me basically and just ignore me

Mar 06, 2016 3:18 PM

Like honestly you don't seem to understand how disability works, you can be severely disabled, your doctors can agree, you can see the minimum amounts of appointments, but regardless of how disabling your conditions are you may still be unlikely to get approved for disability benefits because there just isn't enough evidence according to the case reviewers to get your benefits approved. This process is refered to by everyone going through it as building your case. It is a legal process, you are literally trying to go to court to prove you are sick enough to deserve benefits and be unable to work.

Good luck with getting your benefits while not playing their game, it might keep your conscious clear to your moral standard but it won't make winning benefits any easier.

Mar 06, 2016 5:52 PM

I refuse to make something up to win that is why disability is where it is at to many people building a case. To many doctors miss diagnosed patients because some people are great fakers. Others because doctors attach labels and patients feed into them and say they can't work. Don't worry I wont be responding to anything you write again I no longer have any belief of your medical condition as you seem to think this is all a game.

Mar 06, 2016 9:16 PM

Really shammagren, you think just because you don't like the terminology used by not just the person seeking help, but the professionals involved in making a case, the person must be faking and making things up? Wow, I want to say more, but I will not bring myself and others down to that level.

Mar 06, 2016 9:31 PM

Shyia, there really is no "set" number of visits or number of doctors you "need" I learned the hard way that if you have one doctor say that you can work, you can be denied. I can not sit, stand, walk, lift more than five pounds, or be around people, but at my review I was denied because my health "had improved" since I was accepted in 2002. Since then I have had a heart attack, dislocated my shoulder at least five times, dislocated my knee and my ankle, been diagnosed with stage three b kidney failure, Ehlers Danlos hypermobility type, and dislocated my wrist 20 times a day and am fighting to get my disability back. Thankfully I don't believe I am the norm though. Health care in my area is a joke.

Mar 07, 2016 11:21 AM

Yeah okay go on a disability forum and accuse people of faking you are a real nice person.
Never once in this whole discussion did I claim to make something up, I was talking about building up paper work for a legal case to get disability?

I have been ill for almost ten years, I have not applied to disability because everyone told me I was not sick, despit blood results, despite panic attacks, mental breakdowns, having to leave my job from severe hand joint pain to the point where I could barley wipe my own ass without crying. I got worse dramatically in September 2015 and now I have no choice but to turn to SSI. I have no income and have not had one for years because I am nearly bed bound. I have MDD, OCD, PTSD, GAD, IBS, FMS, UCTD, and possible endometriosis and me/cfs or another post viral syndrome. I have diagnosis from years of seeing different doctors, a pcp, a psychiatrist, a gastroenterologist, a rheumatologist, a gynecologist. My therapist who has been seeing me for over a year checks in on me because she is concerned about my physical health more than my mental. She let's be cancel appointments later than your typical 24 hour minimum because she knows my pain days are unexpected. I am trying to get a referal to see an infectious disease specialist and an allergist/immunologist. I have tried a list of medications, some have helped some, some have not. But the reality is with fm is that if the medications don't help you, the bullshit counseling doesn't help you, and the try yoga doesn't help you then you are absolutely not going to improve unless you are lucky enough to enter remission.

Do you think SSI is some glamourus thing? Do you have any clue how hard it is to get onto disability? Clearly you don't. You are completely out of it if you think people fake to get on SSI...

SSI is not like SSDI. It is minimum help for people who have no other options.

Here is what SSI is like:

Maximum 733$ a month. If you live with parents, friends, relatives, or government housing your benefits are cut. This is below the poverty line for yearly income even at the maximum amount of benefits, by about 3,000$. This is not enough to pay rent if you are on your own AND feed yourself AND pay medical expenses. It helps, but it isn't enough to possibly cover the expenses of today's world in the US.

You cannot get married or if you are married you must get divorced if you want full benefits. I am a lesbian and have been fighting my whole life to get marriages by people like me recognized by the governement so that we can share in the over 1,000 rights that heterosexual couples gain by getting married. Before same sex marriage was legal, and even now after, same sex couples are more likely to struggle financially because we didn't get breaks on our taxes, we didn't get spousal insurance coverage, we didn't get benefits when our spouses died. The only thing I have wanted my whole life is to be healthy and to get married. It doesn't sound like I will get either, thanks to my illnesses. If you are married your spouses income dramatically cuts your benefits... They think if your spouse makes money that you should be sugar mommy/daddyed instead of having a little dignity and contributing to your household.

You cannot work a job like you can on SSDI. There are no incentives to get back to work because if you make more than your benefits in even one month, you are blocked from receiving benefits for a year. The amount you work also reduces your benefits by 50% of what you made, a small help, but not ideal for escaping being below the poverty line.

You can only own 2,000$ worth of assets, or 3,000$ if you are married. Even with the maximum benefits a month and owning 2,000$ of assets, people on SSI are still below the poverty line.


Overall SSI is a godsend for many disabled people like myself for getting some kind of income to hopefully suvive without being homeless. But it is a system meant to trap you into life below the poverty line. It is not glamorous, it is not something people fake to get on. It is a solution for people who have been unable to work long enough to earn their work credits like myself.

I want to be healthy, I want to live a normal life, put my education to use, work at my dream job or hell even a job, I want more than anything to marry my partner in a few years and help provide for her, she has chronic illnesses too and lives in pain every day too but is less severe so is able to work with a few restrictions. I want to move out of my parents house, have a dog, be independant, further my education, be at the level in life where nearly everyone I graduated college with is. I want to make my professors proud that they trained me, I want to make beautiful art and make media in which lesbians can see themselves finally without the trope of lesbian characters dying to further an agenda. I want to draw comics in my spare time. One day I even want to adopt an older child or two since older children are harder to place with foster and adoptive families. I want to learn to drive so that if I need to run to the store or go to a doctors, I don't have to wait days or weeks. I feel like such a disapointment to my mom who spent most of her money putting me through my dream college in the hopes I would be well enough to work in my dream job and make an acceptable salary. I want to make her proud and I don't want her to worry about me like she does.

I want more than anything to have a life. Even some of these things would be enough. I am extremely lucky, I have a dedicated loving and disabled but full time working mother who understands I have limitations and is helping me see the doctors I need. I have a loving and disabled but working partner, who understands when I am in too much pain for her to even hug me. I have a concerned family who just want to see me feel better, who miss me because I can no longer attend family gatherings because of the risk of my cousins baby giving me another virus or because I just do not have the energy to travel 40 minutes there and 40 minutes back despite knowing I will be sitting on the sofa the whole time.

I would get better if I could, but I know that unless some miracle occurs I have been sick for years and severely sick for months. So yes I could continue to not contribute to my very generous household, who give me a place to live, and food, and clothes, and medications, and cover my doctors appointments and internet bills. But for my family, I know I have to start the process of building my legal disability case and building my paperwork while simultaniously seeking treatment and trying every medicine, every therapy, every supplement, every test that my doctor recomends or that I can buy OTC.

No one would willingly choose this isolation.

Mar 15, 2016 1:45 PM

PS it talks about EDS, but it should help with other diagnosis as well.

Mar 15, 2016 2:17 PM

Building your claim is more about collecting all the documents to verify your abilities. You need to gather the names and addresses and dates for every diagnostic test, screening, therapy and medication since your condition began. Usually with fm it began affecting you long before it was dx. After i submitted my application i had to complete a 15 year enployment history and a current abilities questionaire. I also had to list all medications i am on and the side affect that i suffer from. The most important advice i can give you is go to social security web site and begin your application. If you dont remember every appointment or doctor you have seen contact your insuance company for a summary of claims.

Mar 15, 2016 10:53 PM

I was seeing my pain management doctor once a month but I had already been to a rheumatologist and neurologist.

Mar 15, 2016 11:30 PM

I'm off work right now, but I'm an Employment and Assistance Worker (for income assistance and disability assistance). I work with clients once they've been approved. Many have told me that it's less about the doctor appointments and tests, and more about reading through the requirements for disability, and ensuring to use the words used in the legislation, requirements and guidelines.

My suggestion would be to gather up the information in the packet, print off a copy of the legislation and follow it to the letter. If it says you must show that your disability is permanent, and you have a diagnosis that is on their list of diagnosis they consider a permanent disability, put a copy of that list of diagnosis in with your paperwork with your diagnosis highlighted, and a letter from a dr stating you have been diagnosed. If they want a list of employment for the last five years, and you have a gap when you didn't work, put that gap time in there and explain why you were not employed.

In other words, use their own words to prove your case. Don't leave any gaps. Hit each and every point required in the legislation.

I don't know if that's helpful, but I keep hearing that they turn down a certain percentage of first time applications, I know the workers adjudicating the applications. Those applications are usually not complete and that's why they're turned down. Any application that meets the requirements will be approved. We go home at the end of the day happy to have helped those we can, but also crushed by the inability to help others because of the legislation and regulations...good people who we know are desperately in need. We get no pleasure in turning people down, and there is no mandate requiring us to deny a certain amount of applicants.

Mar 16, 2016 1:13 AM

Thanks dlwc58 that makes a lot of sense.

Mar 16, 2016 8:36 PM

Every month and be blunt forward and loud if you have too SSI SSD Is hard to get and takes up to 7 years to get myne took 5 years then they only paid back pay for 7 mnths. They will not pay back pay anymore for long times back . Lawyer is helpful but medical exam.s are important the more records you have the better they don't want to have any gaps in your times between Dr.s

Mar 28, 2016 10:05 PM

Thank you everyone for your input and advice, it is immensely helpful

Mar 29, 2016 5:33 AM

Shyia, Thank you for bringing up this topic.
I am considering disability just because I can not get to work on a regular basis anymore.
The pain and fatigue is just too much to fight day after day, year after year.
Getting worse.
The stress and worry about how to live while waiting is even worse.
I think I'm going to a lawyer and let them advise me on the process.
I think testing, mri's, cat scans, etc. that they put us thru is enough documentation.
This app is going to be very helpful for your case because you are documenting your pain and how it affects you daily.
That is important in a disability case, documentation!!!!!! The more the better.
Thaks

Mar 30, 2016 12:32 PM

Quite oddly, I saw no doctors for SSDI. They apparently used my VA medical records and found enough in there to grant me the disabiluty after several years. LOL, the VA only called my 50% disabled at tge time they first granted mine. I since had a C&P exam, and that doctor (or psych, I can't recall ) muttered that I would never work again with all the problems I have.
Of course, the VA promptly lost that info since it was right beore the government shutdown. I've recently filed for an increase due to my spine. Chipping away at that.

I think that they are looking at the doctor info from before you file as much as during, as well as the statements from family members about how hurt you are.

Mar 30, 2016 4:44 PM

Shyia, you should never had need to justify or explain yourself. I am sorry for that that you were hurt. I hope we don't lose you. This group is really a great group. I would hate to see you leave over a misunderstanding. As far going to the doctor, I think it is good to have a good relationship with your primary health provider. If you don't make regular visits to him, he may feel that you are fine. I understand it is the matter of cost. Do you live near a hospital medical center? Or a university hospital? Without having income, you could apply to get free medical care from one of them? If you want to give me you city and state, I will be happy to find you the closest one that has a program. But I would think with the problems you are having, you would need to see the doctors at least every two months. You probably do. I would have that kind of relationship with my primary care doctor. Going to a university hospital where you could get free care might get you the diagnosis you need. They would have state of the art equipment. They would run all the test you would need at no charge. All the specialist you would need to see. I would go there with a clean slate. Bring no baggage from the other doctors. Tell them about them but don't bring their test results with you.. I usually carry mine. Just a suggestion. Best wishes to you.

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