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Old 04-04-2013, 01:07 PM #1
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Default New... worried and so confused.

I've been having trouble for a few years. Mostly with pain and fatigue but it took awhile (and a lot of doctors) to finally figure out that I have Thoracic Outlet Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome as well as a few other more minor diagnoses- scoliosis, depression, anxiety, TMJD, and IBS.
So I've been hopping from one specialist to the next, rounds of PT, surgery... and over the past few months it's gotten so bad that I can't return to work. I can't even stay awake all day or take care of my daughter without assistance throughout the day.
I was finally kicked in the pants and told that I need to just apply and stop waiting to get all the information and just start the process. So I did. And now I'm second guessing myself. There's no way I'm going to be granted SSDI without doctors backing me up (they change the subject when I bring it up), without a history of being with one doctor to treat my issues for awhile, and taking my age into consideration.
Of course, my life situation hasn't helped either. I was struggling to work full-time at the end of 2011 when my daughter was born prematurely and I had to move in with family. By the time I was ready to go back to work I could only work per diem (about 12 hours a week) then I had surgery for the Thoracic Outlet Syndrome and now that I'm past the post-op period I'm not finding that I have the ability to go back to work at all. Things have just really progressed.
I'm not on medication. I'm breastfeeding and have a doctor who says that "I have everything I need inside of me to heal myself."
I'm just so frustrated. The doctor I had who would have helped me the most moved to another practice that my insurance doesn't cover. So now I don't even have a PCP. None of my specialists have seen me more than a handful of times and don't know me well enough to judge whether I'm lazy or truly need help.
Now I'm anxious because I'm wondering if I've screwed myself by applying and not waiting until I got to know my doctors better and had a team on board to support the process.
Any advice?
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Old 04-04-2013, 03:03 PM #2
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Having been through the process my opinion is it's faster to wait and submit a thorough application.

You need to apply for other benefits like Medicaid and food stamps if you qualify, because it's likely you'll be denied. Starting a new application later on, might be faster than dealing with appeals, but you should be getting documentation now, regardless. Check out Voc Rehab. They'll test you and send you to their docs. If you're still healing, permanent disability might not be appropriate or necessary.

Those advising you likely make assumptions about the SSDI process.
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Old 04-04-2013, 08:16 PM #3
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Quote:
Originally Posted by LIT LOVE View Post
Having been through the process my opinion is it's faster to wait and submit a thorough application.

You need to apply for other benefits like Medicaid and food stamps if you qualify, because it's likely you'll be denied. Starting a new application later on, might be faster than dealing with appeals, but you should be getting documentation now, regardless. Check out Voc Rehab. They'll test you and send you to their docs. If you're still healing, permanent disability might not be appropriate or necessary.

Those advising you likely make assumptions about the SSDI process.
I already have Medicaid and food stamps. Can you tell me more about Voc Rehab? Is that unrelated to SSDI and something I should get a referral from my doctor for?
I've been unable to work since before surgery. My main problem is the fatigue and lack of stamina. I take multiple naps during the day and can't concentrate for crap. The pain is secondary though intense. Fatigue is unrelated to the TOS and has been increasing over the past few years. It had been over a year of not working/working less than 12 hours a week per diem before having surgery which my surgeon has stated I've healed from.

It is likely that those advising me about the SSDI process are unknowledgeable. I'm mostly being told that I need to do this sooner rather than later rather than continue to wait. I'm hoping that this doesn't mess with anything in the long term. I filled out the application to the best of my ability at this time. I think the functioning report will make thing much more clear.
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Old 04-06-2013, 02:09 AM #4
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Hi LLT,

A "problem" that I see Social Security having with your case/application is that you are not on any meds. If your biggest complaint is fatigue and then pain, it would be odd for your medical team to find those issues severe enough to cause permanent disability and yet not be severe enough to warrant treatment with medications that could help those symptoms.

That could be consistent with your thoughts about waiting until you were sure about what your doctors were thinking before starting this process. Perhaps they will have more to offer to you for those symptoms when you are done nursing your child. With all of the stressors going on within your body, the added stresses of nursing and caring for a young child may be causing a worsening of symptoms that could show some improvement as your child grows and isn't as physically demanding of you. It may be too soon to tell how you will be able to function in the future, especially after recent TOS surgery.

Those who pushed for you to apply for benefits sooner rather than later may have been concerned for you that the more time that passes since you were able to work FT, the less your eventual benefits would be.

Have you been checking out the TOS and fibro forums here too ? I'm a "lucky" member of both of those "clubs" too, but just don't have the time/energy to keep up with all the forums here that "fit"
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Old 04-06-2013, 02:26 AM #5
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Voc Rehab is a program that helps those that are disabled train or adapt so that they can work. That might mean completing a 4 year degree, or finding you a job where you can work from home taking incoming calls. They'll send you to their docs for testing and an evaluation.

This is not a SS program, but documentation gathered during VR, can be submitted to SS. It is a federally funded program, but is state run.


http://www.ct.gov/dss/cwp/view.asp?a=2353&q=305224 CT link!

Best of luck.
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Old 04-06-2013, 01:09 PM #6
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Quote:
Originally Posted by LiveLoveandTrust View Post
I've been having trouble for a few years. Mostly with pain and fatigue but it took awhile (and a lot of doctors) to finally figure out that I have Thoracic Outlet Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome as well as a few other more minor diagnoses- scoliosis, depression, anxiety, TMJD, and IBS.
So I've been hopping from one specialist to the next, rounds of PT, surgery... and over the past few months it's gotten so bad that I can't return to work. I can't even stay awake all day or take care of my daughter without assistance throughout the day.
I was finally kicked in the pants and told that I need to just apply and stop waiting to get all the information and just start the process. So I did. And now I'm second guessing myself. There's no way I'm going to be granted SSDI without doctors backing me up (they change the subject when I bring it up), without a history of being with one doctor to treat my issues for awhile, and taking my age into consideration.
Of course, my life situation hasn't helped either. I was struggling to work full-time at the end of 2011 when my daughter was born prematurely and I had to move in with family. By the time I was ready to go back to work I could only work per diem (about 12 hours a week) then I had surgery for the Thoracic Outlet Syndrome and now that I'm past the post-op period I'm not finding that I have the ability to go back to work at all. Things have just really progressed.
I'm not on medication. I'm breastfeeding and have a doctor who says that "I have everything I need inside of me to heal myself."
I'm just so frustrated. The doctor I had who would have helped me the most moved to another practice that my insurance doesn't cover. So now I don't even have a PCP. None of my specialists have seen me more than a handful of times and don't know me well enough to judge whether I'm lazy or truly need help.
Now I'm anxious because I'm wondering if I've screwed myself by applying and not waiting until I got to know my doctors better and had a team on board to support the process.
Any advice?
There are pros and cons to filing as soon as possible and delaying filing.

Filing as soon as possible gets the process started, gets your case seen by a DDS analyst to evaluate, a consultative exam may be performed and a decision should be made in less than six months. However, lack of substantial medical evidence almost always leads to a denial. Having substantial evidence is helpful, but the evidence also has to show that the medical condition is severe.

For SSI, the application date determines entitlement date which determines first payment date. For SSDI, the entitlement date and payment date can be 12 months before application. So for an SSI claim, delaying is possible money lost.

Filing as soon as possible also puts you in the queue to see an ALJ a year or two later, especially if your prognosis is uncertain or your current evidence is weak. Time will pass and you will either get better or worse. You may also learn more about the process so you can get the medical evaluation to either prove or disprove your allegations about severity.

Waiting to file while preparing could mean that your case could be approved right away, but all the prep in the world doesn't lead to an approval if you are not disabled enough under SSA rules.
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Old 04-06-2013, 02:12 PM #7
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Hello,
I agree with those that have said wait until you have a thorough application. Having multiple conditions and illnesses is to your benefit. Combined they equate to a qualifying condition. There are a number of things you need to do before applying:
1) Get copies of all medical records: office visit notes, imaging and surgery reports; including any psychological or physical therapy specialists
2) research your illnesses on line so you have a through understanding of symptoms that contribute to your inability to function at a job. Even IBS has symptoms that can prohibit working. Kept in mind that means even sedentary jobs.
3) Include all illness that you have no matter how insignificant you think they may be (asthma and allergies are examples).
4)The 2010 application only allows you to list them, not describe how they effect your ability to perform work duties. Example: cognitive impairment for you is a big one. ( It includes loss of higher reasoning, forgetfulness, learning disabilities, concentration difficulties, decreased intelligence, and other reductions in mental functions.) AS a result of the symptoms your ability to handle stress is decreased. So, you need to add an attachment that describes the symptoms of each condition and specify how the symptom effects your ability to work. Use adjectives and measurements. Example: Due to the excruciating pain in my legs I can only walk a block or climb 10 stair steps.
5) Do not allow your doctors to dismiss your limitations that disable you. Doctors don't determine disability only SSA does. Ask them to document in their notes your limitations. Then, ask them if they would support your claim for disability. If they don't find a new doctor.
6) With cooperative doctors ask them if they would write a letter to SSA listing your symptoms and limitations.
It takes time to prepare a through application, but it is better than waiting year to get your benefits.
Also considering completing an adult function report http://ssdi-help.com/ssaforms/ssa-forms.htm
If you have any more questions, email me here.
Best of luck
Trudi
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Old 04-06-2013, 07:59 PM #8
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Thank you guys. Though I can't say that I love the idea of waiting, I do think you're right and that's why I'm feeling uncertain about all this.
So now a really important question- what the heck do I do now? Since I already sent in the application, can I contact them to stop the process then restart it in a few months when things are better documented and more clear? Do I just let them deny me for the first time and not worry about it while using the next few months to figure things out then appeal the decision and have more info this time around? Can you reapply later after applying once?
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Old 04-06-2013, 09:10 PM #9
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I think you were smart to get the process going in my opinion. Let them deny you as you can appeal and get to the ALJ level which takes years. During this time use it to build your case and get evidence. You can always reapply with a new application. That is what I have done. I was denied twice and then got a lawyer and went to the ALJ level and was denied again. All that has taken 4 years. I have just started a new claim and have more evidence and diagnosis and more documentation by specialists. I would not withdraw your application. You have some pretty severe problems. Let it ride and work on getting more documentation. You have to show proof. Go to the hospital when having bad attacks and get the reports etc. good luck to you. I hope that you are able to recover enough to return to work but you can get disability for just a year if that is all that is needed.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 04-06-2013, 09:16 PM #10
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By the way depression and anxiety are not minor symptoms. People are approved for these conditions alone. Sometimes mental conditions are far more disabling than physical ones because they keep you from being able to perform any job. If a person is missing a leg but still thinking clearly with no emotional problems they are able to work far more easily than someone who has depression and anxiety disorders. Those are major conditions when applying for disability benefits. You need to start seeing a psychiatrist right away to document these disabling conditions. They don't just take your word for it.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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