View Full Version : Need some advise on Disability

08-26-2013, 05:09 AM
I have been dealing with Lupus related symptoms for a year now. Looking back, I started having symptoms in my early years, but in the last year, I have declined in health. I have limited mobility, cognitive function problems, and organ impact. I have been to 3 doctors regarding the Auto-Immune symptoms I suffer. None of these doctors have said a definite diagnosis. They have spoke of Fibromyalgia, but that doesn't explain all the things I suffer.

My question is: If I can't work and don't have a definite diagnosis, can I start the process of applying for Disability?
I have done a lot of research on Auto-Immune diseases and my symptoms back up Lupus and I am on medications to treat Lupus. I am on my way to see a new Rheumatologist. I am hopeful he will listen to ALL my symptoms and take them into consideration. I feel my doctors have been dismissive of a lot of symptoms I have. My blood work has shown 2 positive ANA, but with low titer now. So many things have been affected through out this last year.

I have adapted my lifestyle to compensate for my inability to do much due to rapid inflammation through out my body. I have been a stay-at-home mom for 7 years now. I worked a full-time job since I was young. I have 2 kids. One is in Middle School and my other is 4 and starts pre-school 2 days a week. I planned to go back to work part-time when pre-school started, but I physically can't. Sadly, I have major flares after just going to Wal-Mart! I was a person who worked from the sun up to sun down and beyond around the house. Taking care of my family and home, painting, gardening, and such things. Now, I am incapable of many things. I have lost major muscle mass in my body due to inflammation and pain. I can't take narcotics due to them affecting my stomach. I do take Naproxen, but that just don't cut it most days. The pain gets in your head and you can't focus properly. I do not drive on those days.

I would really appreciate any advise. I feel like if I apply without a diagnosis, they will think I am faking or something. I don't know if others have felt that way or not. I am not sure what they look at for Auto-Immune diseases. I have heard it can take up to a year to be approved. I am very confused and scared about all this.

Many thanks to anyone who reads this!:)

08-26-2013, 06:52 AM
I cannot help ... as I live in Australia, and our rules are different. but I know ruziska knows what departments to speak to. I suggest you send her a message asking for direction.

08-26-2013, 08:59 AM
Thank you Steve. I appreciate the response and the suggestion.

09-09-2013, 09:50 PM
Hi creek bank :)

I, too, am having headaches, cognitive dysfunction, body aches, brain fog and huge fatigue on a daily basis. I am currently on short term disability but live in Canada so I don't think any of my info will be helpful... But I can empathize!!! :(

09-10-2013, 12:35 AM
Hello CreekBank...

Here is the link to the post I wrote a while ago in this forum. Follow the yellow brick road. http://forum.wehavelupus.com/showthread.php?5930-SSI-evaluation-with-SLE

If none of the links help you with your questions or you need any paragraph interpreted I would be more than happy to help you with it. It is a long arduous process..can be up to two years. I would suggest speaking with a Social Security Disability Attorney. He does not get paid unless you receive eligibility as per the law. he would receive his fee from your retroactive disability date if won. Lawyers and non-attorney disability advocates can only charge claimants no more than 25% of the past-due benefits paid to the claimant up to a maximum of $6,000. So, it would probably be worth it to find one.

With that being said, it seems you do not have a SLE diagnose, nor any documentation to say as such, but perhaps he/she might find something else in your medical file or direct you to 'his doctors' to enable you through their documentation to receive disability benefits.

May you find some wellness in your day today...Hugs..Oluwa.

09-10-2013, 03:08 AM

Thank you for the valuable information. I am starting my claim for disability and I know it will be a long road ahead. Do you think I should get a lawyer right way or wait until denied the first time?

I don't have any documentation that says SLE, but have been to 3 doctors regarding the symptoms I have. I am on the way to Hershey Medical Rheumatology in October. I try to remain hopeful they can help me. I am declining rather quickly in my health and that appt. seems so far away! I have been having chest/heart pain since July. All test are normal and they say they don't see anything wrong. I have been on Plaquenil (400mg.) per day, Nortriptolene, and Prednisone for almost a year now. I think they are working to an extent, but I am still declining. I am scared about all this. I had about a month of good days in the last year. Fearful as to what my future holds if something doesn't soon break. I am frustrated and depressed about all these things happening to me.

Thank you for listening and also for your response.


09-10-2013, 03:13 AM
heather 123,

I am sorry to hear you suffer these things also. It is a struggle for us everyday. I hope you stay strong through this. Have you found anything that helps you with these symptoms?


09-10-2013, 01:18 PM
Hello..hugs, Creekbank.

Some say to wait until you have been denied, but if it was me I would atleast seek one out for a consultation. It will cost you nothing.

I believe you would have to have a diagnose of some sort to receive benefits. I could be wrong. It would be like saying I have a chronic cold to them, the people who chair the denied or approved bench. Here is a link for Adult Impairments they consider to be eligible for disability. http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm The key to receiving disability is documentation...for your DRs to be thorough. Diagnosing a person is not enough. One needs a paper trail.

Regarding an immune disorder this link may assist you with your questions. http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm You can't force a decision by SSDI...you can only present your case, thoroughly, correctly...and completely. This is why I would suggest seeing a Social Security Disability Lawyer. Would you like me to research for one in your area?

With your chest pains, do you get relief when you lean forward? If so, it could be pericarditis. It could be pleurisy, costochondritis..so many things. What do they say it is not? If one can not give you a diagnose, I would think they should be able to tell you what it is not. Do you have someone that can be with you at your appointments? Do you feel a bit intimidated by DRs? If so, ask someone to go with you...have a list of questions so they can keep you track and/or they can ask for you.

To receive a diagnose of SLE is is a process of elimination..to exclude what it isn't..and not so much as to include. There is a criteria also, but the criteria is not so conforming now I believe that you have to have 4 of the 11 anymore. Do you know what they are? ARC...the 11 criteria though?

If I may, who prescribed the Plaquenil and Prednisone..maybe you should consult them again until you see the Rheumba in October. Regardless if you have SLE or not, your symptoms should be managed. Please seek out your primary DR...

Keep trying to find your wellness...Hugs..Oluwa.

09-10-2013, 08:45 PM
You can start the application process . However, you will be asked for information from your doctor( s). Documentation is the key- the more you have, the better. Contact your local center for independent living and they ill help you through the process free of charge. To find a local center, go to www.ilru.org.

09-11-2013, 03:35 AM

I called my local center for independent living. They were helpful with some filing information. Thank you for sending the link.

09-11-2013, 03:53 AM

You are so kind to send all this information. I found them to be very helpful to me. I feel I meet most of their qualifications for auto-immunity disorders. I have all my med files for the last year and can show I have been having these symptoms for over a year.

My rheumy started the Plaquenil and my family doc has had me on Prednisone for months now. The rheumy was not very understanding of my complaints. She insisted it wasn't Lupus because I did not have the "butterfly rash" across my face. I meet most of the 11 criteria for Lupus. That's why I am on the way to a new one. My family doctor says he is only a general doctor and doesn't like to get into the auto-immune issues. He did sign my application for a handicap tag due to my inability to walk. With my heart, they have done a echocardiogram to look for fluid due to heartbeat sounding muffled. It took them 3 weeks to get me in and the fluid had went way because he upped my Prednisone. Recently, they have done an EKG because my heart was racing and BP was sky high. They thought I may be having a heart attack. They ruled I was not having one. Requested a chest x-ray to look for pneumonia and sent me home. They determined the x-ray was normal, ruled it bronchitis and sent me home with antibiotics. I have had bronchitis and this is something different. I get pain into my shoulder and arm when the heart starts to hurt. Laying down is definitely worse for the pain. I can't say I get much relief from leaning forward, but I do get a little.

I think I will take your advise about someone going to the doctor with me. I think I will see if my husband or mom can go. I am going to consult a lawyer for a consultation about disability. I am incapable of working. I was hoping to go back, but I can barely dress myself. It's time I accept it's not going to happen anytime soon.

Thank you again for ALL your support and information.