This is less of a blog and more of a “how-to” apply for Social Security Disability benefits. I have intentionally written it in a simple format to help those whose symptoms are quite severe. I share my experience as a social worker of 20 years, guide you through the system and providing a strategy that will make this difficult process easier and more in your control.
Please take your time reading this. Bookmark it and read it over again if you have to. Have someone help you read it if it’s too tiring; every step is important.
M79-7 is the diagnostic code for Fibromyalgia.
Pre-FMS, I was a Social Worker for 20 years, serving persons with disabilities. The following information was essential in my being awarded Social Security Disability. I was only 38 years old at the time -- SSDI’s standard is to not award benefits to anyone under the age of 50, at least not in the State of California. On October 1st, 2015, Fibromyalgia was recognized by the ICD-10 list of codes as a real disease.
What you need to know about applying for Social Security Disability benefits:
SSDI bases their decision to award benefits based on your medical records.
Your medical records are based on what you tell your healthcare providers, as well as any tests, scans, lab work, etc. SSDI will request your medical records from all health care providers listed on your application.
You have to be your own advocate. This is difficult while experiencing chronic pain, bone wearying fatigue and fibrofog. Healthcare providers and Attorneys are too busy to follow up for you. If something falls through the cracks, it’s up to you to know and inform them.
Ask for help. If you are too ill to track your health care information, show this to a trusted family member or friend and ask for their assistance. They can accompany you to appointments. You can also sign a waiver allowing them to speak with your healthcare provider, be a contact person and make appointments.
Write EVERYTHING down. Since we cannot always count on our memories, taking notes and following up to make sure your healthcare provider has followed through with medication prescription, refills, or referrals, is vital.
Applying for Social Security Disability Insurance
This varies from state to state, and is different in other countries. In California, it is standard operations to be denied SSDI with the first application. An appeal is surely inevitable and a lawyer is necessary.
What follows can seem overwhelming, but take it step by step.
1. Get a Disability Lawyer
A Disability Lawyer can be essential to being awarded SSDI benefits.
- They do not charge a fee up front.
- They take a percentage based upon your first SSDI check
- They can file for back monies starting from the date you first applied, if you must appeal.
- Children under age 18, living at home, can get SSI benefits to help with their living costs.
2. Apply for SSDI
You can apply for Social Security Disability online by clicking below.
- You will receive a confirmation letter when your application was received.
- This can take months. Start a Disability file and place the confirmation letter in it.
- You may be provided your case manager’s name, date and time for a phone interview.
- You may be asked for additional information.
3. Fill Out the Physical Residual Functional Capacity Assessment
THIS FORM IS A MUST when applying for SSDI benefits! It’s not enough for your PCP to say you are disabled and unable to work. The Social Security Administration must know what tasks you are capable of physically doing. This requires your PCP to complete, but they will need your help in doing so.
I read through the form first to know how to answer my PCP’s questions. Until reading the Assessment, I’d never really thought about how long I could stand, walk or sit without an increase in pain. In many cases, I had to test myself to be able to provide accurate information. The form is lengthy. When scheduling an appointment, tell the front desk personnel what the appointment is for. Even with providing the answers to my PCP’s questions, the appointment was still 25 minutes long.
We know there needs to be a different standard for evaluating Fibro for SSDI.
The assessment does not allow that people with Fibromyalgia can sometimes do many things, but may end up in severe pain and bedridden for days, even if we do not over extend ourselves. For example, after a 30 minute hike, I was required to wear a neck brace for three weeks because of the extensive pain and weakness in my neck. That was years ago and I haven’t hiked since. I could physically hike at that time, but the painful consequences were simply not worth it.
When completing the Assessment with your PCP, keep in mind how you most often feel and any restrictions made by a member of your healthcare team. For example, I know I can carry more than 5 lbs. It will hurt me later if I do and my Physical Therapist told me not to. Therefore, the response I give to the question of how much weight I can carry is 5 lbs.
KEEP IN MIND: SSDI will request what health conditions prevent you from working.
List every diagnosis. My PCP lists my diagnosis’ on the top of my chart at every visit. I review them at each visit and let her know if something is missing or incorrect. I am given a copy after every appointment and I take the time to make sure it is correct. Then I file it.
Your medical records have to be accurate because that is what SSDI will be basing their decision on.
Applying for SSDI is one case where having several healthcare providers is good.
It can help to see a Psychiatrist for a diagnosis of typical Fibromyalgia symptoms such as generalized anxiety disorder, Depression, and P.T.S.D., if you experience any of them.
It can help to see a Pain Psychologist to get a report stating you are not a meanderer.
If you live in CA or are able to travel, I would highly recommend making an appointment with Fibromyalgia/Chronic Fatigue Specialists, Dr St Amand in Los Angeles or Dr Melissa Congdon in her San Francisco or Mill Valley offices. They are the top experts. Dr. Congdon provides a free 10 minute one time consultation by phone. She will also continue assisting you by phone for a reasonable fee charged to your credit card.
After applying for SSDI, it is helpful to review your medical records. Pace yourself.
You have probably felt ill for a long time before applying for benefits. It is important to begin contacting your PCP and other healthcare providers for your medical records to review them for accuracy. Begin with the most current.
- If you find any mistakes while reviewing your medical records, contact that health care provider and ask for the corrections to be made.
- Ask for a copy of the corrected document.
- Make a copy and file it under that health care provider’s name.
- Send the updated document to your SSDI caseworker by Return Receipt through the Post Office. This will provide proof it was received.
- Enclose a brief letter of explanation to your case manager. Here’s an example:
777 Free Drive 4/31/16
Upon reviewing Dr. Jones report dated 3/4/14, it has come to my attention that the information regarding my current physicians is incorrect.
Enclosed you will find a copy of the updated and accurate information.
Please refer to this document when making your decision about my eligibility.
Case number xxxx-xxxx
Date your calendar for one week to follow up with a call to your caseworker to see if they received it. If they have not, mention you would like to call again next week. Document the date and time you called and their response.
A Note About SSDI Case Managers
They are most likely exhausted and overworked.
When I was a social worker, I was responsible for 79 clients. To be effective, a reasonable caseload would have been 50. I did my best to keep up, and lasted less than 3 years, putting in 50+ hours every week. The office closed early on Fridays, yet I stayed an extra 3 hrs. To try to catch up. I remember the clients who were appreciative. There were few.
It makes a huge difference if you are kind, patient and understanding. They will remember your kindness. I knew social workers that would put a client on the bottom of the “To Do” pile if that client was rude. We all are human and not always patient when stressed about money and in chronic pain. The best recovery tactic is a sincere apology. It’s never too late to apologize and be specific about what you are apologizing for. Yes, it’s our right to have SSDI and to have a case manager do their job to help us. However, they are human, too, with stress of their own. It’s not hard to be compassionate towards them for doing an overworked, underpaid, thankless job. “Please” and “Thank you” go a long way!
Attorney Advice: NEVER say "I can't do something".
I was told to say that when I do an activity, to explain the outcome on my health. For example, when I do this activity, it causes pain in my mid and low back, flare up in all over body pain and chronic fatigue for days, and muscle spasms.
- I can vacuum for about 15 min. However, it causes fatigue and excessive pain in my back and shoulders for several days.
- I can do light shopping occasionally, but my husband does the major weekly shopping. For me to do so would cause severe pain and fatigue, and occasional migraines, leaving me in bed for days.
- I can shower, but I have to rest after drying off, after getting dressed, and several times while applying make up and drying my hair. That is if I can even shower that day.
With this syndrome, we usually do not know for 24 hours if we have over done it. Your caseworker needs that information and it’s generally not in your PCP’s notes unless you told them. Even that’s not a guarantee that they wrote it in your file.
It’s preferable to mention all of your lifestyle adjustments because little is known in the medical community about the devastation of Fibromyalgia Syndrome. It made a difference in my favor, when I informed them that I had cut my long hair to shoulder length because it was too painful to wash it and I was too weak to brush or style it. Changes to one’s daily living tasks are important to mention.
Provide consistent information to all of your health care providers.
Review your records after every appointment for accuracy.
- Information you supplied during an office visit
- Current medications
- Current members of your healthcare team
- Accurate list of diagnosis
- Make a note of any corrections for that health care provider
- Make sure the corrections are made
WHAT FOLLOWS IS VERY IMPORTANT: Keep copies of everything.
Make a file and keep a notebook with it. Have it with you at every appointment and during every phone conversation. This applies to healthcare providers and SSDI interviews and follow up calls and appointments.
- Note the date, time, doctor, specialist or support staff’s name, any changes to treatment, medication or referrals.
- When speaking with your SSDI caseworker, write down their name, number, extension, the best time to reach them, any information they need from you.
- Write down the date you sent any information and what it was for.
- Consider sending all documents Return Receipt Requested through USPS.
- Make copies of ALL information before sending it. If it’s lost, you won’t have to redo it. I learned this the hard way.
I cannot stress this enough. It's amazing how many forms get lost. Remember, I used to be a social worker.
Next Steps in the Process
1. Follow up with the disability office to see if they received your file.
If they have not, tell them when you applied and ask when would be a good time to call back to check again (You do not want to be a pest). If they have received your file, ask if your case has been assigned to a case manager. If so, write down their phone number and direct line.
2. Call the case manager and introduce yourself.
Remember they are overworked and you will most likely get an answering machine. Be brief or they won’t listen. A helpful hint is to write down what you want to say and just read it to the answering machine. For example: “Hi Ms. Jacobs. My name is Lynn Phipps. I recently applied for SSDI benefits. I just spoke with Mr. Smith and he informed me that you are my caseworker. Thank you so much for your help. My phone number is xxx xxx xxxx. I look forward to hearing from you. Good bye.”
3. Call to check on your case status.
Ask your caseworker how often a reasonable time would be to call to check on your case status. Write all of this down; dates, times, name of the person you spoke with, a call back number, what was discussed.
4. Watch what you say to your health care providers.
The SSA read in one report that I thanked my Dr for giving me my life back. It was taken out of context. What I told the doctor was that I no longer felt life was too hard to live before I met him, but he didn't write all of that in his report. It was enough for them to reopen my claim.
Final Notes From Lynn
I was awarded SSDI benefits after I appealed their decision not to award me benefits. Because I requested to see a Judge. Otherwise, a caseworker makes the decision. They denied me the first time, so I wanted to speak for myself at the appeal. You do have the choice in the State of California.
My Attorney was not allowed to be with me, and they almost sent my husband out of the room, but they allowed him to sit in the back of the room away from the proceedings.
Although, as a social worker, I had often spoken with many Judges in court, this was anxiety producing. This was about getting the help I needed. I made my own case by answering his questions, succinctly and politely. I dressed nicely, but not over the top. Judges do not understand that we only feel good enough or have the energy to look nice once in awhile. The judge actually said, "So you have Fibromyalgia, too?" He felt bad for me. Of course I had other things listed that are a part of the syndrome such as PTSD, anxiety, depression, insomnia, which helped make my case.
The Judge may ask why you feel unable to work, so give that some thought. It is difficult to describe the effects of FMS/CFS and it’s myriad symptoms in a few sentences, so reviewing fibromyalgiawellness.info, may provide some assistance.
Keep in mind that when we say we have chronic fatigue and pain, normals, including Social Workers and Judges, can only understand that from their own point of view. Perhaps they recall a time of being exhausted after a long day or week at work or working out at the gym too long. If you mention chronic fatigue, describe how it feels to you. I describe it as a bone crushing fatigue that keeps me from being able to be able to roll over in bed at times and is brought on by nothing. When I say I suffer from chronic headaches, I add that I have had a 24/7 level 6+ headache since 2004. It never stops.
It may help to take a copy of the list of FMS/CFS from fibromyalgitreatment.com to your hearing and offer it to the Judge for information on your disability. They are still learning about this Syndrome.
Lastly, be careful on good days when you’re out with friends and family. There have been cases of disability benefits being revoked because someone was seen on social media doing something they said they couldn’t. It is not yet understood that with FMS/CFS, we can have an occasional good day, but pay for it with several days in bed from chronic pain and fatigue afterwards.
There has been mention of the need for a separate disability form for FMS/CFS patients because of this. To date, we are lumped in with everyone else, even though our Syndrome is unique.
My best to you on getting the benefits you deserve.