Like many other Chronic Fatigue Syndrome patients, Peony went to a million doctors.
Like many other Chronic Fatigue Syndrome patients, Peony had a million tests.
Like many other Chronic Fatigue Syndrome patients, almost all these tests came back “normal.”
At the end of the day, she only had two small abnormalities: Low B12 and high inflammation markers.
Don’t worry. This story has a happy ending.
Peony won her case in seven months with no hearings and no appeals. Not only that, she also won her case for disability insurance through her employer . Peony was approved for Chronic Fatigue Syndrome, Fibromyalgia, & Chronic Pain Amplification Syndrome. Here’s how she did it.
Peony’s Story
This is what I learned: You don’t have to prove you are sick. You have to prove you can’t work. It seems like a small shift in perspective, but it is significant. It can mean the difference in between being approved and being denied.
I applied online, and then I followed up with a packet that I delivered in person to the Social Security office in my area. Here’s what was in my packet:
🌸 One: Medical Records
Every clinical note from every doctor visit I went to. I had to write to each place to obtain these and some places charged for them.
🌸 Two: Letters from Caregivers
I got letters from my caregivers (my mom, sister and hubby) explaining that my illness was highly variable and I was too incapacitated to work on a regular schedule. An affidavit is a letter that you sign and notarize. These letters stated what I used to be able to do and how bad things were for me now. They talked about my being a gardener and a Toastmaster and a figure skater and how now I was stuck on the couch and couldn’t do anything.
🌸 Three: Letter from Primary Doctor
A letter from my primary doctor stating that I was ill and couldn’t work and why I couldn’t work and how long they thought I wouldn’t be able to work.
🌸 Four: Letter from Psychiatrist
A letter from my shrink stating that I was ill and couldn’t work and why I couldn’t work and how long they thought I wouldn’t be able to work.
🌸 Five: Letter from Chiropractor
A letter from my chiropractor stating that I was ill and couldn’t work and why I couldn’t work and how long they thought I wouldn’t be able to work. I chose to ask my psychiatrist, doctor and chiropractor, because they all knew me before I got sick so they were best qualified to state how sick I was and knew the full effect of Chronic Fatigue Syndrome on my person.
🌸 Six: Symptom Diary
I included an illness diary that logged my symptoms and capabilities on a daily basis for about a month. Remember they are interested in how the illness impacts your daily life. You have to prove to them that you are unable to function normally. (Editor’s note: Be careful with symptoms diaries. They can sometimes help, but they can also hurt your case, depending on what you write).
🌸 Seven: Detailed Work History
I included a detailed description of past job duties and how my illness impacts my ability to do my job. (Here’s How Peony Described Her Work History)
Smart Tips from Peony
🌸 Document everything. Formally request all doctor notes, test results and scan results for every single visit to any medical facility.
🌸 It helps if you show up to a few appointments at your worst so they know how crappy it actually gets. Clean hair be damned.
🌸 Continuity of care is VERY important. See a doctor regularly. Don’t skip appointments. I had a general practitioner who I saw every 3-4 months, plus a functional medicine doctor I saw every 3-4 months.
🌸 In addition to my primary doctors, I also visited specialists: virology, endocrinology, neurology, rheumetology, neuropsychology, infectious disease specialist, and a Chronic Fatigue Syndrome specialist. I did a lot of testing. Just about all of these tests came back normal which is typical for CFS/ME.
🌸 Keep copies of everything!! I must have close to $200 in copy fees at Staples but things get lost and it is a good thing I had copies of everything.
🌸 I found the online application to be a long and tedious process. I would suggest using the paper forms instead.
🌸 Get all clinical notes (not just what they show you in online portals). Some doctor’s offices will charge for this.
🌸 Read the clinical notes, find out how your doc is documenting things and have them make changes if necessary..
🌸 Clinical notes tend to be riddled with errors particularly from larger institutions and they need to be fixed immediately because they become gospel. When I read my notes, I discovered that my doc kept writing down that my exams were “normal” and not including the fact that I was still showing signs of viral illness.
🌸 If your application is not approved at first, always appeal and do not miss the deadlines. You can appeal and get a hearing, and you can submit new medical evidence right up to the court date.
After Approval
🌸 When I came up for review, I sent them all my medical notes from the date of application to the current date. I did this for both Social Security and LTD. In both cases, they continued my coverage without further review or a visit to their doctor for evaluation.
Learn More
🌸 Peony won both her Social Security Disability case, and her LTD Disability case. (LTD is disability through your employer). Learn more about How Peony Won Her LTD Case for Chronic Fatigue Syndrome.
🌸 Peony used a rather advanced-level trick when she applied. She started the application online, but did not complete the rest of the application right away. This bought her gave her several more months to get her tests and medical records together. It is called “establishing a protective filing date.” Learn more.
🌸 Jasmine also had “normal” test results, and also won her case on the first try with no appeals and no lawyers! How Jasmine Got Approved Despite “Normal” Test Results
🌸 More ideas for what to do if all your lab tests come back “normal”
How to Get On 
Excellent info for those with ME/CFS. Thank you.
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Definitely check your doctors notes. The problem I’m having is with doctors. My initial diagnosis was from a rheumatologist who refused to fill out any SS paperwork. I changed to a neurologist who I thought was on board. We had numerous conversations and she signed for my disability tag. I then made an appointment specifically to fill out the paperwork. We didn’t finish, and she appeared to be unaware that was what the appt was for. She said she would finish it and I could pick it up. When I got it back she had written across the top that all answers were based solely on patient statements. When I got her notes, absolutely nothing was documented. They appeared to be basically cut and paste from the 1st visit with minor changes and were no more than a paragraph. The one from the document visit actually commented that I had brought in SS paperwork and made it sound like I had never mentioned it before. I saw her for over a year and we talked about this from day one. I was crushed. I’m now searching for a new Dr with the help of my PC but I’m on Medicaid so the choice of quality doctors is limited. Many of them are not taking new patients. My most recent experience was a physical pain doctor who denied my referral. I waited weeks for a decision, was given a different excuse each time I called and then was rudely told no. No explanation. It’s so aggravating because we should not have to go through this. There are tests that could be done, but they’re expensive, performed by different doctors, and require some out of the box thinking. But FM patients generally have cognitive disfunction that could be measured and tracked over time. I do my own through online tests and IPhone apps. Physical pain can be measured, or at least our reactions can be. There are ways to scan brain activity; they use them in scientific studies everyday. Our sleep patterns and activity levels can also be measured. If nothing else they could use the data from my Fitbit. But the current party line is there is no quantitative testing for FM, so we are stuck relying on doctors, too many of whom do not want to be bothered.
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Thank you so much for sharing this. Very helpful. I truly hope you can find a doctor who works well for you.
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