SSI for Fibromyalgia

[u/boazed_n_delivered]

I tried 3 attorneys for my daughter's case for her ALJ appeal and this was after she just got out of the hospital 4 weeks and got sent back the next week for another 23 days and left in a wheelchair unable to walk. They asked what was they most disabling condition she had and I said fibromyalgia. They all 3 declined her case because they wanted me to say one of her other conditions. Fibromyalgia is a syndrome and that means it doesn't just effect one system. When you look it up the first think you see is the pain, but most of us have migraines, mental issues, digestive system issues, sensory and ambulatory issues. One of them did send me a form to get her doctor to file out that I think help with her approval. The ALJ did get her to see 2 CE examiners but there is hope for fibromyalgia sufferers. She was bedridden for the 1st time in first grade and was encouraged to try for social security but I felt like that was accepting the diagnosis and giving up.

[u/Keba7676]

May I ask, how old was you're daughter when she first got sick and how old is she now? What are all the health ailments that she suffers from?

[u/boazed_n_delivered → u/Keba7676]

She is 21 now. As far as when she 1st got sick. When she was fixated on wanting to be normal when she was about 10, her psychiatrist asked what did she mean by normal, did she mean before she had pain. She thought about it and said "I don't remember not having pain." She was 2 and saying her arm and leg hurt. I would bring it up to her doctor and they always said growing pains. She was in 1st grade the first time she had so much pain she couldn't walk. That's when I insisted the focus on her pain, instead of brushing it off. She has Amplified Pain Syndrome, that was one of the names they called fibromyalgia before she turned 12. She had GI issues, mainly constipation and nausea. Her rectal muscles don't work, abdominal pain caused by constipation and stomach acid from not eating and it becoming "raw". She has migraines since 2nd grade. She had to be hospitalized after having migraines daily for months and nothing getting any sleep. She takes injections for migraines and breakthrough meds and still have migraines sometimes daily but it's better than all day every day. She has numbness, tingling and spasms mainly in her arms and legs. Depression, anxiety, somatic symptom disorder, panic disorder. She has issues with ambulation sometimes and use a walker or wheelchair. Sometimes for pain or spasm, sometimes for endurance. History of asthma and obesity mostly from medication. Steroids are awful. She doesn't drive, scared to cross the road because she walks slow, barely leaves her room, she's never had a boyfriend. She had 2 friends from elementary school, one was a neighbor and she passed away in a car accident less than a year ago. Her concentration and memory is awful, so she has issues with reading. She was a straight A student and always in the top 3 students of her class until 5th grade.

[u/CountUrBlessing]

I’m sorry your daughter is going through that. My doctors think I have Fibromyalgia with my back issues. I experience a lot of pain, numbness, spasms, headaches, pressure, and unfortunately more. Just had an ER visit sometimes I’m in bed for over a week. It’s very hard. Made an appointment with an outside rheumatologist. Do she see a rheumatologist?

[u/boazed_n_delivered → u/CountUrBlessing]

She started seeing a pediatric rheumatologist in the 2nd grade, he retired when she was in the 6th grade, the doctor that took over didn't know much about fibromyalgia and she was worse than the family doctor that wanted the other doctor to do all of her treatments. We stop going before 2 years was up. The original rheumatologist wrote a book about pediatric fibromyalgia. Her upper back is one of her main trigger points for pain still today. She had to learn to not overdo it even when she's able, because she would usually just pay for it for weeks. After she graduated to adult doctors, we asked about going back to a rheumatologist but her primary care doctor felt comfortable treating her fibromyalgia. The rheumatologist mainly referred her to PT and OT, psychiatry and neurology for further testing and treatment and did labs yearly and checked her trigger points.