- J
- J
- K
Hi, I am Pam's mom. Pam was diagnosed with AMPS (CRPS/Fibromyalgia) last March. She has had 65 various types of appointments and treatments in one year. Her records exceed 120 pages for 4 years. I have exhausted myself and all of my resources. I need more help continuing Pam's pain management. I am a solo parent- our only income, her sole physical care provider; when I have to choose between the two we suffer. I have an Etsy store but have not been able to get it to generate extra income. I will be applying for disability for her but that can take months.
With school starting her 504 accommodations allow her to go home early if she is in too much pain; cyber school is not recommended. The following is basically what her 504 is: http://www.thblack.com/links/RSD/helping_children.pdf
Right now I'm afraid I won't be able to afford to be available to get her if she is hurting and there isn't anyone else to drive her; the bus hurts. Certainly the hope is she'll make it through each day, but she still has pain at about an 8, which is not as well as we'd hoped by now. And for 3 years now the cold weather has greatly debilitated, so I need to be prepared...I have plans to get her to hot water therapy pt if needed, but again, I'm currently not in a position to take off of work anymore.
How we got here:
Her knee pain started 4.5 years ago, around age 11. They did all the tests for Lyme's, Leukemia, etc., then an xray confirmed Osgood Schlatter's disease; we were told she would grow out of it. Pam did physical therapy early on but it made the pain worse. She developed severe depression at 2 years of pain, and other symptoms emerged. The last 3 years she has had a 504 accommodation at school. Last fall the specialist had us see a second one who diagnosed no Osgood Schlatter's, but a mechanical issue of patellar maltracking and severe tendinitis. Pam did physical therapy again last December and ended up in so much pain she could not make it through full days or weeks of school. She missed over 20 days entirely, and had many half days.
A Rheumatologist in the chronic pain management program diagnosed a neurological misfire they now call AMPS- Amplified Musculoskeletal Pain Syndrome. It is an umbrella term for pediatric Complex Regional Pain Syndrome and/or Fibromyalgia. Overall kids are supposed to have a better chance of remission, but Pam has had it so long it is proving to be be very difficult. It manifests uniquely for each person, but there are symptoms they find after all other things are ruled out. Pam has many symptoms of Fibromyalgia (like extreme fatigue, headaches, fainting, random shooting pain), and trademark constant burning of CRPS in both knees (Pam has said for years it feels like there are little pieces of glass in her joints, or knives in her knees).
Pam was treated and completed PT and behavioral therapy for coping skills. They say function returns first, and who knows when/if pain will go down; this is a life changing diagnosis. In May she had a setback we are still working on- she passed out and got a concussion. She is currently seeing a chiropractor 3 times a week for neck pain. She was just discharged from the concussion follow ups, but they confirmed the residual pain on her head at the impact spot is now AMPS related. It is common for it to spread, especially after another injury.
This is very overwhelming, and we'd be very grateful for any support.
Thank you in advance for your donations and shares.
For more info about pediatric CRPS/RSD: http://rsds.org/youth/