A Nauseating combo of disorders from birth only to worsen 14 years later
So Being born with the combination of ADHD, Autism and Tourette syndrome was bad enough only to have injury after injury then a tonsil removal surgery at 5 years old. Makes one think that life didn't want me, right? Yet I push forward determined to show that despite my rough past I could push through. Then the pain sets in after I sprain my right arm that I had already broken when I was 2 and the pain kept worsening and I was told it was nothing. My motor skills in the arm start getting worse and unpredictable again was told it was probably nothing, I end up going on a hellish learning journey out of state. Finally got diagnosed with RSDS at 14 only to be told it didn't exist when I got back in state then another journey happened and I learn it's been renamed to CRPS aka Complex regional pain syndrome. I learned about my Dissociative identity disorder in the process and that my alters have been doing their best to ease the agony. Life goes on and all I can do is push through breathing remains a cold burn, eating becomes a gamble, every time I try applying for jobs I get overwhelmed, even forgot what age I was due to the painful headaches and cold skin feel. I'm sitting here 22 and unable to fathom having my peaceful happy life I dreamed of.
Hi
, I just wanted to check in and see how you were doing, and hoping things are feeling a little lighter. - Warmly, Donna (Team Member) Not great a series of storms are rolling through shortly after I got my pain meds back and my left knee has recently put me on the bathroom floor , Oh, I feel you. I've had a left knee injury since high school (45+ years ago), and a right knee injury from work several years ago, plus a right leg below knee prosthetic, so I'm not steady on my feet usually. When the weather kicks up my knees can threaten to unceremoniously dump me on the floor.
My prosthetician does mobility work as well, and makes supports and braces. Maybe your doctor would give you a referral to an orthotics clinic so you don't end up on the floor again. I hope he can. - Warmly, Donna (Team Member)
Hi @MarionetteSystem, oh my goodness, that is so much to deal with! I'm hoping you have a robust support system around yourself. Is the pain manageable at any time? Please know that we're here to share support. - Warmly, Donna (Team Member)
I don't trust many of the PCP's in the network I have to use from past experience with the whole network but at least he knows to send me to someone more knowledgeable so they can send me to the right place. My pain doctor is withholding judgement on whether I have Fibro or CRPS because of how much of me is affected until we get more knowledge on how my body reacts with my medications. , I'm glad to hear that he is at least open to giving you the referrals and resources to get some meaningful help! Sometimes that in itself is a a trial. The difference between Fibro and CRPS can be a fine line. I'm glad your pain doc is willing to put in the work to find the key for you. He sounds like a gem! - Warmly, Donna (Team Member)
