alodynia

The day you find out you have muscular dystrophy might be different for each individual. For me it was the icing on the cake because I already had eight spinal surgeries over the course of ten yrs to address herniated discs. So when my legs and arms started to atrophy my Dr and I thought it was from the surgeries but I was still in pain and getting weaker by the day. After three yrs and three trips to Los Angeles and four Neurologist a partial diagnosis it's never good when the Dr says I have never seen your phenotype before and there is no information on it.

I honestly thought my dues were paid after all those surgeries but I was wrong and I let hope drive me to think so. I'm totally screwed now all my muscles are deteariating and the pain is relentless. What is my take on this? My inspiration to keep going has gotten me far however this development will take everything from you if you let it. The brain isn't wired to handle a 24hr pain cycle so eventually it changes the chemical makeup so now I'm on antidepressants and pain medications.

It's not ideal but I seek pleasure naturally by listening to music or light gardening distractions that are healthy definitely help. I also don't feel cheated on life because the first forty years were pretty good and when I was able I took as much as I could. I also am very fortunate to be taking care of my mom and I live in a beautiful foothill town in the Sierra. Don't let life ruin your whole outlook.🙂#MentalHealth #DegenerativeDiscDisease #MuscularDystrophy #MDD #BorderlinePersonalityDisorder #alodynia #Hyperalgesia #Disability #etc

I can barely remember the day it started or maybe I have evolved into some kind of numb punching bag. After 15 years of chronic pain and immobility I am forced to take pain pills ever day. If you can ride this journey without it changing the chemical make up of your brain my hat is off to you. The stigma of taking antidepressants and being on pain pills is something you never shake when we live in a society of ableism any deformities are considered a handicap.

This is why I feel like a fraud my mental and physical wellness are being propped up by medications the real me is probably lost and always will be. However if I don't take the antidepressants my agoraphobia and depression comes back like a freight train. If I don't take the pain medication I can't walk even with braces and my blood pressure (more pills) will go through the roof. I'm stuck on this ride until my last breath because there is no cure for my rare muscle disease each day counts as being upright and not bed ridden my worst fear.#MentalHealth #MDD #OCD #MuscularDystrophy #PeripheralNeuropathy #Disability #alodynia #Hyperalgesia #DegenerativeDiscDisease