- CASE FILE
Seven years ago I was diagnosed with CRPS after shoulder surgery. Over these years many diagnoses have been added. Looking for real answers
ABOUT THIS CASE FILE
Seven years ago I had surgery on my right shoulder for a torn labrum. I had the same surgery on the left shoulder, by the same surgeon 4 years prior. This time, I experienced very severe swelling in my right hand and pain like never before felt. My surgeon assured me it was just swelling and that physical therapy would help. Physical therapy was impossible because no one could touch my arm or hand without extreme pain. I was sent to a hand therapist who saw my hand and said “have you heard of complex regional pain syndrome?” Actually, I had. I googled why my hand was so swollen and painful after surgery and CRPS came up! After a trip to the neurologist, it was verified I had CRPS. I was told it would take six months to a year to get over it.
So here we are. I now have full body CRPS, Gastrparesis, Trigeminal Neuralgia, Fibromyalgia, Inverse Psoriasis and more! Now, I was a fairly healthy and active guy. Hiking, golf, fishing...For seven years I have done none of those things. Just recently I have bucked up a bit and started walking. But any activity I do engage in comes with the consequences of a flare up of symptoms, which can put me down for days or weeks. Medication for me consists of Lyrica three times a day, Topamax three times a day, Cymbalta twice a day...I used to take opioids, but weaned off three years ago. Replaced with cannabis, I am much more healthy in that respect.
My reason for joining this effort is to raise awareness, possibly help someone in my position and finally...see if someone out there has a clue what may really be what is wrong with me/us? A disease once called reflex sympathetic distrophy, changed to complex regional pain syndrome because no one really has a clue. I was “possibly” diagnosed with MS twice on this journey, but no legions were found so not MS.
Looking to you friends! Hope this is a successful venture for everyone! Jon