Hi. I’m 5 years post diag, and generally doing well … I think. As far as muscle pain is concerned, I get cramp in my toes quite a lot, & bouts of what I now think of as “Normal dystonia” in my right shoulder and inner thighs. Nothing, as the old saying goes, to write home about.
“The Event”: About 10 days ago, I was about to go to sleep, relaxed, nothing unusual going on, no missed dopa tabs or anything, when the back of my right hip started to tighten up. Within minutes, it was rock solid and had spread all around my hip - to the hip flexor and inner thigh. 9 out of 10 on the pain scale, my whole leg locked up. There was some minute-by-minute waves in the pain, but no dystonia tendency for movement; I couldn’t move it at all! Couldn’t stand … couldn’t do anything.
Got an ambulance in, and the very experienced paramedic was seriously surprised by how tight all the muscles were. She asked me to try an extra co-careldopa tab; no change. 4 and a half hours in, it took 3 measures of morphine before the leg was movable enough to get me on a stretcher.
10 days and some muscle relaxing drugs (diazepam) later, the hip is still very swollen and covered in a black & blue bruise, but the pain is back to “Normal dystonia” sort of levels.
Complicating factor(s): The hip was semi-replaced - metal on metal “Resurfaced”, like the op Andy Murray had - about 15 years ago. Also I dislocated it a year ago. (The pain from the recent muscle tension was far worse than the dislocation!)
The Question: Parkinson’s or Something Else? Neither the paramedics, hospital doctor nor GP were sure what happened. Obviously it could have something to do with the hip resurfacing: the op I had can lead to complications, but I can’t find any reference to anything like this being one of them. I have found some references to Parkinson’s dystonia causing the “Everything locking up” effect I had. But nothing suggesting it might get as widespread (all around the hip) or as painful (morphine is pretty serious stuff!) as this.
So. Does the assembled experience in this forum think this was a Parkinson’s thing? Perhaps Parkinson’s made something which was happening anyway worse by adding some of its own dystonia on top? Or should I blame the - obviously troublesome - hip joint completely?
And doesn’t have to be hips! Has anyone experienced “Locking up” dystonia to this sort of extreme level anywhere else?
Sorry for the long post - it’s a bit of a complicated question. And thanks is advance for any thoughts.
