Today has been a rough day. It started at 6am when I woke up and couldn’t go back to sleep. I had to get up and shower anyway so I got up and had a cup of coffee. I then showered which flared up my back. That took forever to calm down. I didn’t want to take a Zanaflex because I knew it would make me sleepy. Once it calmed down enough so I could get dressed, I called an uber and went to my appointment. I was thankful I did this because I knew I wasn’t going to be able to walk to the bus stop and then walk to the building I needed to go to with my back being the way that it is.
There was traffic but I made it to my appointment in time. The doctor was running late. About a half hour after my appointment was to start, she called me in her office. I explained why I was there and thought the CRPS was spreading to my shin. She took a history and then examined me. She confirmed that it was CRPS and went over medication options which were not many. She said an SNRI might help the pain but I would need my psychiatrist to prescribe it as it is a psych med. I see him next week so will talk to him about it.
I feel devastated that the CRPS has spread. Right now it is flaring up because of all the walking I did today. In the afternoon I had PT and got dry needled in my back. I hope that this works in calming down the spasms and cramping I get when I try and do stuff.
Today has been a long day and it has been really difficult. I am angry that it took so long for me to get diagnosed with CRPS and now it is spreading because I couldn’t treat it within the time frame of when it started. I am now left to deal with pain every fucking day for the rest of my fucking life. Makes me so mad that I saw more than 20 doctors in and out of Boston and no one was willing to tell me I had CRPS because it wasn’t a typical presentation. My PCP at the time kept sending me to doctors to find out what was wrong because he just thought it was a mechanical issue with my ankle. All the while I was working my ass off, 50-60 hours a week between two jobs. Once I had to go into the AFO I had to stop one of the jobs and then four months later I was deemed disabled. And I still didn’t have a diagnosis of CRPS. That didn’t come until five years later. It took 8 fucking years to get a diagnosis. 8! A bone scan proved I had it. It was in my damn bones in my foot and ankle. Now it is in my shin which is the large bone in the lower leg called the tibia. I wonder if the new neuro would order a bone scan to confirm CRPS in the bone again.
I sent a message to my therapist and psych about the spread. I haven’t told my psychiatrist yet. I will when I see him next week. I hope by then the correct time I am supposed to see him is in the patient web thingy. Right now whoever does his schedule has me seeing twice and one of the times is booked when I am seeing another doctor.
One thought on “bad news”
so sorry to hear it has spread, this is awful news! Sending a hug, wish I could do more! Know I am always thinking of you!