Tag: CRPS (formerly RSD)

bad news

by Midnight Demon, posted in blogging, CRPS, depression

Bad news

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.

Letting go of a blankie

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, gender dysphoria, mood disorders, physical pain, psychache, PTSD, recurrent major depressive disorder, suicidality

In keeping with what I wrote yesterday about suicide and future planning, I tweeted this gem “As someone with lived experience, it is hard to let go of the familiar pain. It can be comforting sometimes because it is all we know. Changing or letting go of the pain can be painful in itself. It’s like letting go of a blankie. Hope this makes sense.”

I’ve had horrible insomnia today. I woke up at 1 am and could not go back to sleep. I was able to rest for about an hour. I’ve been keeping my bladder on a 3 hour schedule so I am not overfull and the urge to go isn’t horrible. It has made cathing easier. Because I was up so early, I decided to get my blood drawn for my Testosterone level. It just came back as 294 so I think my doc will be pleased. I have to tell her to give me two vials at a time because one vial just doesn’t work for the dose I need. I used my last refill today.

I made more appts with my PT today. She doesn’t have time next week to see me so I am off a week. I hope she dry needles me tomorrow in my back because today they were flaring big time. I was so miserable as my ankle has been in a flare for more than 24 hours now. I’ve been taking zanaflex around the clock to try and keep the spasms at bay but it might as well be a sugar pill I am taking for all the good it is doing.

I’ve been wicked thirsty today. It is hot and muggy. I had my Starbucks 4 shots espresso with soy milk. It was so good. That has been the only caffeine I have had today. I need to shower but I have no energy. I also need to brush my teeth. I meant to call the dentist today but I never did. Need to find out why I am having jaw pain.

I see a new neurologist tomorrow. I am kind of nervous. Hope she can help figure out the shin pain I’ve been having. Hope it isn’t a CRPS spread. That is what I am worried about as the area is swollen. Just hope she doesn’t want to change pain meds on me. I will be taking an Uber there as I don’t want to expend my energy too much as I have PT in the afternoon. Around noon I am getting my haircut. Got to keep the side and back buzzed at all times.

making phone calls and being on hold

by Midnight Demon, posted in blogging, chronic physical pain, CRPS, depression

Making phone calls and being on hold

I got my new SIM card for my phones and put them in. Unfortunately, I am unable to install the new voicemail feature and it said to call a number. I did and was put on hold. I also called my service provider to take a line off my account and was put on hold. Catheter company called just as therapy was ending so when I returned the call I was on hold. Doesn’t anyone get this lucky when making phone calls? I wouldn’t mind but the catheter company had piano music that was so depressing. I could only bear it for so long and then I hung up to call again. Finally got through to someone at my cell provider and turns out all I needed to do was update the app. I was with the tech for just a minute after spending 20 on hold.

Today is my nephew’s birthday so we celebrated out in my backyard. I lasted a couple of hours before the heat got to me. I am so tired and because I was sitting, my ankle/foot is flared up. Going to be a while before it settles down before I am able to sleep. Veins are popping on my foot which isn’t a good sign. CRPS swells up really good. The Suicidal area on my ankle has flared up a few notches. My sister had me go downstairs to check on my mother. I wish I didn’t because now the pain is agony. Foot and ankle are screaming at me. And just like that I am in a suicidal spiral. The pain is causing me to feel so damn hopeless and I am trying to “ignore” it. I am trying to say it will pass and then I will be “fine”. But in this moment I wish I was dead. I just took my BT meds with Tylenol. Hopefully in an hour I will be feeling better.

I am listening to a song by Taylor Swift on repeat. I don’t know what it is about this song but I absolutely love it so much. The melody of the song just draws me in. As many times as I have heard this song I still do not know it word for word, yet. I am getting there with each repeat.

Chronic pain and worth

by Midnight Demon, posted in Chronic pain, chronic physical pain, CRPS