At the end of my MRI Results post, I mentioned that I would be going forward with a cortisone injection in my right sacroiliac (SI) joint… then I kind of disappeared! Oops! I didn’t mean to disappear, I swear. However, part of my disappearing act was actually due directly to the injection.
I got the injection on Friday, January 27th, at 1:30pm. Yes, the timing matters.
Injection Day (Friday)
I was to be NPO (don’t actually know what the acronym stands for, but it means I can’t have anything at all by mouth… not even water) for 4 hours before the procedure, since I elected to have the sedative. Since my stomach can get finicky, I wanted to give myself at least 5 hours to ensure it was completely empty. Then, I wanted to make sure I had plenty of time to get some more sleep… so I decided to wake up at 6am, eat then go back to bed. My plan was to sleep until about 11 (we needed to leave the house at noon to get to the procedure facility) so I wouldn’t be awake and burning calories or getting thirsty. Unfortunately, my body woke me up at 9:30am, but I did my best impersonation of a vegetable until 11am 😛 (Meaning I hung out in bed playing games on my phone.) By the time we got there, I was extremely thirsty, tired still, anxious, and dizzy from the lack of food and water. Dysautonomia gets really angry at you when you get dehydrated.
We got there and the whole thing went relatively quickly, actually. I was taken to a room, that was much larger than it really needed to be, to change into my lovely gown and have the IV started.
Thankfully, before starting the IV, they gave me a lidocaine shot. Usually, I despise the IVs in the hand because they hurt so much, but I never felt this one! That was so surprising because lidocaine can be hit or miss for me, though it almost always at least dulls things. However, I think a little of the lidocaine got into the vein my IV went into because I got extremely dizzy when they started running the fluids! I asked Dan to read me the IV bag, and they actually were giving me lactated ringers (saline with some extra electrolytes) which are supposed to be awesome for dysautonomia patients. I just wish it hadn’t made me so dizzy. I had to request a wheelchair to move to the procedure room due to my dizziness. Dan moved to the waiting room when I was taken back to the procedure room.
I got up onto the table, and they exposed me back and pulled my underwear down a bit too (so they could get access to the injection site, completely normal based on pictures I’d seen before the procedure). Then they cleaned my back thoroughly with a soap that felt ice cold because it had a high alcohol content (and alcohol evaporates quickly, making you cold) even though it was room temperature. While they were cleaning my back, the tech put the sedative into my IV and asked if I could feel it when I should have been able to feel it. I couldn’t. The sedative was supposed to make me sleepy/loopy but not cause me to forget things nor knock me out. Since I couldn’t feel it, he gave me a tiny bit more…
Then I woke up in the recovery room. I way overreacted to the sedative and passed out cold. I also woke up incredibly nauseous and disoriented. I felt like I hadn’t slept in weeks except for a two hour nap I’d just woken up from. That’s how hard I had to fight against the sedative to stay awake. The nausea was also something else. Luckily, I had brought my prescription Zofran with me, so I took it as soon as I got to the car. I did have a non-diet (not low FODMAP) grape juice and ginger ale because my stomach was killing me and I was thirsty. I was so tired, however, I didn’t finish either of them completely and didn’t actually eat anything until I got home. Dan got me propped up on the couch with a bunch of pillows and a blanket, then got me some food. He got out his work laptop and started working from home right next to me, and I was messing around on my phone. Then at about five he asked me a question and I jumped sky high because I had lost the battle against the sedative and fallen asleep for about an hour. I hadn’t moved at all, however, so Dan had no idea I was asleep.
Then, Dan’s brother (my brother-in-law) had chosen that weekend to come to town for a small visit, and we hadn’t seen him in a year. So we figured out what I could eat at the restaurant we were going to, gave me ibuprofen (I hadn’t had my Mobic for more than 24 hours, so it was safe to take a different NSAID) and headed out. I used my wheelchair and accidentally pushed through pain to stay for two hours. I really shouldn’t have done that. I was very sore and slowly worked my way to bed as soon as we got home (slowly because there are two flights of stairs, one from the front door into the house and then one up to the bedrooms).
The Day After (Saturday)
The next day, I woke up in some pain, but it wasn’t atrocious. We got dressed and headed over to my father-in-law’s house to visit with my brother-in-law. I had really wanted to stay home, but I missed my BIL too, and didn’t want to mess up Dan’s visiting time, so off we went. Unfortunately, we stayed way longer than I should have – we were there for nearly four hours! The chairs we spent most of that time on are comfortable for short visits, but not for four hours. I was essentially either sitting with little back support (more in the middle of the chair) or on a strip of wood so my back could be fully supported. By the time I told Dan I needed to go, my pain levels were increasing exponentially by the minute. When we got home, I “collapsed” (very carefully) onto the couch and burst into tears.
They had warned me that the shot could aggravate things for up to a week before it started working, but most of that pain was my own fault for not asserting my need to be flat on my back. The pain was so intense, I was debating having Dan take me to the ER for pain management. I figured, if I couldn’t get to sleep, then I would make him take me. Luckily, I was able to sleep after we used ice packs for about three hours (on for about 20-30 minutes, then off until I didn’t feel frost bitten anymore lol) and I took some Tylenol (I had taken my Mobic so I wasn’t allowed to have an NSAID).
Injection +2 (Sunday)
The next day, I woke up with a lot of pain in my back/SI joint. It wasn’t as bad as the night before, but it wasn’t good. Luckily, it was a Sunday, so Dan was home. We stayed home all day, and I actually stayed on the couch all day. I was mostly horizontal, but would sit up to eat and such. By late afternoon, I was able to sit up for several hours (fully supported in a nest of pillows of course). As I stayed on the couch, pain in my hip joints (not SI joint) increased, as well as pain in my knees. I realized the pain was primarily due to inactivity, atrophy (it happens extremely quickly with my illnesses), and stiffness. Because I was able to sit for a while, I decided to do some “laps” of my downstairs… it’s about 20 feet from my couch to kitchen, and I walked from the couch to the kitchen and back about four times. Thankfully, the walking didn’t increase the pain in my SI joint much and it did relieve some of the pain in my hips and knees! I was so grateful for the slight pain relief. Then I went back to lying down and we went to bed relatively early because I was exhausted from healing.
The Rest of the Week After Injection
I had physical therapy on Monday morning, and when I stood up from the bench in the waiting area, Joleen grimaced! It was obscenely obvious that I was in a lot of pain and things weren’t working quite right (I was limping and struggled to get up from the bench, I think I also made a face). She examined me, and my usually tight muscles were extremely tight (more so than she’d ever felt them)… like, “abs of steel” would have been accurate, and not in the usual colloquial usage either. All of the muscles in my entire trunk were pretty much rock hard, with the muscles in my lower abdomen – especially the psoas – and my back being the worst ones. It hurt too much for her to really work on the abdominal muscles, but she was able to do a little work on my ribcage and upper back. She also examined the injection area and my SI joint. I did have a little swelling around my SI joint and lumbar spine, which she said was completely normal. Thankfully, she agreed that my bruising was also completely normal! She sent me home still in pain, but hopeful! With everything being normal, she cleared me to begin doing my super basic Pilates exercises again: pelvic tilts, supine marching, sitting/bouncing on my exercise ball, and all of my breathing exercises. I wasn’t able to start Monday night, as all the poking flared up the pain, but I started first thing Tuesday.
Sadly, it did take me almost the entire week to heal and stop being in excruciating pain. However, by Friday, my pain was pretty much non-existent! And, by the weekend, it was gone completely! Well, the pain in my right SI joint. Now that the excruciating pain in my right SI joint is gone, I am realizing how much pain my left SI joint and lumbar spine are actually causing me. I also have to be careful about doing too much because my muscles fatigue easily, after all the inactivity since October, so I can very easily cause myself pain. The Pilates is helping, for sure, and I am suddenly able to do things I wasn’t even able to do before October! I had pretty much resigned myself to the idea of living with constant and excruciating pain in my back. I was not expecting a miracle! This honestly feels like a miracle: I can get in and out of cars without pain, I can pet my kitties without having Dan have to pick them up for me, I can easily put on my own socks, I can pick up my kitties, and I can stand in the kitchen and make appetizers (Super Bowl Sunday)!!! I am petrified that this isn’t going to last and I’ll have to keep getting the injections, but at least we know it worked!
Unfortunately, I think I may need one on my left SI joint as well, because the pain is pretty bad in that one now. Obviously, if I get any other injections, I will not be using the sedative (maybe I can just get them to give me a basic anti-anxiety medication like Ativan or Xanax).
Overall, the severe pain after the injection was well worth the relief I am now experiencing! I can’t wait for my next physical therapy session so we can start building up my strength and work towards a more permanent pain relief!