At this point, I had take 800mg of Ibuprofen and 650mg of Tylenol. I had tried stretching, massaging those muscles pretty hard, and laying with a hot pack. I ended up laying in the bath for about an hour with no significant improvement. i had told my mom earlier that I probably couldn't do leg day but that I would plan to go to the gym and walk on the treadmill because I really wanted to stay committed to all of this. By about 5:45, I could barely walk and I couldn't straighten my legs. I decided I wouldn't be able to work so I called in. My mom responded to my texts about 6:!5 or 6:30 and by then I was SO miserable. Between the muscle tightness and the flare up of my CRPS I was in the worst pain I had ever been in. I even asked my mom if she would stay home from work and spend the day with me. She said she had to go into the office for the morning and then she would be over. In the meantime, I put a call into my pain doctor for suggestions. By 8:30 or so, the flare up had significantly reduced but the pain in my leg muscles was WAY worse. I finally asked my mom if my dad would come over while I waited for her to be able to leave work. My dad got to our house and I told him that I couldn't stand the pain any longer and that I needed to go in. Everyone that knows me knows that I handle pain really well. It takes a lot to have me completely miserable and I rarely ask to be taken to the doctor for anything with pain. I was desperate for relief.at that point. When my dad got to our house, we got in the car and headed to the Urgency Room. Anytime I had gone to the Urgency Room I had always gotten good care so I felt okay about going there. I headed in and explained what was going on. I let him know where the pain was but I also told him it didn't really make sense because I hadn't worked out my legs at all. I know that when you do core workouts you engage your leg muscles some but this was different. I had "normal" muscle soreness in my arms and core which are the muscles I actually worked out. The doctor there listened to my heart and lungs, touched my back, and then asked me to stand up which sent me into tears. I had honestly been crying most of the morning since about 2:30 am. I had told him that on top of the muscle pain in my legs, I was having a flare up of my CRPS but that I also had some flank pain. He told me that it wasn't from my spine and that it was normal muscle soreness from working out. He prescribed me a muscle relaxer and sent me on my way. He didn't run urine sample, draw blood, treat my pain, nothing. He sent me home. It is frustrating having a chronic illness, especially chronic pain because as soon as people hear that I have it, they immediately think I am there for one reason... pain medication. I don't use it regularly for treatment of my pain and I don't expect it when I go places except for when I have acute pain that is excruciating. I know that had I been a patient that didn't have chronic pain, he would have likely given me something to treat my pain. But he just sent me on my way.
I got home and was in so much pain. I couldn't get comfortable no matter how I sat or laid. It was nearly impossible to walk and I was crying all the time. I took a muscle relaxer which did nothing and waited. My mom had gotten there and we were trying to brainstorm ideas. In the meantime, I went to use the restroom and when I stood up, I noticed my urine was red-ish/brown. I ended up calling a coworker of mine at the clinic and asking her if she would check with our wonderful chiropractor to see if she would see me. She graciously offered to see me over her lunch so my mom and I headed to the clinic. When I got there all my coworkers were so sweet. I decided to leave a urine sample to be run so that I could see what was going on with that. The girls ran it and it came back filled with blood. The chiropractor came in and saw me and the girls brought my urine results to the provider I support at the clinic who is an incredible urogynecologist. She came over and saw me then as well. We brainstormed ideas, I let them both know what I had going on, and they agreed it would be best for me to be seen in the ER. The idea of a possible kidney infection was put out there but the chiropractor also said it maybe was something called Rhabdomyolysis. She said that is was uncommon and that mine definitely wasn't a textbook case but that it may not hurt to get it checked out. If we drew my blood at the clinic though, we wouldn't have results until Monday. So they agreed it would be best to be seen at the ER and my provider called over to the ER to let them know I was coming and to let them know what workups she wanted done on me. When I got there they saw me pretty much right away. I left a urine which had gotten even darker and they drew blood. They told me the urine came back with blood and protein in it but that it didn't show signs of an infection. My kidney function test came back normal but that they were wating for my blood test that looked for my CPK or CK level which is what they look for in the diagnosis of Rhabdomyolysis (Rhabdo). The CK level is an enzyme that is released when muscles are damaged. It is normal to have some after working out but if there is too much, it can clog the kidneys and cause serious kidney damage or even kidney failure. In the meantime, all I had gotten to help my horrible pain was 1000mg of Tylenol and another muscle relaxer... needless to say, I was still miserable. A short time later, the ER doctor came in to go over test results for my CK levels. She said that a normal person may have a CK level of anywhere from 0-100 at anytime. An average person who just worked out may have a level of 300-500 and a person who just ran a marathon may have a level around 1000. My CK levels came back at 36,000 which meant I had severe muscle damage and my kidneys were at a significant risk of being damaged or even sent into kidney failure. They diagnosed me with Rhabdo immediately. The treatment from Rhabdo is basically inpatient IV fluids for a couple days. They have to continuously flush your kidneys out to help prevent them from being clogged and damaged. They do this until your CK levels drop. I was admitted with the hopes of being out by Sunday.
They got an IV and began fluids immediately. I got my first bag of 1000 mL of fluid infused in just 15 minutes. As soon as I had the diagnosis of Rhabod, the ER doctor said it would be appropriate to need pain meds. I was baffled. I have been in this horrible pain the entire time but now there was a "valid reason" to treat it. I had an INCREDIBLE ER nurse who had a child who has chronic pain. She advocated for me with the doctor and got me meds right away. She said she couldn't believe that they treat women who come in with menstrual cramps with narcotics but because I have chronic pain, they refused to treat my acute pain until I had a diagnosis that "warranted it". She was so great to me though which made things so much better. I was admitted and sent up to the 2nd floor where I got settled in. I was on continuous fluids and pain meds the whole time I was admitted. I saw a hospitalist and nephrologist and every morning they would check my CK levels. I was told it would have to be below 10,000 before I could be discharged. My levels on Saturday actually went up to just under 45,000, by Sunday they decreased to 31,000, Monday they were are 26,800 and then Tuesday they were at 12,011. The nephrologist and hospitalist agreed to let me go home on Tuesday as long as I promised to drink A TON of water. I was SO happy to be leaving. I got incredible care there but was ready to be home with Paul and our dogs!
In the first day of being admitted and on constant fluids I gained SIX POUNDS of water weight. I felt so incredibly bloated. I was getting 250 mL of fluid an hour. Through the span of my 4 days in the hospital I received just shy of 20,000 mL of fluid!
My legs are still incredibly painful. I had such severe muscle damage that the doctor's said could take a couple weeks to heal. I still can't straighten my legs yet and am still needing pain medicine pretty regularly. I was so fortunate to have a lot of family and friends visit me while I was in the hospital. It made the time go much quicker and it kept me sane! The love and support I have gotten has been unreal and so appreciated. The biggest concern for the doctors and for us is why this happened. The people that do get it typically work out REALLY hard but I did not and I didn't even work out my legs. My mom did the same workout and is fine. We don't know if it is tied to my CRPS but they do think it is a good possibility. Because we don't know what happened I will be seeing a neurologist to discuss having a muscle biopsy done to check for a rare form of Muscular Dystrophy which does have a tendency to cause this. It will also check for some other genetic/autoimmune things. I will also see a Rheumatologist to discuss the autoimmune possibilities for me getting Rhabo. In the meantime, I will have a follow up with my family doctor on Friday to discuss pain management while my muscles heal, plans for exercise going forward, and her thoughts on why this happened along with her recommendations.
I did try to work today but only made it about 4.5 hours before I had to head home because of pain and exhaustion. I am anxious to begin feeling better and for getting back into my routine.
I am BEYOND grateful for Paul who helped me SO much, both at the hospital and at home, and my mom who was there every step of the way.