Age: 44.0
Sex: F
Vaccine: COVID19
Symptoms: Pain, Pain in extremity, Peripheral swelling, Sleep disorder, Ultrasound scan normal
Clinical narrative: Pt vaccine reaction Timeline: May 4  11:30am - 2nd Pfizer vaccine received.  6:30pm - Slight ankle pain with no event or accident. chalked up to turning 45.  9:30pm - Walking is more painful and I'm a little worried but again, turning 45. May 5 AM - Began the day with a now swollen ankle (tennis ball like on the outside), sore greater toe joint and I am pretty sure this is vaccine related. No other reason I can come up with. Too coincidental. Called my doctor and she said the vaccine is creating all kinds of strange reactions, but to watch it and if it gets worse come in.   PM - The day goes on and I'm not feeling horribly worse but am pretty concerned if it doesn't get better by tomorrow I'm going in. Walking is painful like nothing I've felt. Not injury pain just overwhelming pain. By bedtime (of course) the pain is constant and cannot get comfortable. My friend is helping me with ice and things and I slept between 11pm - 1am.  May 6 1-3am - Walking is now excruciating and I'm really worried now. Luckily Dad was up posting on the family page here and I messaged him that I was going to the ER as soon as my friend wakes up or 7am whichever comes first. In a loving and no BS way he tells me to wake her up now and go. This is not something to wait on. This is one of the few times he has given me direction after hearing my plan. I figured I should listen for once. Woke my friend up and off we go to the ER. 3:30am - Kiss my friend and tell her to go back to bed. This may take a while. Walk slowly into ER. Sloth like, painstakingly. She watches until I'm in the door. They check me in quickly with no waiting.  4:00am - I am led to ER room 9. Doctor on duty comes in and we assess. He asks and the nurse asks several times if I turned it or some kind of incident. I said no and gave him the vaccine timeline praying they keep an open mind and don't send me home. I kept saying I know this is strange and when they even touch my ankle now it's just awful.  4:30 - X-ray, blood draw (a lot). I'm sure they needed to check my BAC, drug screen, etc etc. 5:00am - X-ray is clean, no cracks or breaks. Blood tests are a little wonky. White cell count is high. My D-Dimer (test for possible blood clot) is 2x normal so they think blood clot and order the sonogram. She is on call so will be 30min before she gets here. 5:30am - Sonogram wheels in and she starts. She is tired and not very happy. First person to be a bit dry. She is a little rough and toward the end actually GRABBED my ankle and I screamed and nearly cried. She didn't apologize and was done shortly after. It felt like she was "wasting her time" and I prayed for her because I don't know what she's dealing with in her personal life. 5:45am - Sonogram is clean. ER doc comes in and we talk about next steps. He's called the ortho doc on call. He said he can pull some fluid from the swelling to see what we are looking at and send it to the lab to test. I said do it.  6:00am - The lidocaine usually burns, but this time I don?t even twitch because the pain is already terrible. It numbs part of the ankle so he can stick a needle in my now softball like ankle swelling. What he extracts is disgusting looking. He was hoping it was clear but it is not. Send the sample to the lab.They?ve given me an IV line and administered morphine. I don?t like that initial feeling. My whole body burns for a few seconds. It does help the pain so I deal. 7:00am - Shift change, so ER doc briefs the replacement and Ortho doc who is now in on things. Ortho doc immediately puts me in the OR schedule at 9:30am! He assures me this has no relation to the covid vaccine BUT he wants to be safe and clean the infection out if it indeed is an infection. We wait. 8:30am - I am prepped for surgery and wheeled up to the 2nd floor. I feel like this is not an infection but what do I know. Ortho doc wants those results before he cuts into me. Saved by the lab, there is no infection. Morphine has worn off by now and the surgery nurse doesn?t have the authority to administer. I said so I?m just going to sit here suffering? Over dramatic nurse shows her true colors. Time to wheel back down to the ER room 9 to get some pain relief.  9:00am - They now believe this is a reaction to the vaccine. I am admitted to the hospital and they find me a room.  10:00am - I?m in the room and so hungry, mostly thirsty. They start me on IV fluids and antibiotics. 10mg Prednisone. I guess they?re still not convinced it?s not an infection. I say better safe! At this point I can tell that my left foot, greater toe joint, is more painful than just shoe rubbing. I have aches and pains that are pretty regular, but now I cannot put a sheet or blanket on either of my feet. Throughout the day I am updating family and friends. Trying to rest and wrap my head around what?s happening. The ortho doc has scheduled another OR for 11:00 the next morning. He?s concerned about infection and saving my ankle joint from a lifetime of pain. There?s a possibility of gout as well. He goes above and beyond to talk to experts in the auto immune field and gout. Opening up my ankle would cause more pain, and if it?s not necessary they want to focus on treating this correctly. So I spend the day toughing it out with oxy every 4 hours. No food or drink after midnight. Midday - Second friend came to see me and brought my phone charger. I didn?t realize how tired the oxy was making me so we chatted a bit and then needed to nap. Due to hospital regulations, she was the only person who could come see me for the entirety of my stay. They want me to stay the night no matter what so I just hang out and watch Friends all day, messaging here and there. Napping and bored.  Overnight thru morning - About 10pm, the tech for the night, 2nd nurse, tells me I need to take a shower with the special antibacterial soaps. I hobble to the shower that he started for me. The shower actually felt good and relaxing. Just a little relief. The nurse on duty was super fun and sweet. Even at 3am she was in a good mood and we talked about Great Danes and her kids. By morning, I was so thirsty and hungry, but possible surgery prevents me from eating or drinking anything unless I?m taking a pain pill. May 7 9:00am - Dr. MD and Dr. OD come visit and several tests have come back from the lab. I can see results right away in a very cool app called One Chart. This is my new favorite app . Turns out the gout test is negative. They looked for crystals in the joint sample and no crystals were found. Also, final results of infection are negative. So the surgery is called off and they finish my IV antibiotic which was almost empty anyway. At this point my ankle is swelled up all around now and my left foot, greater toe joint is swelled up now. I tell the docs my right knee is starting to have pain and my right thumb. 20mg Prednisone and as the day goes, the pain lessens.  Later in the afternoon, they told me it was up to me when I wanted to leave. I could stay another night or head home with some new scripts. I was walking better and the pain seemed under control after not taking any pain meds all morning.  4:30pm - My friend came and picked me up. May 8 30mg Prednisone. 500mg Naproxen 2x daily. Saturday was good to be home. Waking up a couple times in the night with pain, but as the day goes on, it?s better. Swelling doesn?t go away, but the pain isn?t constant.   May 9 30mg Prednisone. 500mg Naproxen 2x daily. Feeling much better. Swelling still there, but the pain when lying in bed, walking or just sitting isn?t excruciating. Went to dinner at a friend's house for Mother?s Day.  May10 30mg Prednisone. 500mg Naproxen 2x daily. Slept all night till 7:30am. 8:30am - appointment with the Ortho Dr.. I told him my thumb and knee were worsening similar to my ankle shortly after my vaccine. I was hopeful to go back to work the next day.  May 11 20mg Prednisone. 500mg Naproxen 2x daily. Unfortunately, tapering off the prednisone made walking painful by the end of the day, I had regressed. the pain and swelling flare up.  May 12 Sleeping was pointless. I was up at 3am in pain. Swelling and horrible pain.   7:00am - 20mg Prednisone. 500mg Naproxen 2x daily. My right ankle, thumb and knee were twice as big again and my left foot was flaring up again only this time on the outside of the foot.  8:30am - I began by calling the Ortho doc since he was most familiar and following my case closely. I was waiting for a call back and getting scared they weren?t aware of the seriousness of the situation. 9:00am - Rheumatology called to schedule an appointment for Wednesday May 19, so one week away. I accepted the time slot and felt a bit hopeful. 9:30am - I had a call from an automated patient care robot who I informed I wasn?t improving or the same, but getting worse. A human called me back within 5 minutes and we started to figure out a plan. Dr. nurse called me back quickly and made a 3:00pm appointment.  1:00pm - Dr.  called me again. He spoke to the rheumatologist I was to see in a week. They suggested putting me back on a higher dose of prednisone and instructed me to take another 10mg tablet immediately. He said he was writing me a prescription for 40mg prednisone daily, calling it in today and to start tomorrow. Evening - Walking is still terrible and I just go to bed.  May 13 4:30am - Still waking up every two hours and at 4:30am in pain I give up and move to the couch. Ice, pillow and continued watching a sitcom again.  7:00am - The RX wasn?t filled yesterday so I take 4-10mg tablets to equal 40mg and I start calling the Dr again to make sure that gets filled today. Mornings are so painful.  3:00pm - Finally they push the RX through and my friend picks it up for me along with a few staples. As the day goes on I feel a little better. Stronger and less pain, but the swelling is still prevalent. 9:00pm - I go to bed and pray I sleep till 6.  May 14  3:00am - I wake up in pain. Walking makes me cry. Mornings are the worst. The swelling doesn?t seem to be increasing but the stiffness and constant ache in my ankle, knee, foot and thumb are impossible to ignore. Back to the couch for more sitcom. 7:00am - 40mg Prednisone. 500mg Naproxen 2x daily. Working at the dining table is painful and I try several feet up positions to switch around to.  Day through evening - Not much changes but it?s not getting worse. Standing for a short period of time seems like too much.  10:30pm - Bedtime and praying the morning is better.  May 15 4:30am - Woke in pain, hobbled to the couch, more sitcom. 7:00am - 40mg Prednisone. 500mg Naproxen 2x daily.  9:30am -Third friend picked me up to go get coffee and I borrowed some compression socks from her. They do make my joints feel more stable so I?m trying those out today and overnight. 9:30pm - Went to bed sore which gives me an impression the morning will be rough. May 16 5:00am - Woke in the worst pain since this all started. I would crawl to the bathroom but my right knee is too sore to put pressure on it as well.  6:00am - 40mg Prednisone. 500mg Naproxen 2x daily. I?m taking the steroid an hour early because I can?t stand the pain. My thumb is swollen the worst it has been. Pain in both feet, right ankle and right knee. And now my shoulders and neck are feeling sore. I?m not sure if this is muscle soreness or swelling starting to happen in this area now.  Noon - fatigue, nausea, full body aches. Overall gross feeling. Foggy brain and heavy eyelids.   3:45pm - trying as hard as possible to keep my feet up all day. The fear of not sleeping and waking up unable to walk without pain is overwhelming. Spending the day watching movies with my kids.  6:30pm - trying ibuprofen tonight. 800mg /8hrs. Naproxen doesn?t seem to be doing anything.  8:30pm - Going to bed.  11:30pm - Woke in pain as predicted. Slowly painstakingly hobble to the bathroom and back to bed.  May 17 3:00am - As predicted, terrible pain just sitting here. Walking is excruciating. I'm gonna have to go back in for sure. 5:30am - Assessing and making decisions.  Left foot swelling is down. The pain when walking feels like my foot is ripping in half. Top outside of my foot and greater toe joint feels like I?ve been stepped on by a horse.  Right foot and ankle swelling is down a bit. Feels like I?ve severely sprained several parts of it. All the little joints are struggling in my feet.  Right knee swelling is worse. The pain is still bad. Feels like stabbing above my kneecap and possibly dislocated. The right side also has a stabbing pain. Trying to walk is unbearable.  Right thumb is the worst it?s been yet. Swollen and painful to touch. Not sure if I will be able to work today since it?s my mouse hand. I can?t hold a pen correctly.   8:00am - Called the dr and left a message to help figure out a pain plan or I?m going to have to return to the ER. Waiting on call back.   10:45am - Dr. is prescribing me a higher dose non narcotic pain killer. Tramadol.  Also contacting the rheumatologist I?m seeing Wednesday. Not sure what to do for me until they evaluate me. Not much urgency in that department but he?s trying to push me through. 12:45pm - Dr. called and recommended going to the ER main campus. He is out of his element now and wants rheumatologist to get on this.  1:00 - at ER 1:30pm - blood draw then waiting.  3:30pm - Ortho team and Rheumatologist shows up. Tells me more of what I know. Ortho wants to aspirate my ankle again. This time it hurts bad. Great doctors though.   4:00pm - sounds like they?re admitting me.  5:24pm - waiting for someone to take me to a room. Staying until the pain is managed. Hopefully a day or two. My symptoms are very unusual and atypical is what I keep hearing. Looks like infection, but it?s in multiple joints. Multiple joints make them think of some sort of autoimmune disorder. My pain fluctuations are confusing to them. The prednisone should have taken the swelling down within the first few days. Two weeks later I?m back in the ER.  9:45pm - Made it to the room.  May 18 4:30am - Woke in pain and the swelling is still here. You would think that staying off my feet would help but it actually makes things worse it seems. My knee is extra puffy today. Thumb hasn?t gone down at all.  6:15am - Another blood draw. So many fluids have been taken out of me lately.  6:45am - Ortho team came in to check on me. No infection growing. They?re still betting on a rheumatological diagnosis.  10:45am - The swelling intensifies today. No prednisone so they can get accurate blood readings. Just gave me IV toradol which is an anti inflammatory and painkiller. Praying for some relief.  11:30am - Entire team of 8 Drs came to see me today. More and more confirming this is a response from my 2nd covid vaccine. I?m feeling even more confident they will have a plan for me soon. They're loving figuring this out! They're reporting everything and making sure everything is documented. They've not seen such crazy numbers in a blood sample as they have in mine. 2:00pm - Rheumatologist and his team of 3 came up with more testing. They?re going to aspirate my knee and ankle again. This time with a precise sonogram instrument. They?re also ordering an Echocardiogram to make sure my heart valves are healthy.  3:00pm - Another fat needle in my knee AND ankle. Pulled out some fluid that wasn?t blood. Sending it through one more time to test for infection.  5:00pm - Toradol is working for pain control. Also starting me on IV steroids to see if they can get the swelling down.  9:00pm - Feels like the swelling is going down. Will see how it is in the morning. I?m hopeful!! May 19 6:00am - Best sleep I?ve had in 2 weeks. The swelling is down quite a bit. Joint pain is still there but not near as bad.  7:30am - Sonogram scheduled to look at my heart valves at 2:00pm. Ekocardiogram. No food or drink until after.  8:00am - Internal medicine doc gave me a lot of information.  They still do not think it's an infection.  It?s possible I have an autoimmune disorder  It?s possible I have a virus in my heart and blood Most likely this is a reaction to the vaccine. My antibodies deposited in these few random joints and my immune system attacked.  My liver enzymes are high which is a sign of autoimmune disorder but they?re not confirming that yet.  I?m severely anemic which is another sign my body is fighting something.  My entire system is inflamed so that?s another concern.  10:30am - Echocardiogram went well. Just checking my heart to make sure no virus or infection there.  2:00pm - On the dot. Sonogram of my major organs went easily even though I hadn?t eaten and was hangry. 3:30pm - another dose of IV steroids and naproxen.  4:00pm - PT visited to see how I was moving. Having to use a walker to be mobile is quite humbling.  5:00pm - Head Attending Rheumatologist came in to discuss. They are being extra sure no infection because that could cause long term damage. The heart sonogram just makes sure my heart valves aren?t infected and spreading an infection in my blood. The liver enzymes are elevated but he said they are not alarmingly high. They think if I can get the swelling down. Pain managed and confirm there?s no infection I will go home tomorrow. I will most likely need a walker and shower bench in the beginning until I get stronger, swelling goes down and pain is minimal.  May 20 6:00am - Another pretty good nights sleep. I know they have a few test results they?re waiting on before sending me home. Hopefully that will be wrapped up today. I am achy this morning in those troubled joints so will take naproxen and see how the morning goes. Swelling seems a little better but it?s hard to tell this early.  7:25am - I?m feeling a lot more clear headed today and more confident about going home. I have a long road of recovery but I?m no stranger to that. 3rd friend brought me native coffee this morning. Perks of your best friend working in the same hospital you?re in. And she brought me clean clothes so she?s my hero of the day. My energy level is better today.   1:00pm - Going home today looks less likely by the conversations with the team here at UNMC. Pray they find what they?re looking for and come up with a solid plan to treat me.  2:45pm - EKG to establish a base line.  3:00pm - new IV port. Steroid IV  4:15pm - Finally get new IV after two attempts. I?m getting really sore without the steroids.  4:45pm - New culture swabs to test for more difficult to diagnose infections. They?ve almost certainly ruled out an autoimmune disorder. That?s huge! Next is rule out infection 237%. After that they call it reactive arthritis which is tough to pinpoint why it?s happening but they will treat it as best they can.  5:00pm - Finally get the steroids. Gonna take a minute to feel better.  9:00pm - Started to feel better and lost the constant dull ache in all the problem joints. My knee feels extra sore tonight so trying to find a comfortable position is tough.  May 21 5:45am - Took naproxen 6:30am - Swelling is down more this morning. Still painful walking but not nearly as bad. Praying they have a solution today. 8:00am - Internal Med Dr visited with a sneak peek at their tentative plan. They won?t have the last infection test done for 3 days but they think I should be ready to go home today with a solid medication plan of steroids and naproxen. I will be monitored closely at home and have a plan of action if I have a flare up. Also follow up appointments will be scheduled out to measure progress and communicate with the medical team here. I feel truly blessed to have this team working for a solution to this unique illness. ***also my liver enzymes are back to normal and inflammatory markers are reducing. *** 8:45am - Dr. visited. Basic same story. He said the cultures from yesterday are negative but they want them to ?cook? for a couple more days.  10:30am - Infection team visits with their plan to wait for cultures to grow and treat with antibiotics if needed.  11:30am - Internal Med team visits with the same info. They?d like to get me home today. Waiting for the Rheumatology team to confirm their plan for steroid treatment when I am home.  12:30pm - I put pants on.  1:15pm - Dr. in Rheumatology stopped in and basically repeated the previous team?s comments.  3:15pm - IV steroid and confirmed I?m being discharged today.  3:45pm - Dr. Attending Rheumatologist came to explain what they know and what they don?t know. I don?t have an autoimmune disorder. I don?t have an infection that would need antibiotics. What I have is reactive arthritis which they think is responding to ?a virus.? They will not confirm or deny the COVID-19 vaccine reaction, but several think it?s covid related. Time will tell and I am on a slow road to recovery. Many follow up visits and possibly a definite answer some day.  6:00pm - arrived at home and felt so good to be there.  May 22-23 Spent the weekend taking it easy. Had several helpers and food drop offs. Each day is less swelling and better range of motion. I?ll update every couple days just to keep a log of recovery.  May 25 6:00am - I don?t want to jinx it but the swelling in my knee is down even more this morning. Left foot is almost pain free. Right ankle looks really good considering. Staying off my feet as much as possible seems to be working plus the steroids. Feeling encouraged.  June 2 2:00pm - Followup appointment with Rheumatologist Dr. and the attending. They?re changing my prednisone to 10mg/day for the next couple of months. I go back in August as long as everything keeps getting better and I don?t have any flare ups. June 8 Today has been the best mobility I have had in a very long time. Swelling is down alot. Everyday seems to be better.  June 18 Had the best day. Less pain and swelling. I was able to walk normally.  June 22 Interesting new swelling and pain in my right palm. Sent pictures to Dr. and talked to him on the phone Friday. Staying on 10mg prednisone for now.  June 28 All the affected joints are just sore and hard to move. My right thumb is significantly swollen. And right palm has some swelling.