Patient Comments: Rheumatic Fever - Experience

Please describe your experience with rheumatic fever.

Comment from: Toni, 19-24 Female (Patient) Published: June 04

I was diagnosed with rheumatic fever (RF) in 2005, after months of suffering an infection which I was repeatedly told by general physicians, was viral. It wasn"t. My development went right back to that of a newborn baby. I lost the ability to talk, walk, sit or feed myself. I also developed Sydenham"s chorea or St Vitus' dance (uncontrollable muscle movements/spasms) throughout my entire body that I was unaware that I was doing. Being told repeatedly that it was simply a virus and I was fine, I was sent into school and repeatedly sent home until I was bed ridden and eventually hospitalized. I have mitral valve regurgitation and pulmonary valve stenosis as well as lasting joint pain. I am wondering about any lasting effects of RF as I have current health issues which I believe could be attributed to the rheumatic fever infection but I have found no information online or medical texts.

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Comment from: Gurung, 19-24 Male (Patient) Published: May 22

I was 11-12 when one of my leg begin to pain while walking. So, I was getting injections, later I started having medication tablets. Around the age of 16 I stopped the medication, thinking I was fine about which there was misunderstanding between my parent and the doctor. Two and half years later I got the rheumatic fever again, this time a lot worse. I got pain starting from neck then legs then arms, literally every joint in my body. It was a horrible feeling. I got hospitalized for 2 months. I have problems with my two valves. I go for test once every year. Physically am ok, I am active person I do swimming, go to the gym, play football and basketball. But I try not to overdo it.

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Comment from: Raye, 55-64 Female (Patient) Published: October 15

I was 4 when I first got rheumatic fever. I lay on a stretcher in my parents' room for months, unable to walk or move. At times I had to be turned over. I suffered three times up to the age of 12 and I had glandular fever a few times as well. Each time I couldn't walk and the last time I had to learn to walk again. I was hospitalized for a lot of those years. The doctor put me on long term antibiotic penicillin until I ended up with urticaria and stopped (swelling of my whole body and a rash). I was told that I had a heart murmur. Currently I am about to have an echo heart test as I am always tired. I have developed an extremely painful thumb and triggering in both thumbs. I am yet to have blood tests for the hand pain. I get swollen ankles.

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Comment from: Dfreezy1907, 55-64 Female (Patient) Published: May 20

It all began in late April 2013 when a painful cyst emerged overnight on the surface of my index finger at the first joint. I couldn't bend it and it was painful to the touch. I recall a small lump under the skin the previous week. It scared me enough to go to the doctor the next day. He said he'd never seen a cyst in that location, called it a bacterial infection and prescribed Bactrim. Two days later, I woke up at 2 a.m. with pain on the top of both knees. I applied ice and managed to get back to sleep. The next morning the pain had subsided in my right knee, but the left one was still sore. I went about my activities, thinking perhaps it was the weather. The following day it got worse – more swollen and I couldn't bend it. The next day, I could hardly walk and developed a low fever. I went to the ER at 7 p.m.; where they ran blood and urine tests, but said results wouldn't be conclusive because I was already on antibiotics. Later, the doctor called to tell me I might have infectious endocarditis because I had been to the dentist recently. My doctor ordered an X-ray and blood cultures and sent me to a cardiologist the same day. There, I received an EKG and ultrasound of the heart. More blood and urine was taken and Augmentin was prescribed. The next day I went back to my PCP with knee pain, which had spread to behind the knee and was also in my left wrist and right elbow. They also noticed a rash on my arms and chest, and told me to stop the Bactrim, thinking it might be an allergic reaction. A few days later at my cardiologist appointment, I was told I had a high level of strep in my bloodstream along with a low white blood cell count and decreased kidney function. Because of all the other symptoms, he called it rheumatic fever. He said it is rare in adults, but that the good news is that it hasn't affected my heart valves. I am recuperating with low energy.

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Comment from: honeydew, 55-64 Female Published: August 05

I was 2 years old the first time I got the fever. I was in the hospital for 5 days and couldn't walk. They didn't know what happened. The second time I got the fever I was 9 years old. Then they knew. First time my right leg gave out the 2nd time my left leg gave out and I had to stay flat on my back for 4 months, I couldn't even get up to use the restroom. They told me that it can occur every 7 years and if I didn't get it at the age of 16 I wouldn't get it again. I will be 64 this year and at the moment every joint in my hurts. I was lucky I did not get any problem with my heart.

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Rheumatic Fever - Symptoms Question: What were the symptoms of your rheumatic fever?
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