Patient Comments: Rheumatic Fever - Experience

Question:

Please describe your experience with rheumatic fever. Submit Your Comment

Comment from: CaseyT, 65-74 Male (Patient) Published: September 25

My relationship with rheumatic fever lasted between the ages of 2 and 10, according to my parents and my best recollection. This goes back to 1952-1959. I recall the arthritic pain and high fevers, plus lengthy hospital stays, lots of blood work, penicillin, and rest. However, I was able to live a healthy life, with plenty of sports activity and no tell-tale signs until recently. Some small amount of valve leakage was detected. Swollen feet and joint pain is recurring. I am active at 67.

Comment from: Stephany Perry, 45-54 Female (Patient) Published: August 03

I was diagnosed with rheumatic fever at age 10 in 1971. I spent 3 months in the hospital in. I saw the same doctor for the next 20 plus years. He did tell me that this can cause problems later on in life. I am 54 now. My heart is good, but I have early stages of emphysema, degenerative disc disease, a fancy term for arthritis. I have had neck fusion, spine fusion all with hardware. Last on the list is invasive ductal carcinoma, early stage breast cancer. Thank goodness the doctor operated on me and removed it all. I am ok.

Comment from: amenhotep, 65-74 Male (Patient) Published: April 25

I was correctly diagnosed with rheumatic fever in 1952 when I was 5 years old. I was incorrectly diagnosed as requiring corrective shoes prior to that. It's my understanding that diagnosis for rheumatic fever was more problematic then than it is now. What I remember was high fevers, weakness and knee joint pain. Treatment was started with sulfa medication, then weekly penicillin injections, then oral penicillin for several years after that. My parents were told not to let me participate in sports, and I did not until age 10. I developed a mild heart murmur. I was fortunate that the murmur was mild and became virtually undetectable later while a teenager. Because high fever infections in childhood often affect bone development and growth, my adult height is only 5 ft 6 in, while both of my younger brothers are 5 ft 10 in. Fortunately, that never bothered me! For years after initial diagnosis I would occasionally experience rheumatic pains in both knees, but that ceased in late adolescence. As an adult all my dentists have insisted on oral ampicillin prophylaxis one hour prior to any dental procedure, as bacteria released during the procedure can affect heart valves in patients with a history of rheumatic fever. My current physician says it is no longer required, but my dentist continues to insist on it, so I do. I was told early on that strep throat infections were dangerous for me because they could cause or re-activate rheumatic fever, so I have always been careful in that regard. I did have a bad strep throat infection in my late twenties, but I sought medical treatment quickly and it did not cause a problem. I am 68 now and in good health. I'm grateful I suffered no long-term or recurrent health problems from my childhood illness.

Comment from: Robbie, 65-74 Female (Patient) Published: January 20

I was diagnosed with rheumatic fever 1964. Treatment was 4 dissolving aspirin 4 times a day. No antibiotics were given and was advised bed rest for 6 months and outpatient appointments monthly to check blood levels. I got mitral valve problem and murmur, and I attend consultant once a year. I had 3 children no problems. Now though, I have been having multiple joint pain for past year and wonder if this is result of my illness all those years ago. The general physician is not particularly helpful.

Comment from: Thefrustratedone, 45-54 Female (Patient) Published: June 16

I was just diagnosed with rheumatic fever. I had several issues for several months and the doctors never ran a strep test. I had an itchy rash, stomach issues, night sweats, and I could hardly walk on two separate occasions. I had severe back pain and hip pain. I had neck pain and popping for 2 full months. The doctor sent me to physical therapy for my neck for 5 sessions. No one ran a step test. I was told it was arthritis and a virus. Finally I got a red, very painful, swollen foot. They thought it was gout. Three rounds of bloodwork and everything normal. I was so miserable. The next day, I got the erythema marginatum rash. Finally I got diagnosed and got help. No previous history of rheumatic fever. I am hoping I don't get rheumatic heart disease. I am a 46 year old female.

Comment from: hf, 0-2 Male (Caregiver) Published: April 19

Rheumatic fever is a nasty fever.

Comment from: Nursedeb, 55-64 Female (Patient) Published: December 30

I had rheumatic fever when I was seven years old. It was diagnosed because my left ankle became so painful that I couldn't stand on it. I also remember feeling like it was very difficult to breathe; like there was something very heavy sitting on my chest. I spent five days in the hospital on high doses of aspirin and penicillin. I was not allowed to walk for four months and had to be carried to the bathroom. I took penicillin until I was eighteen. I was supposed to take it to age twenty five but decided to stop because it was tearing up my stomach. I am now sixty and have fibromyalgia. I consider this to be the legacy of having had rheumatic fever. I also have severe digestive issues, diagnosed as GERD, corkscrew esophagus, and nutcracker esophagus. I also have central sleep apnea, which requires me to sleep with a CPAP. I know there was neurological involvement and mitral valve prolapse. I stay active and do as much as I can in spite of the chronic pain.

Comment from: GB, 65-74 Male (Patient) Published: December 16

I was 7 when my right knee stopped functioning. I was hospitalized for 2 weeks and had penicillin shots. Thing got better, until at age 12 I was diagnosed with rheumatic fever again with more severe symptoms. I was prescribed with antibiotic and my tonsils removed, which was infected to the size of golf ball. Eventually I became okay, but I ended up with excess hearing loss, which since then got worse on yearly basis. I have paid the price of my loss of hearing all my life, because I was not deaf 100 percent. My left ear has 80 percent loss and right around 50 percent loss, where people humiliate and discriminate me, and label me as a stupid person, due to my lack of hearing. The best hearing aid does not help me either. I have lost all high frequency pitches! I am 65 now, but I had a terrible life, as normal people don't understand what it is like when a person loses hearing, and how this disability can affect the person the entire life!

Comment from: Sharon, 55-64 Female (Patient) Published: November 14

I was diagnosed with rheumatic fever in 1966, when I was 12, after having strep throat twice in 6 weeks' time. I was on penicillin therapy for the 1st ten days of every month for years. My physical activity was restricted for years by my doctor as well. I was not allowed to work up a sweat. When my 2 sons were born, I was watched very closely and when I had surgeries, I was placed on antibiotics beforehand. I still tell doctors that I had rheumatic fever as a child and that I am supposed to take antibiotics whenever I get an infection. Nowadays with the doctors' reluctance to give prescriptions for infections, I wonder if the protocol for rheumatic fever patients has changed. I have developed arthritis of the neck, shoulder, and spine and I wonder if it is rheumatic fever related.

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.

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.

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.

Comment from: Margie, 65-74 Female (Patient) Published: August 08

I was 8 years old (1953), and I don't remember much other than not being able to move any part of my body. Doctors suggested polio, yet another doctor said rheumatic fever. I was not allowed to walk for one and one half years. My heart was monitored throughout my teen years, I was not allowed to play any sports. My grandmother was a nurse and she was my care giver. As I grew older the symptoms subsided, and since the birth of my first born at 20 years old, I have lead a relatively normal active life. I am 69, and the symptoms have returned, and I have been diagnosed with rheumatoid arthritis.

Comment from: Dulcie Mills, 45-54 Female (Patient) Published: June 30

When I was 8 years old I had golden staph pneumonia, rheumatic fever and a heart murmur. The doctor said that the rheumatic fever went all around my body first then my heart last. Because that happened my heart was not as damaged and I had a relapse with pneumonia, another heart murmur and rheumatic fever when I was 12 years. Now my joints pain all of the time and the doctors say this is not from the rheumatism but I believe it must have done something to my body to save my heart.

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.

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.

Comment from: Madusanka, 3-6 Male (Patient) Published: July 09

I was suffering from rheumatic fever when i was 3 years old. Now I'm 21 years old. At that time doctors had asked my mother to inject pencilin for 18 years. Since getting that injection was very painful, my mother had given up that after giving it only for 3 years. But still i can't see any effect on that. But i want to know whether there can be any effect on that in future.

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