Hello all. I'm the father of an 11 year old boy, Patrick, who has CF. I'm desperately looking for any help or ideas from people who have come across similar symptoms described below.
Patrick is a very active boy and fortunately his lungs and lung function tests are still in good shape.
However he is currently experiencing severe pain in many of his joints. In particular his back is bad (along the spine). He also has pain in his ankles, knees, and shoulders though not as bad as his back and can only walk 10 yards before he has to lie down due to the pain. He has had these symptoms for over a week without any sign of them abating. He has been on prednislone, naproxen & declofenac but so far these have not helped. There are no obvious signs of swelling at his joints.
Other symptoms include:
* burning sensation on the skin of his face, which comes and goes
* a red 'patch' or rash on his elbows and shoulders which comes and goes
* After the 5th day of symptoms, Patrick's condition suddenly got worse with a severe and sudden increase in pain (this came about 30 minutes after eating a large dinner). At the same time his pain increased, red patches flared up immediately on his elbows, shoulder and the top of his thigh. After about 45 minutes the pain and red patches calmed down. Then Patrick was physically sick, which triggered an immediate increase in pain and also the red patches immediately flared up. The pain and patches subsided again after 30 minutes.
His spine is very sensitive to even the gentlest of touches.
So far, the doctors have been unable to find out what is the problem. They were surprised the anti inflammatories and steroids have had no effect as I think they suspected Arthropy, even though his lungs are in good shape (also no sign of a cough or wheeze).
I would be very grateful for any of your ideas regarding what might be causing the above especially any comments from those of you unlucky enough to have experienced similar symptoms.
Thanks and regards
Sean
PS This is a great forum that I accidentally stumbled across.
Patrick is a very active boy and fortunately his lungs and lung function tests are still in good shape.
However he is currently experiencing severe pain in many of his joints. In particular his back is bad (along the spine). He also has pain in his ankles, knees, and shoulders though not as bad as his back and can only walk 10 yards before he has to lie down due to the pain. He has had these symptoms for over a week without any sign of them abating. He has been on prednislone, naproxen & declofenac but so far these have not helped. There are no obvious signs of swelling at his joints.
Other symptoms include:
* burning sensation on the skin of his face, which comes and goes
* a red 'patch' or rash on his elbows and shoulders which comes and goes
* After the 5th day of symptoms, Patrick's condition suddenly got worse with a severe and sudden increase in pain (this came about 30 minutes after eating a large dinner). At the same time his pain increased, red patches flared up immediately on his elbows, shoulder and the top of his thigh. After about 45 minutes the pain and red patches calmed down. Then Patrick was physically sick, which triggered an immediate increase in pain and also the red patches immediately flared up. The pain and patches subsided again after 30 minutes.
His spine is very sensitive to even the gentlest of touches.
So far, the doctors have been unable to find out what is the problem. They were surprised the anti inflammatories and steroids have had no effect as I think they suspected Arthropy, even though his lungs are in good shape (also no sign of a cough or wheeze).
I would be very grateful for any of your ideas regarding what might be causing the above especially any comments from those of you unlucky enough to have experienced similar symptoms.
Thanks and regards
Sean
PS This is a great forum that I accidentally stumbled across.