Is this a CF issue?

mysticrose · Dec 14, 2011

Wierd question time. Is joint pain in a slow growing 13 yr old part of CF?

My DD with CF for almost a year now has been having random joint pain. Her knee has swelled up about twice it's original size twice. This last time she was not able to put any weight on it at all.Before this happened her wrist was hurting too.I have taken her to the pediatrician, who sent us to the Orthopedic clinic.They claimed she has Superior Plicas Syndrom (SP) basically she has a fluid sac above the knee that can cause it to swell. Over the summer it would become inflamed but she could manage with it. 
Last week she couldn't bear any weight on her leg so I took her back to the Ped. Before all this happened with her knee her hips were hurting her as well. We have ruled out injury, infection and apparently the blood test for arthritis came back negative as well. 
So he is now sending her to see a rheumatologist to see if there is something with the joints. 
When I called earlier today to find out the test results the nurse said we were going to see the CF doc to rule out any CF causes. Mind you we already had this appt set up for CF clinic anyways so.. We have spoken to the CF docs about this already and they had no clue what was causing the issues.
Her appt is the 17th of next month. The soonest I could get her into the rheumatologist was the 25th of next month. 
Honestly I am just exhausted and feel so frazzled by the whole ordeal. The CF clinic has been checking her vitamins so I'm guessing those aren't it. She isn't on any kind of steroid. Am I missing something here as far as possible CF involvment?
Just curious if this might be some part of the disease that rarely happens to it isn't discussed as much or could we be looking at something totally different?

Jen mom to 4 kiddos. 3 w/cf and 1 lucky little red head.

mysticrose · Dec 14, 2011

Wierd question time. Is joint pain in a slow growing 13 yr old part of CF?

My DD with CF for almost a year now has been having random joint pain. Her knee has swelled up about twice it's original size twice. This last time she was not able to put any weight on it at all.Before this happened her wrist was hurting too.I have taken her to the pediatrician, who sent us to the Orthopedic clinic.They claimed she has Superior Plicas Syndrom (SP) basically she has a fluid sac above the knee that can cause it to swell. Over the summer it would become inflamed but she could manage with it. 
Last week she couldn't bear any weight on her leg so I took her back to the Ped. Before all this happened with her knee her hips were hurting her as well. We have ruled out injury, infection and apparently the blood test for arthritis came back negative as well. 
So he is now sending her to see a rheumatologist to see if there is something with the joints. 
When I called earlier today to find out the test results the nurse said we were going to see the CF doc to rule out any CF causes. Mind you we already had this appt set up for CF clinic anyways so.. We have spoken to the CF docs about this already and they had no clue what was causing the issues.
Her appt is the 17th of next month. The soonest I could get her into the rheumatologist was the 25th of next month. 
Honestly I am just exhausted and feel so frazzled by the whole ordeal. The CF clinic has been checking her vitamins so I'm guessing those aren't it. She isn't on any kind of steroid. Am I missing something here as far as possible CF involvment?
Just curious if this might be some part of the disease that rarely happens to it isn't discussed as much or could we be looking at something totally different?

Jen mom to 4 kiddos. 3 w/cf and 1 lucky little red head.

sdelorenzo · Dec 14, 2011

I sent you a private message.
Sharon

sdelorenzo · Dec 14, 2011

I sent you a private message.
Sharon

jessykt · Dec 14, 2011

I had severe knee problems growing up and was told it was just growing pains. My knee swelled quite a bit as well. That all passed until around my 30s. I started having terrible knee pain along with ankle soreness. Saw the rheumatologist who put me on some meds, but didn't seem to work. Went to physical therapy and did exercises for several weeks strengthening different muscles needed to walk PROPERLY. Best thing I ever did. Virtually pain free now.

So...I do think teen years were riddled with growing pains. It makes sense: bodies are growing quickly. You think she is growing slowly, but her knee could be growing faster than the rest of her and it doesn't have room to grow. That's what I was told anyway.

As soon as I started therapy, my right foot finally turns straight when I walk (it always turned outward). I don't think this had much to do with CF. It IS TRUE that we are more prone to osteoporosis and arthritis, but in MY case, it didn't have much to do with either.

Wish your daughter all the best!!

jessykt · Dec 14, 2011

I had severe knee problems growing up and was told it was just growing pains. My knee swelled quite a bit as well. That all passed until around my 30s. I started having terrible knee pain along with ankle soreness. Saw the rheumatologist who put me on some meds, but didn't seem to work. Went to physical therapy and did exercises for several weeks strengthening different muscles needed to walk PROPERLY. Best thing I ever did. Virtually pain free now.

So...I do think teen years were riddled with growing pains. It makes sense: bodies are growing quickly. You think she is growing slowly, but her knee could be growing faster than the rest of her and it doesn't have room to grow. That's what I was told anyway.

As soon as I started therapy, my right foot finally turns straight when I walk (it always turned outward). I don't think this had much to do with CF. It IS TRUE that we are more prone to osteoporosis and arthritis, but in MY case, it didn't have much to do with either.

Wish your daughter all the best!!

tammykrumrey · Dec 14, 2011

My younger daughter had a problem with her elbow swelling up. It has happened a few times now. But the same thing...tested for arthritis, and it came back negative. It simply had fluid on it, but no real cause could be pinpointed. She kept it wrapped up for a few days, until the swelling went down. She is a very slow grower too! She is tiny for her age. Both of my girls complain, periodically, over joint pains <img src="i/expressions/face-icon-small-sad.gif" border="0">

tammykrumrey · Dec 14, 2011

My younger daughter had a problem with her elbow swelling up. It has happened a few times now. But the same thing...tested for arthritis, and it came back negative. It simply had fluid on it, but no real cause could be pinpointed. She kept it wrapped up for a few days, until the swelling went down. She is a very slow grower too! She is tiny for her age. Both of my girls complain, periodically, over joint pains <img src="i/expressions/face-icon-small-sad.gif" border="0">

Gammaw · Dec 14, 2011

Your post made me wonder if she's on anything like Septra. My 6 year old had a couple of bouts of joint pain while on it, even though he had been on it many times before with no incidents. I discovered the fine print on the medication that indicated joint pain as a potential side effect, even an indication of an allergic reaction. Whenever any of my children come up with a new symptom I go to the fine print on the meds as one of my first sources. It's amazing what you will find there! We took him off of Septra and have had no recurrence. Just a thought! (and frankly the health care professionals don't usually think to look there unless it's a common side effect they see a lot).

Gammaw · Dec 14, 2011

Your post made me wonder if she's on anything like Septra. My 6 year old had a couple of bouts of joint pain while on it, even though he had been on it many times before with no incidents. I discovered the fine print on the medication that indicated joint pain as a potential side effect, even an indication of an allergic reaction. Whenever any of my children come up with a new symptom I go to the fine print on the meds as one of my first sources. It's amazing what you will find there! We took him off of Septra and have had no recurrence. Just a thought! (and frankly the health care professionals don't usually think to look there unless it's a common side effect they see a lot).

mysticrose · Dec 17, 2011

Oh my goodness.. Thank you all for the information it has been very helpful. I really appreciate having some place to come and get answers to my random questions.

Jen.. mom to 4 kids. 3 w/cf and one lucky red head.

mysticrose · Dec 17, 2011

Oh my goodness.. Thank you all for the information it has been very helpful. I really appreciate having some place to come and get answers to my random questions.

Jen.. mom to 4 kids. 3 w/cf and one lucky red head.

dbsholes · Dec 18, 2011

Check into likely Vitamin D deficiency.
 
 Okay. I just reread your original post and see that you believe the Vitamins are being monitored - but double check the Vitamin D anyway. And read up on Vitamin D and arthritis on the internet to see how they are linked. Vitamin D is one of the fat-soluble vitamins, and people with absorbtion problems tend to have low levels. If your cf kids aren't already on a specially formulated version of ADEK they should be. Vitamin D is one of the body's natural anti-inflamatories so low levels will clearly result in inflamation - and not only in the joints but in the lungs as well. Vitamin D also effects mood, energy, and depression - all of which most people with cf deal with at some time or another (the depression if it hits, usually hits in the late teens). My story is long and I can't write it all here, but I have much to offer you in the way of my personal experience - very recent and highly relevant. I am 44 w/cf DD508. I began having the exact same problems that you describe with your daughter when I was thirteen. Between 13 and 18 I had ongoing and oftentimes severe joint pain - especially in my knees, wrists (I couldn't do push-ups in gym class - imagine how that "marked" me going through high school!), and fingers. But I can honestly say that there is not a single joint in my body that went unaffected: jaw, spine, hips, shoulders (the worst when it's really bad), feet, ankles..... you name it. I was told at the time - early 1980s - by my doctors that there was a form of arthritis that was associated with cf...... but that this wasn't my problem. I was told I had a form of JRA (Juevenille Rheumatoid Arthritis - don't hate me for my spelling). I didn't believe it then and I don't believe it now. I don't think anyone could be so unlucky as to have two entirely separate diseases - especially given what we know now, that cf effects almost every system of the body in some way. I have always been certain that my joint problems are related to cf. Turns out I am correct. They are related to low Vitamin D levels. For the past 26 years I have been largely joint-pain-free, except for a handful of days each year. There has been one or two days each year when the arthritis sets in so bad that I cannot get out of bed. I came to accept this and simply would take a sick day and spend my day reading. Beginning about six months ago my arthritis began coming back - with a vengeance. I attributed it to a humid summer here in Vermont and simple aging. I began taking a lot of pain medication (the overuse of which landed me in the hospital with bleeding ulcers when I was fifteen) and Glucosamine. They didn't help and the arthritis got worse than it had ever been. I couldn't type. In the mornings I would sometimes have to slide on my butt to get down the stairs. I have an eleven year old daughter (donated sperm) whom I could do nothing with. In early October I had a full blood panel done. My Vitamin D levels were the lowest it had been as long as my current clinic's records go back - ten years. Normal is between 30 and 80. Mine was 11.6. Then I realized that I had stopped taking ADEK when my script ran out over a year ago. My insurance doesn't pay for vitamins of any kind, so when it ran out I figured I'd save $50 a month and just not use it. They're just VITAMINS, right? In addition to low vitamin D my bloodwork showed elevations or reductions everywhere that indicates inflammation and/or infection - but my lung disease is very mild (I've had ONE "tune-up" in my life - when I was thirty-seven). My endocrinologist (CFRD since 2004) saw these low vitamin D levels in early November and put me on a very high dosage of a couple of different types of absorbable vitamins - about 70,000 units a week. Within two weeks my joint pain was gone. Mind you, I had not talked to either my pulmonologist or endocrinologist about my arthritis problems. I had made an appointment for early January with a rheumatologist. So none of us were looking to raise my vitamin D levels because of my joint problems - we did it just because it was very low. Bloodwork this past week came back with my vitamin D in the 40s. Still pain free. AND.. the connection between vitamin D and arthritis has been made only in the last few years (to my knowledge) and therefore wasn't considered when I was a teenager. I'd say it's definitely worth looking into. Best,David SholesBennington Vermont(303) 882-6070 - feel free to call me if you want. p.s. - the Vitamin D I am currently using are 1) standard vitamin D supplements 1000 units twice daily; 2) Vitamin D2 prescribed, 50,000 units once weekly; 3) Aquadeks softgel (this is a change from ADEK - same supplement but different formulation) twice daily. http://www.otcrx4u.com/aquadeks-softgels-nutritional-supplement-60-each.html

dbsholes · Dec 18, 2011

Check into likely Vitamin D deficiency.
 
 Okay. I just reread your original post and see that you believe the Vitamins are being monitored - but double check the Vitamin D anyway. And read up on Vitamin D and arthritis on the internet to see how they are linked. Vitamin D is one of the fat-soluble vitamins, and people with absorbtion problems tend to have low levels. If your cf kids aren't already on a specially formulated version of ADEK they should be. Vitamin D is one of the body's natural anti-inflamatories so low levels will clearly result in inflamation - and not only in the joints but in the lungs as well. Vitamin D also effects mood, energy, and depression - all of which most people with cf deal with at some time or another (the depression if it hits, usually hits in the late teens). My story is long and I can't write it all here, but I have much to offer you in the way of my personal experience - very recent and highly relevant. I am 44 w/cf DD508. I began having the exact same problems that you describe with your daughter when I was thirteen. Between 13 and 18 I had ongoing and oftentimes severe joint pain - especially in my knees, wrists (I couldn't do push-ups in gym class - imagine how that "marked" me going through high school!), and fingers. But I can honestly say that there is not a single joint in my body that went unaffected: jaw, spine, hips, shoulders (the worst when it's really bad), feet, ankles..... you name it. I was told at the time - early 1980s - by my doctors that there was a form of arthritis that was associated with cf...... but that this wasn't my problem. I was told I had a form of JRA (Juevenille Rheumatoid Arthritis - don't hate me for my spelling). I didn't believe it then and I don't believe it now. I don't think anyone could be so unlucky as to have two entirely separate diseases - especially given what we know now, that cf effects almost every system of the body in some way. I have always been certain that my joint problems are related to cf. Turns out I am correct. They are related to low Vitamin D levels. For the past 26 years I have been largely joint-pain-free, except for a handful of days each year. There has been one or two days each year when the arthritis sets in so bad that I cannot get out of bed. I came to accept this and simply would take a sick day and spend my day reading. Beginning about six months ago my arthritis began coming back - with a vengeance. I attributed it to a humid summer here in Vermont and simple aging. I began taking a lot of pain medication (the overuse of which landed me in the hospital with bleeding ulcers when I was fifteen) and Glucosamine. They didn't help and the arthritis got worse than it had ever been. I couldn't type. In the mornings I would sometimes have to slide on my butt to get down the stairs. I have an eleven year old daughter (donated sperm) whom I could do nothing with. In early October I had a full blood panel done. My Vitamin D levels were the lowest it had been as long as my current clinic's records go back - ten years. Normal is between 30 and 80. Mine was 11.6. Then I realized that I had stopped taking ADEK when my script ran out over a year ago. My insurance doesn't pay for vitamins of any kind, so when it ran out I figured I'd save $50 a month and just not use it. They're just VITAMINS, right? In addition to low vitamin D my bloodwork showed elevations or reductions everywhere that indicates inflammation and/or infection - but my lung disease is very mild (I've had ONE "tune-up" in my life - when I was thirty-seven). My endocrinologist (CFRD since 2004) saw these low vitamin D levels in early November and put me on a very high dosage of a couple of different types of absorbable vitamins - about 70,000 units a week. Within two weeks my joint pain was gone. Mind you, I had not talked to either my pulmonologist or endocrinologist about my arthritis problems. I had made an appointment for early January with a rheumatologist. So none of us were looking to raise my vitamin D levels because of my joint problems - we did it just because it was very low. Bloodwork this past week came back with my vitamin D in the 40s. Still pain free. AND.. the connection between vitamin D and arthritis has been made only in the last few years (to my knowledge) and therefore wasn't considered when I was a teenager. I'd say it's definitely worth looking into. Best,David SholesBennington Vermont(303) 882-6070 - feel free to call me if you want. p.s. - the Vitamin D I am currently using are 1) standard vitamin D supplements 1000 units twice daily; 2) Vitamin D2 prescribed, 50,000 units once weekly; 3) Aquadeks softgel (this is a change from ADEK - same supplement but different formulation) twice daily. http://www.otcrx4u.com/aquadeks-softgels-nutritional-supplement-60-each.html

DrRoe · Dec 18, 2011

When my son (18wcf) was younger he often complained of joint pain, at first I didn't connect it with cystic fibrosis (CF) as I had juvenile rheumatoid arthritis myself. However, I eventually did a little research and found several studies that suggest pwcf are more likely to develop polyarthritis. If you want to read those articles you can find them at www. pubmed .gov (delete the spaces) by searching for cystic fibrosis polyarthritis - or give me a shout.. I'm not sure I'm allowed to post links to them here.

DrRoe · Dec 18, 2011

When my son (18wcf) was younger he often complained of joint pain, at first I didn't connect it with cystic fibrosis (CF) as I had juvenile rheumatoid arthritis myself. However, I eventually did a little research and found several studies that suggest pwcf are more likely to develop polyarthritis. If you want to read those articles you can find them at www. pubmed .gov (delete the spaces) by searching for cystic fibrosis polyarthritis - or give me a shout.. I'm not sure I'm allowed to post links to them here.

azdesertrat · Dec 19, 2011

I can remember having joint pain all my life & it gets worse every year. Arthritis is a part of CF, so I'm told.
Vitamin D deficiency was mentioned earlier & I suppose it could have something to do with it; I've been contending with that all my life.
Hopefully, someday soon some doctor will come up with a way of alleviating this symptom.
I would suggest talking with your child's CF team & pediatrician about this; hopefully they'll be able to come up with some way of dealing with this.
Our best to you & yours, Merry Christmas & a Happy, Healthy '12 to all.

azdesertrat · Dec 19, 2011

I can remember having joint pain all my life & it gets worse every year. Arthritis is a part of CF, so I'm told.
Vitamin D deficiency was mentioned earlier & I suppose it could have something to do with it; I've been contending with that all my life.
Hopefully, someday soon some doctor will come up with a way of alleviating this symptom.
I would suggest talking with your child's CF team & pediatrician about this; hopefully they'll be able to come up with some way of dealing with this.
Our best to you & yours, Merry Christmas & a Happy, Healthy '12 to all.

dbsholes · Dec 19, 2011

I realize I sounded like a vitamin D evangelical in my previous long post. Cf is a disease which effects every person differently, so while vitamin D appears to be the answer to MY joint problems, it may not be the answer to everyone's. Children who's bodies are still growing may have joint discomfort for a host of reasons and the most important thing for your kids is that you DO NOT GIVE UP finding the cause. I spent five LONG years as a teenager dealing with severe joint pain that seriously effected my ability to move normally in my social circle. Try to do better for your kids. One thing any adult with a serious medical problem will tell you is that you cannot solely rely on your doctors; you MUST become you own advocate and in some cases FIGHT the doctors to get what you need.
 
 Yet.. I'd like to offer a Vitamin D postscript: My father will be eighty years old on January 3 - not your normal eighty year old but one who still backpacks, mountain bikes, and walks an average of five miles a day when he's not doing the other things. I'd say his body is a good fifteen to twenty years younger than his age. He lives in the foothills of Colorado, where I was raised. When I told him about my vitamin D "breakthrough" he told me that he'd been having recent discomfort with his knees that were beginning to slow him down. He was content to attribute it to age. I said it probably IS age-related: Vitamin D levels naturally decline with age. I suggested he have a blood panel done and see where his Vitamin D levels were. He did so, and they were in the low end of the normal range. He began taking daily supplements several weeks ago and he reported to me earlier today that his joint discomfort has gone. Good Outcomes.
 
 David Sholes
 44yo male DDFf08; CFRD since '04

dbsholes · Dec 19, 2011

I realize I sounded like a vitamin D evangelical in my previous long post. Cf is a disease which effects every person differently, so while vitamin D appears to be the answer to MY joint problems, it may not be the answer to everyone's. Children who's bodies are still growing may have joint discomfort for a host of reasons and the most important thing for your kids is that you DO NOT GIVE UP finding the cause. I spent five LONG years as a teenager dealing with severe joint pain that seriously effected my ability to move normally in my social circle. Try to do better for your kids. One thing any adult with a serious medical problem will tell you is that you cannot solely rely on your doctors; you MUST become you own advocate and in some cases FIGHT the doctors to get what you need.
 
 Yet.. I'd like to offer a Vitamin D postscript: My father will be eighty years old on January 3 - not your normal eighty year old but one who still backpacks, mountain bikes, and walks an average of five miles a day when he's not doing the other things. I'd say his body is a good fifteen to twenty years younger than his age. He lives in the foothills of Colorado, where I was raised. When I told him about my vitamin D "breakthrough" he told me that he'd been having recent discomfort with his knees that were beginning to slow him down. He was content to attribute it to age. I said it probably IS age-related: Vitamin D levels naturally decline with age. I suggested he have a blood panel done and see where his Vitamin D levels were. He did so, and they were in the low end of the normal range. He began taking daily supplements several weeks ago and he reported to me earlier today that his joint discomfort has gone. Good Outcomes.
 
 David Sholes
 44yo male DDFf08; CFRD since '04

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