Joint pain and meds

[Kaitsmom]

I have read that some people with Cf have joint pain and take pain meds for it. Kait has pain in her arms, legs and knees alot. She is only 10 years old and sometimes the pain is so bad that it makes her cry. I told her docs about it last week and i am just wondering what do they do at age 10? Did your pain start at such an early age and how do the docs diagnose what the problem is and do they actually put you on pain meds at that early of an age? I am getting real concerned because at first i thought maybe it was because she is so active and was just playing too hard, but tonight it was her knees bothering her. What can i do for her? Any info would really help because the docs didn't really say too much about it.

Thanks

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[Allie]

Ry started getting CF related arthritis when he was 12, and was on a bunch of meds throughout his life. Have you tried OTC meds yet? usually the extra stretgh stuff would help through a normal arthritis exacerbation. but as he got older, it got worse and he was on prescription meds.

 

[Kaitsmom]

Allie

I have given her tylenol and sometimes it works and other times not! Tonight she finally went to sleep but i feel so bad when there is nothing that i can do for her.
Wow...arthiritis at such an early age... she loves being active and i would hate for arthirtis to stop her.

Thanks for the info and by the way..... Ry is handsome<img src="i/expressions/face-icon-small-smile.gif" border="0">

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[Allie]

I'd try ibuprofen for inflammation, but you may eventually have to go on prescription for the pain, Ry was on it by age 20. Ry could keep going, he just had to sometimes take pain meds before he would hike or whatever. Also, massage every so often seemed to help.

and thanks<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that, but it's always nice to hear.

 

[wuffles]

I use ibuprofen, which can lessen the pain but never makes it go away completely. I usually take some ibuprofen and lie down with a heat pack on my knees. Not so good when you're at school/work though...

EDIT: I have only experienced the pain for a few years now, and it has not been formally diagnosed. My doctor suggests that it is from sports (I play volleyball) but I'm 90% sure it's not. While it is not completely debilitating, I'll leave it at that!

 

[anonymous]

Hi!
Most cf antibiotics Cipro, Levoquin (a couple of others-i"ll look it up) leach magnesium from the body...they cannot work with magnesium in abundance. Most kids, adults with cf suffer from magnesium deficiency and that can really exacerbate any arthritis issues. I would get her on a good magnesium calcium supplement ..Bluebonnet makes a great one...a gel cap with zic, vit D, calcium and of course magnesium. An added benefit of magnesium is it helps smooth muscles which can alleviate asthma symptoms.

For many years I suffered from SEVERE arthritis and was told it was just a complication of the disease and that my illness was getting worse. I could not get out of bed some days...my friends piggy-packed me in college because my arthritis was so severe. You can change this I promise. I was on steroids for two years straight....nothing helped. Magnesium, glutathione, turmeric and have COMPLETELY taken away my arthritis symptoms....

Get the inflammation under control. try a low sugar diet....I never believed it but it changed my life.....Perricone promise is a great book to understand the way inflammatory diseases feed off poor nutrition.

Also, goole magnesium and cystic fibrosis...you will learn A LOT

hope this helps.
mandy 33 cf/cfrd

 

[anonymous]

PS I will gladly talk on the phone about this....you can really help her without all of conventional meds. email me if you want to talk.
mandy
dramamama is my username.....

 

[Ricky]

I know this reply is coming a little late I just joinned yestaerday but i might have an answer to your daughters pain issues. I turned 40 last week and i have CF. I go to a pain managemnent doctor to deal with my pain issues. I lived in Atlanta for the last 15 years and starting seeing a pain specialist 10 years ago I have just moved back to hoover Alabama and I go to the Birmingham Pain Center to deal with my pain issues. I'm 40 years old and the pain makes me cry sometimes also. I've had sinus surgery 7 times, back suirgery, knee surgery, and two other surgeries that would make a grown man cringe. Unfortunatety it's an issue all cf patients will have to deal with at somtime during their life. Seeing a pain specialist has greattly improved my quality of life it's help keep me active and out of the hospital. i hope this might give you an option for yor worries.

 

[anonymous]

hi, mandy again. I just wanted to tell you that I reread your post and you said she had pain in her arms and legs...not her joints? Now, I really think you need to look at magnesium. has she been on antibiotics lately?

 

[anonymous]

Mandy
Hello this is Kaitsmom
Kait always complains about pain in her arms and legs, she also has alot of headaches as well. I have tried to get her to explain to me how the pain feels and if she thinks that it is her muscles or her bones. Well she is only 10 and i don't think she can really explain it. She says that at school today when she was running her legs felt like she was going to fall, like they were giving out on her. She also says that her bones feel like they are rotten. ??????

I really appreciate everyone's advice on this issue and i will look up CF and magnesium.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[Faust]

Try oil of oregano and NAC. Both are real strong antiinflamatories. I know oil of oregano totally owned my gout for good, where regular drugs didn't do sheet.