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anonymous
06-27-2003, 09:09 AM
i was wondering if anyone of you had ever experienced this problem.when i was a kid in ukraine and didn't receive proper treatment for my cf and my health was really bad, i was suffering from extreme leg pain. either i couldn't bend my legs [thus not letting me walk, stand or even move] or my knees would get really sore and swollen, to the point where my mother would call the ambulance on a daily basis so that they'd give me a shot with very strong painkillers. when i moved to israel and got good cf treatment, my legs were fine. now as i am getting sicker, every time my lungs give me trouble, so do my legs - they are very sore [not muscle ache but more like having someone taking a chainsaw to my bones] and sometimes i almost cannot walk.i talked to my doctor about it and she said that having a lung inflammation can affect other areas of the body, and probably that is what's happening. did that ever to you?[and off-topic, where can i register for this board instead of being 'anonymous'?]==========================I'm a 20-year-old CF-er from Israelcurrent FEV1 - 61%

Lois
06-27-2003, 09:26 AM
okay, i figured out the registering thing <img src="i/expressions/face-icon-small-smile.gif" border="0">

Dea
06-27-2003, 12:58 PM
Hi Lois,I am a 30 yr old female with CF. When I was about 10 I started having problems with my legs just like you are describing. For a while it got better...and now again as I get older is getting worse. My docs have linked it to some type of arthritis that is related to the CF. They dont know a whole lot about it yet...but is more common in females.. I have talked to several other CF females who also have the same problems. Also as I have gotten older, it also affects more parts of my body including my hands, back,shoulders,hips,neck....you name it and it s usually affected. Anyway...I started on naprosyn many years ago..and that helped for a while. Then I had to have a prescription medicine which lasted for a couple of years. Now the only thing that helps is prednisone. It helps with the swelling which then helps to reduce the pain. I'm not sure of how Israel handles CF...I'm sure there are many differences compared to the U.S.A., which is where I am. Maybe mention to your doctor about what I have said....about the possibility of arthritis....by what you have described it sounds just like my problems! I hope you find out soon! Good Luck and Take Care!By the way...my email address is [email protected] if you would like to chat.Dea

jmazz
06-29-2003, 05:20 PM
I too have been battling against the same kind of pain. It is some arthritis related to CF that they dont know much about or exactly how to treat it. I started with the pain in my late teens and as i got older it got worse, too the point that i couldnt even take care of myself because my joints were so swollen and in so much pain, i also had a red blotchy rash on my arms and legs with it. I seen 6 drs and each didnt know what was happening. I finally seen a adult rheumatologist and he did some research and found that it is related to the CF but dont know much about it. However i'm on celebrex 400 mg daily...it has been a blessing ....i still get alittle stiff but not nearly the amount of stiffness and pain i used to be in. If i have a severe flare up they gave me percoset to take the edge off. I havent needed one since i've been on the celebrex and its been 7 months now. If you have any more question feel free to ask.<img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
07-01-2003, 05:15 PM
My daughter would wake up with really bad knee pain , so bad I would need to carry her out of her room. The docs. said it was a side effect of Cipro. She has never had Cipro again, and had not had leg or knee pain since. She is charted as being allergic to it.

Dea
07-01-2003, 06:46 PM
Wow...thats really strange about being a side effect of Cipro. I know mine is not Cipro related because when I was about 10 was when my pain started happening...I didnt even start taking Cipro until I was an adult...actually dont think it was around when I was 10...that was 20 yrs ago. Anyway...mine no longer is just in my legs...mine is all over...as I have talked to Jessica before and we share the same symptoms. It definitely is a type of arthritis that is CF related...docs just dont know a whole lot about it yet as is not very common. But is very painful...mine are what I call "flare ups" because they come and they go, but as I get older they are reocurring more often. They are so painful that I cant move...to do anything hurts. My hubby has to help me get up to go to the restroom! I literally cannot move by myself! Just a little info for you....Dea

Merlin
07-18-2003, 11:52 PM
Yeah, Cipro has been a problem for me. When i was on it as a child, i had such bad leg pains.. i couldnt walk, bend my knees, or run in gym anymore.. it started to interfere with my excersizing.. I asked the doctors about it and they said that they didnt know what it could be from. A few years later I saw a newscast about Cipro being used for Anthrax and what its side effects where and there were my knee pains! I got put on a smaller dosage of cipro and things became better. Are you on Diclox, Urso (also called ursodial, ursocil, etc) or Cipro? all of those could be connected to ur problems.. but many arthritis medications can help with that.. talk to you dr about it <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
07-25-2003, 09:42 PM
My son is 17 now and about 9 months ago he started experiencing severe leg and ankle pains and swelling of his foot and ankle. The drs. didn't know at first what was causing it but then after several trips to the pediatrician, he called a friend of his who is a rheumotologist. He told him sometimes different antibiotics will attack healthy parts of the body in CF patients causing this reaction. My son pinpointed the drug as minocycline. The 3rd time the drs. tried to prescribe it, he refused to take it saying he thought that was what was causing his severe pain and swelling. Sure enough, he had me look back thru my records and both times he got this was right after being prescribed the minocycline. His chart now says he is not to be given this drug. <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
07-25-2003, 09:42 PM
My son is 17 now and about 9 months ago he started experiencing severe leg and ankle pains and swelling of his foot and ankle. The drs. didn't know at first what was causing it but then after several trips to the pediatrician, he called a friend of his who is a rheumotologist. He told him sometimes different antibiotics will attack healthy parts of the body in CF patients causing this reaction. My son pinpointed the drug as minocycline. The 3rd time the drs. tried to prescribe it, he refused to take it saying he thought that was what was causing his severe pain and swelling. Sure enough, he had me look back thru my records and both times he got this was right after being prescribed the minocycline. His chart now says he is not to be given this drug. <img src="i/expressions/face-icon-small-smile.gif" border="0">