Adult CF and joint problems

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Dea

New member
I am 37 and have suffered with this joint pain since I was 9. When I was younger I got the rash...but as an adult not too often...but definitely get the flare ups and the awful joint pain. The only thing that I have found that helps me is prednisone. This is some type of arthritis and I see a rheumatologist for it. He also thought it was Still's disease...but really isnt sure. Mine has led to rheumatoid arthritis now after all these years. I am on methotrexate and prednisone but the flare ups are happening quite frequently...and most of the time they are so random. Other times, if I do overwork my body physically...I have a flare up.
<br />There is so little known about this problem that they arent sure what it is ...or even how to treat it. As I said, since this seems to be an inflammatory flare up...prednisone should help. Most of the time, I dont need a big dose...but do need to take it for several days before it goes away completely. Good Luck to you...if you have any questions I would be happy to talk...
 
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nick9742

New member
I am just about to turn 21, and my joints started to ache and hurt horribly around the age of 18. Mine are so severe I had to go on long-term pain management. I went through all the NSAID stuff, Mobix, everything for arthritis and joint pain thats non-narcotic but nothing helped. I was referred to a pain management clinic for it and now mine are so bad I have to take 40mg of Methadone a day and 40-50mg of Oxycodone (Percocet) every day. Though it does keep me comfortable and I definitely can tell when I don't take them that the same pains are still there.
The pain for me was in my legs, ankles, shoulders, and ESPECIALLY my knees - they would hurt to the point I'd almost be crying nor could I walk. Some days even down to my knuckles, wrists, and toes! It's awful I know, so I hope you can get some relief somehow. I tried waiting almost 2 years before going to narcotics but when you literally can't walk or do any normal day activities from body/joint pain I didn't really care what I took as long as it helped me function normally, and I do now.
 
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nick9742

New member
I am just about to turn 21, and my joints started to ache and hurt horribly around the age of 18. Mine are so severe I had to go on long-term pain management. I went through all the NSAID stuff, Mobix, everything for arthritis and joint pain thats non-narcotic but nothing helped. I was referred to a pain management clinic for it and now mine are so bad I have to take 40mg of Methadone a day and 40-50mg of Oxycodone (Percocet) every day. Though it does keep me comfortable and I definitely can tell when I don't take them that the same pains are still there.
The pain for me was in my legs, ankles, shoulders, and ESPECIALLY my knees - they would hurt to the point I'd almost be crying nor could I walk. Some days even down to my knuckles, wrists, and toes! It's awful I know, so I hope you can get some relief somehow. I tried waiting almost 2 years before going to narcotics but when you literally can't walk or do any normal day activities from body/joint pain I didn't really care what I took as long as it helped me function normally, and I do now.
 
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nick9742

New member
I am just about to turn 21, and my joints started to ache and hurt horribly around the age of 18. Mine are so severe I had to go on long-term pain management. I went through all the NSAID stuff, Mobix, everything for arthritis and joint pain thats non-narcotic but nothing helped. I was referred to a pain management clinic for it and now mine are so bad I have to take 40mg of Methadone a day and 40-50mg of Oxycodone (Percocet) every day. Though it does keep me comfortable and I definitely can tell when I don't take them that the same pains are still there.
<br />The pain for me was in my legs, ankles, shoulders, and ESPECIALLY my knees - they would hurt to the point I'd almost be crying nor could I walk. Some days even down to my knuckles, wrists, and toes! It's awful I know, so I hope you can get some relief somehow. I tried waiting almost 2 years before going to narcotics but when you literally can't walk or do any normal day activities from body/joint pain I didn't really care what I took as long as it helped me function normally, and I do now.
 
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kmhbeauty

New member
Thank you everyone for the info. I have been working my body too hard at the gym and I think that could be whats doing it but not sure. I havnt gone in a couple weeks so the only other thing I can think of is a low immune system because I just had surgery on my nose. Today the pain was so bad I couldnt move. Never been in so much pain in my whole life. Im just hoping when I go to clinic they can help me because Im not sure how Im going to work if I keep getting these.
 
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kmhbeauty

New member
Thank you everyone for the info. I have been working my body too hard at the gym and I think that could be whats doing it but not sure. I havnt gone in a couple weeks so the only other thing I can think of is a low immune system because I just had surgery on my nose. Today the pain was so bad I couldnt move. Never been in so much pain in my whole life. Im just hoping when I go to clinic they can help me because Im not sure how Im going to work if I keep getting these.
 
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kmhbeauty

New member
Thank you everyone for the info. I have been working my body too hard at the gym and I think that could be whats doing it but not sure. I havnt gone in a couple weeks so the only other thing I can think of is a low immune system because I just had surgery on my nose. Today the pain was so bad I couldnt move. Never been in so much pain in my whole life. Im just hoping when I go to clinic they can help me because Im not sure how Im going to work if I keep getting these.
 
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ehtansky21

New member
I just did a post on omega 3's. You may be past looking at natural remedies, as the pain sounds terrible, but omegas treat inflammation, which is what sounds like is your problem???

<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/07/benefits-of-omega-3-fatty-acids-are.html
">http://chasing-truth.blogspot....-fatty-acids-are.html
</a>
blessings, missa
 
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ehtansky21

New member
I just did a post on omega 3's. You may be past looking at natural remedies, as the pain sounds terrible, but omegas treat inflammation, which is what sounds like is your problem???

<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/07/benefits-of-omega-3-fatty-acids-are.html
">http://chasing-truth.blogspot....-fatty-acids-are.html
</a>
blessings, missa
 
E

ehtansky21

New member
I just did a post on omega 3's. You may be past looking at natural remedies, as the pain sounds terrible, but omegas treat inflammation, which is what sounds like is your problem???
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/07/benefits-of-omega-3-fatty-acids-are.html
">http://chasing-truth.blogspot....-fatty-acids-are.html
</a><br />
<br />blessings, missa
 
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nmw615

New member
I've had pain in the knees for almost 5 years now, and just this past year I've developed pain in my hips. Thankfully I've been able to control it with regular pain meds (knock on wood), but I'll be using the omega 3's into consideration if it ever gets worse. Thanks!
 
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nmw615

New member
I've had pain in the knees for almost 5 years now, and just this past year I've developed pain in my hips. Thankfully I've been able to control it with regular pain meds (knock on wood), but I'll be using the omega 3's into consideration if it ever gets worse. Thanks!
 
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nmw615

New member
I've had pain in the knees for almost 5 years now, and just this past year I've developed pain in my hips. Thankfully I've been able to control it with regular pain meds (knock on wood), but I'll be using the omega 3's into consideration if it ever gets worse. Thanks!
 
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