consistant flu symptoms (sensative skin, muscle aches, low energy)

[antjm]

My name is Anthony and i am an 18 year old with Cystic Fibrosis, recently I have been feeling the symptoms listed in the title coming on and off for no particular reason. Its more frustrating than anything, I've been on the new drug Kalydeco for almost 2 years now and my PFT's have been higher than they've ever been (95-100) and there is no reason i should be feeling this way. I could feel perfectly fine one minute, and then the next thing i know i feel like Ive caught some horrible flu of some kind. I'm going away to college this month and i really don't want to feel this way anymore. If anyone has been feeling the same way and has found a solution, I'd really appreciate some help.

-thanks

 

[momofmia]

Anthony,
My daughter also complains of sensitive skin and muscle aches and it hits her out of no where. Mia is on Pulmozyne, Hypersal and Dulera. She also gets intermittant fevers when her lungs are gunky.
Lisa

 

[sabrina77]

I'm not sure if we have the same thing. I am 26 years old now, but in high school I started getting random muscle pains. The pain/stiffness would be in my neck, wrists, legs, hips, elbows and would last for a few days. The pain starts out of no where for me and usually does not have any correlation with my lung functions. It hurts to move and it is really quite miserable. When I was in college I was diagnosed with Cystic Fibrosis Related Arthritis. I still get pains that last a few days every once in a while. I get flare ups about 2-3 times a year and they last anywhere from 2 days to a week. I am put on a steroid which helps when I have arthritis flare up.

 

[momofmia]

I didn't know there was such a diagnosis? Hmmm...interesting.
Lisa

 

[lilmac1177]

i'm 34 years old and i just went to a Rheumatologist in the beginnings of trying to find out where my joint pain is coming from. i used to get it once a month or so, it would affect my neck, wrists, knuckles, hips and knees and last about a week (i would just take Motrin to alleviate the pain) then it would be gone 'til next time. around the beginning of August, however, i had it for about two weeks straight and Motrin, nor Aleve, were helping the pain and that's when i started the referral process to be seen by Rheumatology. in waiting for blood work to come back, i've been taking Prednisone which has worked wonders for the pain but with CFRD, Prednisone is not ideal for long-term treatment if it can be avoided. so far, we've ruled out RA and Lupus, but just today i got a call back that blood test #2 for Lyme came back "partial positive"??? soooo, for now i'm continuing w/ 7.5mg of Prednisone (in case it's not Lyme), but she wants me to start Doxycycline to err on side of caution in case it IS Lyme and also wants me to see an Infectious Disease doc. it could still be a false positive that i guess the Infectious Disease physician will look into further. if it ends up not being Lyme (which i'm not convinced still that it is), it may still ultimately be written off as CF-Associated Arthritis...

good luck in finding out what is causing your pain!