Hi auggie,
Can't really help you on this, as never had this problem. I have some muscles problems-but mine are all about
muscle enzyme levels and not related too CF or steroids.
However, I can sympathised with you on pain. Nefopam (aka Acupan) is good for targeting muscle pain, and may help you. Heat packs are also good for pain in one place.
I do know though-that you aren't alone in steroids causing pain. I have heard other stories similar from my friends. The pain usually begins too fade after they have stopped taking steroids. Do you have a finish date for them, or are you just on them long term, for as long as you need them?
My suggestion would be, ring your doctor (or cf team if you have one) and see whether there is anything they can suggest, which might help. 3 years is a long time too be on steroids, and there is no wonder that you are in so much pain.
Hope it gets better soon
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
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