CF adults w/ chronic joint & mucle pain

[JustDucky]

To Matt....I have been on pain meds chronically for years, so I am on higher doses than what would be prescribed initially.. I am on a Fentanyl patch, 100 mcg/hr (started at 25 mcg years ago, but as time went on, I have needed more to cover my baseline pain) and dilaudid 2 to 4 mg every 4 hrs (I don't use it this often on a normal day, but during a full blown infection, I do take my break through meds) as needed. I take 1200 mg ibuprofen a day....there have been times when I have been put on a short course of steroids when the inflammation is severe and that helps too.

Again, it took awhile to find the right medications so that I could function without extreme pain and we tried many drug combinations before settling on the ones above. They were last ditch efforts to control my pain.

I feel bad for those of you who aren't getting anywhere with your pain issues and am shocked that there are docs who won't attribute chronic pain to CF. It makes sense that at least some of the pain is related, we are constantly inflamed and fighting chronic infections. For my pulmo, it was a no brainer....lucky for me.

Jenn 40 w/CF

 

[JustDucky]

To Matt....I have been on pain meds chronically for years, so I am on higher doses than what would be prescribed initially.. I am on a Fentanyl patch, 100 mcg/hr (started at 25 mcg years ago, but as time went on, I have needed more to cover my baseline pain) and dilaudid 2 to 4 mg every 4 hrs (I don't use it this often on a normal day, but during a full blown infection, I do take my break through meds) as needed. I take 1200 mg ibuprofen a day....there have been times when I have been put on a short course of steroids when the inflammation is severe and that helps too.

Again, it took awhile to find the right medications so that I could function without extreme pain and we tried many drug combinations before settling on the ones above. They were last ditch efforts to control my pain.

I feel bad for those of you who aren't getting anywhere with your pain issues and am shocked that there are docs who won't attribute chronic pain to CF. It makes sense that at least some of the pain is related, we are constantly inflamed and fighting chronic infections. For my pulmo, it was a no brainer....lucky for me.

Jenn 40 w/CF

 

[JustDucky]

Juniper...I am so glad that there are studies being done on this! I would be very interested on the findings....As far as debilitating pain, I find that it is most severe with infections and I can't do anything whenever that happens, even with pain meds on board. The housework doesn't get done, my pain interferes with that and I just don't have energy either. I basically hole up at home until things get better, I am no mood to go out and do shopping or run errands....lucky for me I have help whenever I feel that way. When pain gets in the way of daily life, it is debilitating and frustrating....I just have to be patient and let the IV's work to reduce my infections and inflammation so that I can feel more like my normal self (I still have pain every day, but it is at least manageable, not out of control)

Jenn 40 w/CF

 

[JustDucky]

Juniper...I am so glad that there are studies being done on this! I would be very interested on the findings....As far as debilitating pain, I find that it is most severe with infections and I can't do anything whenever that happens, even with pain meds on board. The housework doesn't get done, my pain interferes with that and I just don't have energy either. I basically hole up at home until things get better, I am no mood to go out and do shopping or run errands....lucky for me I have help whenever I feel that way. When pain gets in the way of daily life, it is debilitating and frustrating....I just have to be patient and let the IV's work to reduce my infections and inflammation so that I can feel more like my normal self (I still have pain every day, but it is at least manageable, not out of control)

Jenn 40 w/CF