I am new to this website but very experienced when it comes to chronic illness, especially Cystic Fibrosis. I am trying to be proactive with my health & join groups for support etc. I have recently joined one in-person group in my hometown for people with chronic illness who wish to incorporate Mindfulness into their daily lives & also follow some CF blogs & have now joined a couple of forums like this one, which seems great!
Listen, I could tell you about
myself all day but I won't put you through all of that. I will offer pertinent information to my topic of discussion but I'll spare you all of my gory details ;)
So, I am a 33 year-old female who was diagnosed with CF at birth, after becoming very ill. I have Double DeltaF508 mutation. I have all the glorious side illnesses that can accompany CF such as CF-related diabetes, CF arthritis, multiple sinus surgeries (20 to be exact), breathing issues, have tune-ups a lot etc. My current issue I am struggling with is the dreaded topic that doctors do NOT want to address, in my experience, and that is pain management. What I would love for you to share with me is if you experience chronic pain like me, who controls/manages that aspect of your health?? I'm in a pickle because I currently have one doctor prescribing my pain medication, which is Oxycodone & Methadone for pain control. This doctor is not an expert in pain management by any means and she started prescribing it for me with the intention of me getting off of it and tapering down but now, as years have passed, my pain has other plans in store & has become way more chronic than just acute.
This doctor wants to meet with me this week so we have an appointment set up & I just have a feeling she is going to say this is getting to be too much for her to handle & that I need to see an actual doctor trained in this area. I go to a big University so you'd think that would be common, right? Well, not so easy. I had used our Pain Management Clinic in the past for low back pain & they gave me a couple epidurals & then said there was nothing else they could do for me & in addition, did not have anything to offer for my head/sinus pain that I suffer from daily as I have very infected sinuses. And this pain clinic does NOT believe in the use of narcotics in controlling pain.
And my CF doctor believes I have pain and doesn't doubt that but he also tends to say he is not a pain management specialist and is not comfortable being in charge of that aspect even though the pain in part, is due to my CF. My CF dr. is pretty much unofficially my primary care doctor so I don't have one of those I can turn to. So now what?? I do feel like it's feasible to try & take as few pain medications as possible so that in the future, they still work for me as I will most likely get more & more sick & will always need some form of pain medication.
I also believe in using other methods to help control my pain like mindfulness meditation, breathing, rest, ice packs etc. but those only take me so far. When I'm at work for a few hours each week, I can't be taking constant breaks due to the pain & that's when my pain medicine is so beneficial. Or when I need to do treatments but do not have the energy or wellness, pain meds. allow me to get through that.
So my question is: now what??? Who is in charge of your pain management, if needed?? What do you all think is reasonable? I would appreciate any and all information/suggestions you may have on this topic as I think it's becoming increasingly difficult and worrisome on the providers side as there's so many addicts out there. I'm very aware of that but I also recognize that I can only suffer so much before it becomes unhelpful NOT to take something for it. Oh and just in case you're wondering, I do not live in a state where Medical Marijuana has been legalized.
Thanks so much for reading & responding! I look forward to hearing your thoughts & experiences.
Hi Molly, I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thanks.
Post Edited By Moderator (straydog) : 10/2/2016 6:13:37 PM (GMT-6)