Unfortunately I do have chronic joint and muscle pain. In answer to your questions:
1.) I have another condition that exacerbates joint/muscle pain. Years ago, doctors thought that I had fibromyalgia but that diagnosis has been changed as of a few years ago. I have Ehlers-Danlos syndrome which is an inherited condition that makes my joints slip and dislocate easily. It is a collagen deficiency of sorts, makes my ligaments super stretchy. Pain is common as a result.
I also have inflammatory problems with my joints, the theory is that my chronic lung infections play a role in that. I tend to believe this, every time I get an exacerbation, my joints hurt that much more and are actually tender to touch. My muscles hurt, especially those around my chest area....perhaps that is from strain from coughing.
2.) I use a number of things to treat my pain...I guess it depends on how bad it is. I am on pain medication (Fentanyl and dilaudid for breakthrough pain) as the pain is pretty bad without these.. These medications were last ditch efforts to control the pain, my daily life was very impacted from the suffering. Simply getting out of bed hurt. I also am on Ibuprofen daily to help with the inflammatory aspects which I believe helps as well. Non medication therapies include hot showers as hot as I can stand them, heating pads, ice packs at times, listening to relaxing music, massage etc.....
3.)There are a few things that makes things worse for me. For one, if I over do things, or over exert myself, I might not pay for it immediately, but I certainly feel it the next day. Sometimes I don't want to slow any body down and just want to keep up with their pace when I know I should be careful and take things slowly to avoid the additional pain that would likely ensue if kept going. Weather also plays a part in my pain....as I have said in other posts, it doesn't even have to be just storms, it can be any weather change. From sunny to cloudy, rainy or vice versa.....any pressure changes and I feel them. Also, as stated previously, any infection and fevers too. I am not sure about anyone else, but whenever I run a fever, the pain in my joints goes up exponentially....the higher the fever, the worse the pain is. I call this the "ache of doom"
4.) Unfortunately, joint pain has plagued me since early childhood. I dislocated my knee when I was 8 by simply playing kickball. I went to kick the ball and down I went. As long as I can remember, I have had aches and pains....doctors back then attributed this to growing pains and such. CF wasn't even in the picture then as I wasn't diagnosed with that until I was 33.
5.)I absolutely believe part of my pain is related to CF....like I said, any exacerbations always increases my pain. I also believe that some of the medications to treat my infections also causes joint pain, Merrem is definitely on that list. Years ago before I became allergic to the quinolones (Cipro, Levaquin), I would always have knee pain whenever I was on these drugs (I was on them frequently for UTI's....again well before my CF dx)
From what I have read and seen on this board, we are definitely not alone with these pain issues....further research into this would be so beneficial and perhaps more doctors would walk away a bit more educated regarding pain and pain control associated with CF. I can't tell you how many times I have been brushed off, accused of being a hypochondriac, depressed, overworked, or worse, being a drug seeker when all I wanted were answers and relief. Luckily, I found doctors who listened to me but I know that some of you aren't so lucky in that department.
In the past, I have been under medicated as well for fear of the medication interfering with my breathing. But because I was in so much pain to even breathe, I did not take deep breaths which was counter productive in that I developed a whopping pneumonia...if they had properly medicated me, my breathing would have been more efficient and deeper and perhaps I wouldn't have gotten that nasty pneumonia. I know that they have to watch for respiratory depression, but leaving someone in extreme pain does great harm mentally and physically. It is a known fact that people do not heal as well from surgery if their pain isn't well controlled (too much stress hormones wind up in circulation, impedes healing). Where is all of this leading? Pain control should be a part of clinic visits as well...it seems that many people with CF could benefit from pain specialists to help live better lives..
I hope I have answered your questions, but if you have anymore, please feel free to ask more <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn 40 w/CF
