I am a 33 cfer and have done well up until this last year and a half. I am pretty resistant to antibiotics and am waiting a lung transplant. Obviously, the decline in lung function is uncomfortable, but the achiness in my body (due to infection) is really bad. Does anyone have any suggestions other than tylenol or ibuprofen?
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Achiness
- Thread starter anonymous
- Start date
i don't have anything new to suggest... i usually take ibuprofen and such - in large doses, since i've gotten pretty much immune to normal doses. and it sort of knocks me out a bit, i take a nap, and then it's better. not the best way, though, because i overdose. so don't do that.
Im a CFer in Iceland and lately I have gotten many of those 'achiness' symptoms.. usually resulting in my putting a bunch of clothes on.. but a hot water bottle and a little bit of ibufen somtimes works.. In iceland we have 'Panodil' which is very nice and sooths especially if put in hot water and drink it as tea.. hot baths or showers often help too <img src="i/expressions/face-icon-small-smile.gif" border="0">good luck
I don't have anything to add either, really. I usually take Tylenol or Ibuprofen but that only offers marginal help. Hot baths or showers, nor any of the new age remedies seem to do much either (nevermind the expense of the latter). Ironically, participating in activities that serve to remind me of how achy I really am, seems to help by taking my mind off of the 'aching' and focusing on the doing. The other thing that puzzles me is that not only am I aching right this very instant, but that only one side of my neck aches, along with my right leg and left arm?? Of course I've already taken into account all of the extraneous factors, ie weather, previous activities, did I sleep wrong etc etc... There's nothing about CF that surprises me anymore ;-)
I've had achiness all over since I was about 15 (I';m 21 now), and my doctor ran a blood test to check for arthritis. It came back negative, but she perscribed me Vioxx and it works really well w/ relieving all the achiness. The ibuprofen, et al. didn't really cut it, but this does, and it's great.
I am not sure what everyone else means by achiness, but i know when i get achy, it is almost like the kind of pain you get in your arms and legs( and sometimes all over) that you experience when you have the flu. These pains come with a very low grade temp. of maybe 99.4 or a bit higher. This didnt start happening to me till i got b.cepacia. I use tylenol only , and thank God it does help. ~ Diane
I have had the same achiness since I was 10...I am now 30. My docs have now considered it a form of arthritis. For years regular tylenol was ok..then ibuprofen...then had to go to prescription ibuprofen...when I hit my early 20s...had to go to celebrex....took it for few years..now I'm at the point where nothing else works except for prednisone. My "achiness" gets to the point of not being able to move...is really bad. I also get a low grade fever with mine...thats usually how I know I'm getting a "flare up". Like I said...I've had it for so long now..the older I get the worse it gets....Dea
It can be either. I recently found that I have reactions to Avelox which is an antibiotic given to me for my sinuses. It created a "stiff neck" type feeling with some burning sensation. It was quite annoying. I have other aches & pains to that are both infection related & just plain normal. Sometimes its really hard to tell the cause because rain makes me hurt & causes me to cough a lot so I dont always know if its an infection brewing or not until a culture is done.
Are you getting O2 readings throughout the night? Lack of oxygen to muscles can cause them to ache later, I believe.
I've experienced lots of these, especially this hospital stay (and a couple of others). The fact it seems (admittedly, subjectively, since I haven't reliably checked) correlated to use of IV antibiotics, rather than severity of illness or other factors, makes me suspect I'm reacting to them, rather than infection in general. Is anyone on here using Meropenem, Amikacin, Tobramycin or Aztreonam?
Get something stronger than Ibuprofen if you need it. Better to face the (pretty minor, if well-managed) risk of addiction to, say, codeine than live in chronic, quality-of-life sapping pain. Insist on it being managed if the docs are giving you a workaround. I'd argue it's more the duty of a physician to help alleviate suffering than extending life, even.
I've experienced lots of these, especially this hospital stay (and a couple of others). The fact it seems (admittedly, subjectively, since I haven't reliably checked) correlated to use of IV antibiotics, rather than severity of illness or other factors, makes me suspect I'm reacting to them, rather than infection in general. Is anyone on here using Meropenem, Amikacin, Tobramycin or Aztreonam?
Get something stronger than Ibuprofen if you need it. Better to face the (pretty minor, if well-managed) risk of addiction to, say, codeine than live in chronic, quality-of-life sapping pain. Insist on it being managed if the docs are giving you a workaround. I'd argue it's more the duty of a physician to help alleviate suffering than extending life, even.
I've taken merropenum and aztreonam. They work for about 2 weeks. I am very resistant. I am achy most of the time , but I won't take codeine or anything. It completely surpresses my cough, stops my bowels from moving and makes me so lathargic. Also, the pain isn't so bad, it's just like having the flu. It makes you feel crummy but you're not in severe pain.
In some ways, that's arguably worse. Severe pain will make you miserable for a short time, until you break down and deal with it (assuming it can be treated, which is not always true). Whereas, a consistent experience of flu-like symptoms will make you miserable all the freakin' time, but aren't necessarily painful enough that you'll insist on treating them. I believe such "comparatively small" annoyances are key to sapping a person's will to live and ruining their quality of life, and should be treated <b>at least</b> as aggressively as the big problems.
What other medications have you tried, if you don't mind me asking?
What other medications have you tried, if you don't mind me asking?
Gosh, It is so strange that so many of us (with varying degrees of lung function) go through the same thing. My hips and knees ache me constantly. I cant even sleep on my side now because I wake up in so much pain in my hips. My back hurts, right now my elbows hurt... As far as I know, it isn't from an infection because my last cultures were "normal flora' I do sometime s get like a fire ant burning feeling in all my joints right before I get sick but this pain is different. This pain makes me want to wrap my whole body up in a real supportive ace bandage..
I take a gram of Advil and sometimes hot baths, nothing really works, sometimes if I am lucky it takes the edge off. I do have osteoporosis so I am assuming that that is where my pain is comming from. I am not really looking forward to the rest of my life and living with this..... I am hoping they can give me something to help releive the pain.
I go to my new CF Clinic on Tuesday so I will see what he says.
Jennifer
32 w/ CF and Addison's
I take a gram of Advil and sometimes hot baths, nothing really works, sometimes if I am lucky it takes the edge off. I do have osteoporosis so I am assuming that that is where my pain is comming from. I am not really looking forward to the rest of my life and living with this..... I am hoping they can give me something to help releive the pain.
I go to my new CF Clinic on Tuesday so I will see what he says.
Jennifer
32 w/ CF and Addison's