Muscle and Joint Pain/severe exhaustion

[abnormal]

I too am at my wits end with chronic joint and muscle pain! For years I complained about the the problem to my CF doc and he told me to exercise more... Hmmm, That didn't help and its kinda of hard to workout when you feel like crap. They've tested me for god knows what and still no answers and I've had more or less just suck it up and now things are worse and I'm hurting almost 24/7! I'm going for a "second" opinion next week... (fingers crossed)

Abnormal
36w/CF

 

[abnormal]

I too am at my wits end with chronic joint and muscle pain! For years I complained about the the problem to my CF doc and he told me to exercise more... Hmmm, That didn't help and its kinda of hard to workout when you feel like crap. They've tested me for god knows what and still no answers and I've had more or less just suck it up and now things are worse and I'm hurting almost 24/7! I'm going for a "second" opinion next week... (fingers crossed)

Abnormal
36w/CF

 

[JennifersHope]

The longer I am on the medication, the more my body is getting used to it. The pain is starting to lessen a bit, still there but tolerable atm.

Thanks so much, I am sorry for anyone who is stuck with pain.. Not any fun

 

[JennifersHope]

The longer I am on the medication, the more my body is getting used to it. The pain is starting to lessen a bit, still there but tolerable atm.

Thanks so much, I am sorry for anyone who is stuck with pain.. Not any fun

 

[JennifersHope]

The longer I am on the medication, the more my body is getting used to it. The pain is starting to lessen a bit, still there but tolerable atm.

Thanks so much, I am sorry for anyone who is stuck with pain.. Not any fun

 

[Daisymae1997]

Does anyone besides me have a terrible time getting "narcotics" to treat the pain. I've been on and off loracet numerous times over the past 20 years for sinus surgeries and kidney stones. Yet every time I tell them that what I have (ibuprofen or aleve) is not working, the cf doc; the ent, and the arthritis doc, they start going on about worry about me getting addicted to anything stronger. Once they've managed the pain, I get off the narcotics. Many times for over a year at a time.

Now I see here than some you get percocet. If I asked for that, I think they'd throw me into drug treatment. I asked for 2 narcos, (vicoden with less tylenol) a day during my last hospitalization because I get headaches from the Tobra. That didn't take the pain away, or even put a dent in it. Even when the nurses asked for more, they would not order it. I have never been addicted to anything other than coke-a-cola, so I don't understand why they assume I will get addicted. Any ideas anyone?

 

[Daisymae1997]

Does anyone besides me have a terrible time getting "narcotics" to treat the pain. I've been on and off loracet numerous times over the past 20 years for sinus surgeries and kidney stones. Yet every time I tell them that what I have (ibuprofen or aleve) is not working, the cf doc; the ent, and the arthritis doc, they start going on about worry about me getting addicted to anything stronger. Once they've managed the pain, I get off the narcotics. Many times for over a year at a time.

Now I see here than some you get percocet. If I asked for that, I think they'd throw me into drug treatment. I asked for 2 narcos, (vicoden with less tylenol) a day during my last hospitalization because I get headaches from the Tobra. That didn't take the pain away, or even put a dent in it. Even when the nurses asked for more, they would not order it. I have never been addicted to anything other than coke-a-cola, so I don't understand why they assume I will get addicted. Any ideas anyone?

 

[Matt31]

Im in the same boat here. i have been asking.for.help for over three years now. they all look at me like im sum drugged who just wants more. its to the point where its effecting my relationship with my feience. pastime i.was in hospital. i lost it an started crying while the doc was in my room. saying why won't any of u listen to me. i hurt and has taken of my life an can't get help from so called docs that don't care about a persons health.even told them as was at the point of giving up. they answered me by saying sorry Sr i can't help you

 

[Matt31]

Im in the same boat here. i have been asking.for.help for over three years now. they all look at me like im sum drugged who just wants more. its to the point where its effecting my relationship with my feience. pastime i.was in hospital. i lost it an started crying while the doc was in my room. saying why won't any of u listen to me. i hurt and has taken of my life an can't get help from so called docs that don't care about a persons health.even told them as was at the point of giving up. they answered me by saying sorry Sr i can't help you

 

[JustDucky]

They shouldn't just say they can't help....they can! Perhaps they should refer you to pain management to help with your pain. Unfortunately, blood tests come back okay but the pain is very real....docs basically have to go on what you say in this case. Have you been to a rheumatologist who is familiar with CF related arthritis? If they send you to one, make sure that they know what this is or it will be a waste of time to go there..trust me.

I hope that you get somewhere where they will take you seriously and help with your pain.
Hang in there...
Jenn 40 w/CF

 

[JustDucky]

They shouldn't just say they can't help....they can! Perhaps they should refer you to pain management to help with your pain. Unfortunately, blood tests come back okay but the pain is very real....docs basically have to go on what you say in this case. Have you been to a rheumatologist who is familiar with CF related arthritis? If they send you to one, make sure that they know what this is or it will be a waste of time to go there..trust me.

I hope that you get somewhere where they will take you seriously and help with your pain.
Hang in there...
Jenn 40 w/CF

 

[ryry11]

I have been declared allergic to all fluroquinalones, because of the joint pain they cause. I will not take them, because they caused pain so bad that I couldn't walk within hours of taking the first dose, and it would last up to a few months after the abx were done. It includes Cipro, Avelox and Levaquin. They worried about my Achille's Tendon breaking, so I'm now considered allergic.
If it started after starting any quinalones, talk to your doctor. Cipro pain is real, the FDA has a black-box warning on it now.

 

[ryry11]

I have been declared allergic to all fluroquinalones, because of the joint pain they cause. I will not take them, because they caused pain so bad that I couldn't walk within hours of taking the first dose, and it would last up to a few months after the abx were done. It includes Cipro, Avelox and Levaquin. They worried about my Achille's Tendon breaking, so I'm now considered allergic.
If it started after starting any quinalones, talk to your doctor. Cipro pain is real, the FDA has a black-box warning on it now.

 

[Matt31]

I had a catscan done they found that my spine was alot smaller at the bottom then it should be which in return said it could cause nerve problem but surgery would't be justified. so they sent me to a pain clinic and i wasn't even in there for more than 5 mins. they told me they didn't believe my spine was causing the pain an was like that's all we can do for u. i was so pissed! i told them that this is a pain clinic right? so u do handle more than back problems am i right? he replied back sayin yes but this is all we can do for u! i said what am i suppose to keep doing its taking over my life!!! he said sorry an your free to go now!!""

 

[Matt31]

I had a catscan done they found that my spine was alot smaller at the bottom then it should be which in return said it could cause nerve problem but surgery would't be justified. so they sent me to a pain clinic and i wasn't even in there for more than 5 mins. they told me they didn't believe my spine was causing the pain an was like that's all we can do for u. i was so pissed! i told them that this is a pain clinic right? so u do handle more than back problems am i right? he replied back sayin yes but this is all we can do for u! i said what am i suppose to keep doing its taking over my life!!! he said sorry an your free to go now!!""

 

[Twistofchaos]

I get muscle and joint pain directly from infection and feeling "feverish", as well as when having digestive cramps, ..as well as the hours after having to cough up a lot fe. in the morning and while doing nebuliser treatments, i think this also has to do with straining more muscles than you are aware of when coughing (but not in a good workout type of way but just tensing up and tiring them) and some sort of catabolic effects I'm not quite aware of.
Jointpain specificly can be related to a lot of things I think, also (lung)infection, specific malnutricion, linked to some level of weaker bones (osteoporosis) , medication, on and on.
For me, strangely the best thing against jointpains (and also musclepain) is to lift weight. YMMV.

 

[Twistofchaos]

I get muscle and joint pain directly from infection and feeling "feverish", as well as when having digestive cramps, ..as well as the hours after having to cough up a lot fe. in the morning and while doing nebuliser treatments, i think this also has to do with straining more muscles than you are aware of when coughing (but not in a good workout type of way but just tensing up and tiring them) and some sort of catabolic effects I'm not quite aware of.
Jointpain specificly can be related to a lot of things I think, also (lung)infection, specific malnutricion, linked to some level of weaker bones (osteoporosis) , medication, on and on.
For me, strangely the best thing against jointpains (and also musclepain) is to lift weight. YMMV.

 

[JustDucky]

Oh wow Matt! So sorry about your experience with that pain clinic....awful! Can you go elsewhere? Don't give up, I know you feel hopeless and frustrated now but keep searching until you find relief. Unfortunately there are many doctors out there who do not take pain seriously, I am surprised that a pain management doc did that to you! Like you said, they should be able to manage other types of pain and not just orthopedic stuff. Have you seen a rheumy? Again, make sure that the one you choose knows about CF and its effects on the body or it will be a waste of time. But that would be another avenue for you to persue as far as getting help for your pain. Also, not sure if you have a GP, but they can be beneficial too. Mine works closely with my pulmo regarding my pain meds and treatments, she has been invaluable.

I hope you live close enough where you can venture out....perhaps try private doctors? I actually don't go to a CF center, I go to a university but not a CF center, but my pulmo is head of the bronchiectasis study there and as well versed on CF treatment. I have been to other CF centers but was just not happy with my care and am satisfied where I am....Moral of the story, private doctors can be a good thing and certainly widens your search but check into what they know about CF before you go. I remember when I mentioned my pain to my pulmo he said, " of course it is CF related, your immune system is in overdrive and your joints suffer for it" There was no begging or trying to convince him, he knew. It made the treatment for my pain a much smoother process because of that. I hope that for you, that you find a doctor who is compassionate about your care.

Hang in there, don't give up!
Jenn 40 w/CF

 

[JustDucky]

Oh wow Matt! So sorry about your experience with that pain clinic....awful! Can you go elsewhere? Don't give up, I know you feel hopeless and frustrated now but keep searching until you find relief. Unfortunately there are many doctors out there who do not take pain seriously, I am surprised that a pain management doc did that to you! Like you said, they should be able to manage other types of pain and not just orthopedic stuff. Have you seen a rheumy? Again, make sure that the one you choose knows about CF and its effects on the body or it will be a waste of time. But that would be another avenue for you to persue as far as getting help for your pain. Also, not sure if you have a GP, but they can be beneficial too. Mine works closely with my pulmo regarding my pain meds and treatments, she has been invaluable.

I hope you live close enough where you can venture out....perhaps try private doctors? I actually don't go to a CF center, I go to a university but not a CF center, but my pulmo is head of the bronchiectasis study there and as well versed on CF treatment. I have been to other CF centers but was just not happy with my care and am satisfied where I am....Moral of the story, private doctors can be a good thing and certainly widens your search but check into what they know about CF before you go. I remember when I mentioned my pain to my pulmo he said, " of course it is CF related, your immune system is in overdrive and your joints suffer for it" There was no begging or trying to convince him, he knew. It made the treatment for my pain a much smoother process because of that. I hope that for you, that you find a doctor who is compassionate about your care.

Hang in there, don't give up!
Jenn 40 w/CF

 

[Matt31]

Well i just got out of the hospital. i talked to them bout my pain. now I've got a appt this Monday with a Rheumy. hopefully all goes well. i tried a different hospital an so far so good. Any suggestions on what all i should tell him to help understand?i think Im going to show him these feeds to help c. any other help would b great