Joint Pain

[amessofphotos]

I have chronic back pain along with migrating joint pain... without swelling. I would like to be included in any study you get put together! I also want to ask if any of you also have chronic low grade fever along with increased pain?

 

[amessofphotos]

I have chronic back pain along with migrating joint pain... without swelling. I would like to be included in any study you get put together! I also want to ask if any of you also have chronic low grade fever along with increased pain?

 

[jessykt]

I wouldn't mind a study at all-that would be helpful! I see many have joint pain, but I'm wondering how many have that with general muscle pain? Like flu pain (but it isn't the flu).

My doctor has been very supportive and receptive; she said she's seeing more of this but they don't know what the cause is. I'm on percoset. There is a drug out there but I can't take it, but she said she got one patient completely off narcotics and pain free with this other drug...

 

[jessykt]

I wouldn't mind a study at all-that would be helpful! I see many have joint pain, but I'm wondering how many have that with general muscle pain? Like flu pain (but it isn't the flu).

My doctor has been very supportive and receptive; she said she's seeing more of this but they don't know what the cause is. I'm on percoset. There is a drug out there but I can't take it, but she said she got one patient completely off narcotics and pain free with this other drug...

 

[abnormal]

Yeah, along with my joint pain I have a LOT of problems with my muscles. They ache all time... They're always as tight as guitar strings plus the occasional spasms come and go. It doesn't seem to matter how much I stretch out or work out.... They always give me problems. I very rarely run a fever and my docs are dumbfounded every time I bring it up!????

 

[abnormal]

Yeah, along with my joint pain I have a LOT of problems with my muscles. They ache all time... They're always as tight as guitar strings plus the occasional spasms come and go. It doesn't seem to matter how much I stretch out or work out.... They always give me problems. I very rarely run a fever and my docs are dumbfounded every time I bring it up!????

 

[luv2run]

I too have experienced severe joint pain! (Knock on wood, ) it hasn't happened in awhile. I've woken up in the past and both my hands were swollen beyond belief! I've had pain in my hands, my feet, my ankles, hips, elbow and shoulders. One time, i had no swelling but pain in every joint in my body - even my chest. Breathing in and out was torture...it lasted about 3 days - my rheumatologist gave me percocet and steroids. My lab work is always normal (or just very slighly elevated when the joint pain kicks in.) I am "undiagnosed" at this point - calling it inflammatory arthritis. My rheumatologist thinks that I will eventually be dx'ed with rheumatoid, as thats what he usually sees in his patients. WHAT IS THE CF CONNECTION???? Why are there so many of us with the same horrible pain? (My sister, also with cf, has the same pain!) I would participate in a study too!
Aside from the swelling/pain, I am pancratic sufficient and my Fev's are 110%.

 

[luv2run]

I too have experienced severe joint pain! (Knock on wood, ) it hasn't happened in awhile. I've woken up in the past and both my hands were swollen beyond belief! I've had pain in my hands, my feet, my ankles, hips, elbow and shoulders. One time, i had no swelling but pain in every joint in my body - even my chest. Breathing in and out was torture...it lasted about 3 days - my rheumatologist gave me percocet and steroids. My lab work is always normal (or just very slighly elevated when the joint pain kicks in.) I am "undiagnosed" at this point - calling it inflammatory arthritis. My rheumatologist thinks that I will eventually be dx'ed with rheumatoid, as thats what he usually sees in his patients. WHAT IS THE CF CONNECTION???? Why are there so many of us with the same horrible pain? (My sister, also with cf, has the same pain!) I would participate in a study too!
Aside from the swelling/pain, I am pancratic sufficient and my Fev's are 110%.

 

[dbsholes]

With the call tag of luv2run I can see why your Fev's are at 110%. I could be luv2sleep&eat which is why mine have decreased in recent years. I am 45 years old today - which is forty years beyond that which my parents were told to expect - but I'd certainly like to be in better overall heath.

So what IS the CF connection to joint pain? I see several recurring issues, but none that seem to effect all of us the same. Let's look at some:

1) Vitamin D deficiency. Vitamin D is the current "Vitamin du jour" and apparently has effects on many of our bodily systems. Vitamin D is fat soluble which means that CF patients don't absorb it well. Normal D levels in bloodwork are 30 to 100. My most recent one from early December was 11.6. Pretty low. I began on the soluble supplement Aquadeks (I had been off ADEK for about a year) and my joint pain decreased within days. Eureka! I thought. But the pain has still come and gone (as I type this my left shoulder joint is very achy) in varying severity. I'll know my current vitamin D level from last week's blood work hopefully later today.

2) Infection. When I had my first bout with joint pain in my teenage years I was regularly blowing PFTs in the 125% range. However, I DID have more sinus infections back then, which haven't been a problem in recent years.

I almost hate to say this on this site, but I've only been hospitalized for one tuneup - in 2004 - which ended up being an exacerbation due to ABPA that I probably caused when I (brilliantly) smoked some pot with my then-wife (clearly smoking of any kind is not something that I've done much of in my life, but by that point in our marriage we desperately needed SOMETHING). That 2004 time period - when I was 37 - was the most severe time of lung infection in my life. But my joints did not hurt. In fact, during the 2 hours a day when I was off IV I would leave the hospital (Albany Medical Center) and go JOGGING in nearby Washington Park. I went in with PFTs in the mid-50s, left with them in the low 80s and had them into the mid 90s within a month.

With this recent recurrence of joint pain that really hit me in September, I clearly have some low-lying infection in my lungs and am blowing in the low 80s. My Pulmonologist put me on a course of Cipro in December to "clean things out" a bit, but I don't think it did it. So perhaps systemic inflammation is playing a role at this time.

3) Medical toxicity. I have long wondered how the varied cocktails of drugs that most of us are on settle into our systems. Could this result in joint pain? Certainly. But since we're all on such a different medical regimen how would we ever figure out to what extent this is part of the joint-pain equation. One thing I can mention, for those who have seen the Cymbalta ads for arthritis pain (Cymbalta is primarily an anti-depressant) is that I have been on Cymbalta both for depression and for joint pain and it didn't help with either. I do best brain-wise on Fluoxetine (Prozac) and the only thing that really helps my pain in buffered asprin - which will eventually lead to stomach bleeding, as it did when I was a teen. Other OTC pain meds simply do not work. I LAUGH at the Aleve ads - One Aleve a day my ass!

4) Cold. My joint-pain is definitely worse when it's cold - but not just cold, cold and HUMID. But here again, when I was a teenager growing up in Colorado my joint pain hit during the summer of 1982 - a very hot and dry Colorado summer. My parents installed a hot tub later that year and the hot water always helped - but only as long as I was in it. I'd hurt again within a half hour of getting out. I have a hot tub now but with the expense of operating it and having some needed maintenance done, I'm not even bothering with it.

Lets see if we can add additional possible contributors to this list. I am printing this thread and taking it with me to my next rheumatology and pulmonology appointments. I get the feeling that my clinic doesn't even really know that joint pain is a wide-spread CF problem. My CF team never asks me about joint pain or anything like it. What about yours??

David Sholes
Bennington Vermont

45 yo; DDF508; diag. 8mos; PFTs low-mid 80s; CFRD since '04; Severe migrating joint pain

 

[dbsholes]

With the call tag of luv2run I can see why your Fev's are at 110%. I could be luv2sleep&eat which is why mine have decreased in recent years. I am 45 years old today - which is forty years beyond that which my parents were told to expect - but I'd certainly like to be in better overall heath.

So what IS the CF connection to joint pain? I see several recurring issues, but none that seem to effect all of us the same. Let's look at some:

1) Vitamin D deficiency. Vitamin D is the current "Vitamin du jour" and apparently has effects on many of our bodily systems. Vitamin D is fat soluble which means that CF patients don't absorb it well. Normal D levels in bloodwork are 30 to 100. My most recent one from early December was 11.6. Pretty low. I began on the soluble supplement Aquadeks (I had been off ADEK for about a year) and my joint pain decreased within days. Eureka! I thought. But the pain has still come and gone (as I type this my left shoulder joint is very achy) in varying severity. I'll know my current vitamin D level from last week's blood work hopefully later today.

2) Infection. When I had my first bout with joint pain in my teenage years I was regularly blowing PFTs in the 125% range. However, I DID have more sinus infections back then, which haven't been a problem in recent years.

I almost hate to say this on this site, but I've only been hospitalized for one tuneup - in 2004 - which ended up being an exacerbation due to ABPA that I probably caused when I (brilliantly) smoked some pot with my then-wife (clearly smoking of any kind is not something that I've done much of in my life, but by that point in our marriage we desperately needed SOMETHING). That 2004 time period - when I was 37 - was the most severe time of lung infection in my life. But my joints did not hurt. In fact, during the 2 hours a day when I was off IV I would leave the hospital (Albany Medical Center) and go JOGGING in nearby Washington Park. I went in with PFTs in the mid-50s, left with them in the low 80s and had them into the mid 90s within a month.

With this recent recurrence of joint pain that really hit me in September, I clearly have some low-lying infection in my lungs and am blowing in the low 80s. My Pulmonologist put me on a course of Cipro in December to "clean things out" a bit, but I don't think it did it. So perhaps systemic inflammation is playing a role at this time.

3) Medical toxicity. I have long wondered how the varied cocktails of drugs that most of us are on settle into our systems. Could this result in joint pain? Certainly. But since we're all on such a different medical regimen how would we ever figure out to what extent this is part of the joint-pain equation. One thing I can mention, for those who have seen the Cymbalta ads for arthritis pain (Cymbalta is primarily an anti-depressant) is that I have been on Cymbalta both for depression and for joint pain and it didn't help with either. I do best brain-wise on Fluoxetine (Prozac) and the only thing that really helps my pain in buffered asprin - which will eventually lead to stomach bleeding, as it did when I was a teen. Other OTC pain meds simply do not work. I LAUGH at the Aleve ads - One Aleve a day my ass!

4) Cold. My joint-pain is definitely worse when it's cold - but not just cold, cold and HUMID. But here again, when I was a teenager growing up in Colorado my joint pain hit during the summer of 1982 - a very hot and dry Colorado summer. My parents installed a hot tub later that year and the hot water always helped - but only as long as I was in it. I'd hurt again within a half hour of getting out. I have a hot tub now but with the expense of operating it and having some needed maintenance done, I'm not even bothering with it.

Lets see if we can add additional possible contributors to this list. I am printing this thread and taking it with me to my next rheumatology and pulmonology appointments. I get the feeling that my clinic doesn't even really know that joint pain is a wide-spread CF problem. My CF team never asks me about joint pain or anything like it. What about yours??

David Sholes
Bennington Vermont

45 yo; DDF508; diag. 8mos; PFTs low-mid 80s; CFRD since '04; Severe migrating joint pain

 

[JustDucky]

I too would love a study involving chronic joint pain and CF. David, you point out many things that could easily cause joint pain...I see many factors on your list that holds true with me. Vit D deficiency, check. Cold exacerbating my pain..check. And not just cold, how about weather changes? Even if it goes from cloudy to sunny and vice versa, my joint pain really kicks up. I don't even have to watch the weather report, my joints will tell me what it is going to be like outside! I also firmly believe that chronic inflammation plays a huge part (so does my pulmo) in joint pain....as I have said in my previous post, any time that I get sick, my joints become exquisitely painful to touch, I can't even have sheets on my bed when this happens. After a few days on IV's, my symptoms get better.

I have gone to rheumies for this problem, have had many tests run and they say what so many of you have written....that the tests will probably come out okay or borderline and that there are only a handful of drugs that might be helpful. I have tried them all, so far the only thing that seems to help is Ibuprofen (1200 mg) and narcotics.

Maybe with a study, something more definitive will show up as far as causes and then hopefully, more targeted treatments that will actually do some good.

Jenn 40 w/CF

 

[JustDucky]

I too would love a study involving chronic joint pain and CF. David, you point out many things that could easily cause joint pain...I see many factors on your list that holds true with me. Vit D deficiency, check. Cold exacerbating my pain..check. And not just cold, how about weather changes? Even if it goes from cloudy to sunny and vice versa, my joint pain really kicks up. I don't even have to watch the weather report, my joints will tell me what it is going to be like outside! I also firmly believe that chronic inflammation plays a huge part (so does my pulmo) in joint pain....as I have said in my previous post, any time that I get sick, my joints become exquisitely painful to touch, I can't even have sheets on my bed when this happens. After a few days on IV's, my symptoms get better.

I have gone to rheumies for this problem, have had many tests run and they say what so many of you have written....that the tests will probably come out okay or borderline and that there are only a handful of drugs that might be helpful. I have tried them all, so far the only thing that seems to help is Ibuprofen (1200 mg) and narcotics.

Maybe with a study, something more definitive will show up as far as causes and then hopefully, more targeted treatments that will actually do some good.

Jenn 40 w/CF

 

[krisgabes]

Hi Julie- I'm going through the same thing right now but just in my knees. I've had that same exact all over pain in the past. I went to a rheumatologist to check for arthritis. She prescribed Celebrex which helped me immensely. It's worth talking to your doctor about.

 

[krisgabes]

Hi Julie- I'm going through the same thing right now but just in my knees. I've had that same exact all over pain in the past. I went to a rheumatologist to check for arthritis. She prescribed Celebrex which helped me immensely. It's worth talking to your doctor about.

 

[abnormal]

David, you brought up medical toxicity as possible link to some our issues and I brought that up at my last CF check-up. My doc had me wean off and on all my CF meds to see if any changed with the joint pain and muscle aches. Nothing did change but I was able to rule that out as a cause. I did bring up the long-term use of antibiotics like Cipro and Leavquin causing some kind of permanent damage but he kinda shied away from an answer on that... And since I had been off them for a few months he was sure that any toxicity from them would be out of my system by now.
Now I know we all different and have different regimes but I'd be willing to bet we all get thrown on the horse pills of Cipro, Levaquin, Bactrim, etc... at the very least a few times a year if not an IV or 2, so there could be a common thread in that aspect.
Now if there is a connection to our long-term use of the "Big Gun" drugs to fight infections we face a double-edged sword... They work great at killing off the bugs but they leave us feeling miserable! It may be something for them to starting looking into.???

 

[abnormal]

David, you brought up medical toxicity as possible link to some our issues and I brought that up at my last CF check-up. My doc had me wean off and on all my CF meds to see if any changed with the joint pain and muscle aches. Nothing did change but I was able to rule that out as a cause. I did bring up the long-term use of antibiotics like Cipro and Leavquin causing some kind of permanent damage but he kinda shied away from an answer on that... And since I had been off them for a few months he was sure that any toxicity from them would be out of my system by now.
Now I know we all different and have different regimes but I'd be willing to bet we all get thrown on the horse pills of Cipro, Levaquin, Bactrim, etc... at the very least a few times a year if not an IV or 2, so there could be a common thread in that aspect.
Now if there is a connection to our long-term use of the "Big Gun" drugs to fight infections we face a double-edged sword... They work great at killing off the bugs but they leave us feeling miserable! It may be something for them to starting looking into.???

 

[luv2run]

I had my first "swelling and pain" issue a few weeks after a course of Cipro about 2 or 3 years ago. I am not on oral antibiotics very ofter - just my Tobi. My vitamin D levels were 49 - within normal range. I do notice that this pain is mostly in cold weather ( i think always!) Very interesting to hear that you'all have the same weather/temperature experience. My rheumatololgist doesn't really think that weather plays a part? I think it does!

 

[luv2run]

I had my first "swelling and pain" issue a few weeks after a course of Cipro about 2 or 3 years ago. I am not on oral antibiotics very ofter - just my Tobi. My vitamin D levels were 49 - within normal range. I do notice that this pain is mostly in cold weather ( i think always!) Very interesting to hear that you'all have the same weather/temperature experience. My rheumatololgist doesn't really think that weather plays a part? I think it does!

 

[kmhbeauty]

I too really think ithas something to do with the cold and weather. As I stated before I am having the same joint pain in all the major joints. Knees, elbows, wrists, ect ect and I do not take any CF medicine. I take the Source CF Vitamins but thats it. I would think the CF medicine would not play a role in the joint pain but it could vary in different people, I guess.

 

[kmhbeauty]

I too really think ithas something to do with the cold and weather. As I stated before I am having the same joint pain in all the major joints. Knees, elbows, wrists, ect ect and I do not take any CF medicine. I take the Source CF Vitamins but thats it. I would think the CF medicine would not play a role in the joint pain but it could vary in different people, I guess.