Joint Pain

[jessykt]

I'm in A LOT of pain. Most of you mention joint pain, which I have, but in the very first post you mentioned flu-like symptoms and that is EXACTLY how I feel. I asked my dr about it and she mentioned the plaqunel (spelling???), but it may have a cross reaction related to Levequin, so I have to wait and see the allergy dr first (reaction to Levequin IV).

This has been going on for so very long, and my dr said they are seeing more people in pain like this (which was comforting). But right now I'm taking Percoset, which we all know is not good for the gut. OTC drugs don't work.

I saw an arthritis dr who sent me to physical therapy and that was the best thing I could have ever done with my knees. But this general over all pain is baffling. It isn't joint specific.

Any suggestions?

 

[jessykt]

I'm in A LOT of pain. Most of you mention joint pain, which I have, but in the very first post you mentioned flu-like symptoms and that is EXACTLY how I feel. I asked my dr about it and she mentioned the plaqunel (spelling???), but it may have a cross reaction related to Levequin, so I have to wait and see the allergy dr first (reaction to Levequin IV).

This has been going on for so very long, and my dr said they are seeing more people in pain like this (which was comforting). But right now I'm taking Percoset, which we all know is not good for the gut. OTC drugs don't work.

I saw an arthritis dr who sent me to physical therapy and that was the best thing I could have ever done with my knees. But this general over all pain is baffling. It isn't joint specific.

Any suggestions?

 

[dbsholes]

I had significant joint pain from ages 13-18 but nothing that could be firmly diagnosed. I had a miserable five years, bleeding ulcers due to too many NSAIDs, time on Plaquenil which effected my vision, etc. Then it pretty much disappeared for 25+ years.

Now, within the past four months, at age 44, it has returned with a vengeance! One of the above posts mentioned every joint in their body hurt: That's me as well. Some else mentioned flu-like aches and pains: that's me too. There have been days in recent months when I simply went back to bed, or when I had to scoot down the stairs on my butt, and a lot of sitting around hurting and taking WAY too many NSAIDs waiting for the stomach bleeding to begin again. I have begun to wonder if I will be able to continue to enjoy my every-other week with my 11 year old daughter. I have begun to wonder if I will be able to continue living alone.

This is serious stuff.

Yesterday - YESTERDAY - I was seen by a rheumatologist at Albany Medical Center (NY) who met with me for over and hour and then ordered about thirty x-rays and twelve vials of blood drawn. I already know what the result will be - that I show symptoms of a variety of inflamatory conditions, but nothing singular that can be nailed down. For the moment they have put me on 10mgs of Prednisone until the bloodwork and radiographs have been reviewed and I return for a followup visit.

I can handle the lung problems because they can be controlled; I can handle the digestive problems because they are treatable and largely within my control; I can handle diabetes because it can be monitored and controlled. I CANNOT handle chronic pain of an unknown origin that is not controllable.

My phone number is 303-882-6070. I would really like to talk to anyone who is having this problem. There seem to more and more of us who are having this problem, but the cf establishment still does not seem to have much knowledge about what may be going on. I think it's time to change this.

David Sholes
Bennington Vermont
303-882-6070.

 

[dbsholes]

I had significant joint pain from ages 13-18 but nothing that could be firmly diagnosed. I had a miserable five years, bleeding ulcers due to too many NSAIDs, time on Plaquenil which effected my vision, etc. Then it pretty much disappeared for 25+ years.

Now, within the past four months, at age 44, it has returned with a vengeance! One of the above posts mentioned every joint in their body hurt: That's me as well. Some else mentioned flu-like aches and pains: that's me too. There have been days in recent months when I simply went back to bed, or when I had to scoot down the stairs on my butt, and a lot of sitting around hurting and taking WAY too many NSAIDs waiting for the stomach bleeding to begin again. I have begun to wonder if I will be able to continue to enjoy my every-other week with my 11 year old daughter. I have begun to wonder if I will be able to continue living alone.

This is serious stuff.

Yesterday - YESTERDAY - I was seen by a rheumatologist at Albany Medical Center (NY) who met with me for over and hour and then ordered about thirty x-rays and twelve vials of blood drawn. I already know what the result will be - that I show symptoms of a variety of inflamatory conditions, but nothing singular that can be nailed down. For the moment they have put me on 10mgs of Prednisone until the bloodwork and radiographs have been reviewed and I return for a followup visit.

I can handle the lung problems because they can be controlled; I can handle the digestive problems because they are treatable and largely within my control; I can handle diabetes because it can be monitored and controlled. I CANNOT handle chronic pain of an unknown origin that is not controllable.

My phone number is 303-882-6070. I would really like to talk to anyone who is having this problem. There seem to more and more of us who are having this problem, but the cf establishment still does not seem to have much knowledge about what may be going on. I think it's time to change this.

David Sholes
Bennington Vermont
303-882-6070.

 

[TheAmazingBD]

I AGREE! A study is needed!
Although I am devastated that anyone else is experiencing pain like mine, I am glad to hear I am not alone.
Does anyone know how to go about presenting this case study to the CF Community of physicians???

 

[TheAmazingBD]

I AGREE! A study is needed!
Although I am devastated that anyone else is experiencing pain like mine, I am glad to hear I am not alone.
Does anyone know how to go about presenting this case study to the CF Community of physicians???

 

[abnormal]

I'll second that motion! A study is is definitely needed.
I've been to 7 doctors and counting over the past several months to deal with joint and muscle pain and NO ONE has an answer as of yet... All my tests come back good and on paper I should be fine, now granted I have more then CF cooking there is no explanation for my chronic pain and it is to the point I can't bear to due vest treatments... Maybe that will spark some interest from the CF doc to dig a little deeper but I won't get my hopes up... At the CF clinic I go to they seem to focused on my PFT's and weight and not my body as a whole and just overlook the pain issue and think my GP should handle it or something so they tend to kick the can...
I'm glad to know I'm not the only one out there with the issue but it is obvious to me that the is some correlation to CF and chronic pain. Our bodies are chronically inflamed and I would have to imagine the older we get the more likely it is to spread from our lungs and organs to other parts of the body. (Could it be that simple?)
All the blood work & tests they preform, for the most part, have standards that are based on the averages of normal people and from a medical stand point we all know that is far from our case...
Well at any rate I hope we can push the issue enough to see a study preformed and get the ball rolling on solving an answer to all of this and I'll keep my up quest for relief, leaving no stone unturned!

Abnormal,
------------------
36w/CF

 

[abnormal]

I'll second that motion! A study is is definitely needed.
I've been to 7 doctors and counting over the past several months to deal with joint and muscle pain and NO ONE has an answer as of yet... All my tests come back good and on paper I should be fine, now granted I have more then CF cooking there is no explanation for my chronic pain and it is to the point I can't bear to due vest treatments... Maybe that will spark some interest from the CF doc to dig a little deeper but I won't get my hopes up... At the CF clinic I go to they seem to focused on my PFT's and weight and not my body as a whole and just overlook the pain issue and think my GP should handle it or something so they tend to kick the can...
I'm glad to know I'm not the only one out there with the issue but it is obvious to me that the is some correlation to CF and chronic pain. Our bodies are chronically inflamed and I would have to imagine the older we get the more likely it is to spread from our lungs and organs to other parts of the body. (Could it be that simple?)
All the blood work & tests they preform, for the most part, have standards that are based on the averages of normal people and from a medical stand point we all know that is far from our case...
Well at any rate I hope we can push the issue enough to see a study preformed and get the ball rolling on solving an answer to all of this and I'll keep my up quest for relief, leaving no stone unturned!

Abnormal,
------------------
36w/CF

 

[Melly527]

I couldn't agree more David, and you hit the nail on the head with why going without a diagnosis/cause is mentally SO FRUSTRATING!!!

Just a few days ago I left my rheumatologist's office in tears because he came right out and said that he does not see the point in diagnosing me/finding out what is causing all of my symptoms because I can only be treated with a few medications (DMARDs) so it "doesn't matter." Out of all the blood tests I've had done, I have had both some abnormal and normal results, so I understand that I don't fit in 'a box' perfectly, but I know that I have enough puzzles pieces to figure this out (there's definitely something autoimmune going on.) To him a diagnosis may not be important, but it feels like he's taking power away from me to make my own choices about my care. Right now I'm in the process of seeking a second opinion.

Hopefully one day we'll all get answers....and relief!!!
---------------
Mel 31 w/CF

 

[Melly527]

I couldn't agree more David, and you hit the nail on the head with why going without a diagnosis/cause is mentally SO FRUSTRATING!!!

Just a few days ago I left my rheumatologist's office in tears because he came right out and said that he does not see the point in diagnosing me/finding out what is causing all of my symptoms because I can only be treated with a few medications (DMARDs) so it "doesn't matter." Out of all the blood tests I've had done, I have had both some abnormal and normal results, so I understand that I don't fit in 'a box' perfectly, but I know that I have enough puzzles pieces to figure this out (there's definitely something autoimmune going on.) To him a diagnosis may not be important, but it feels like he's taking power away from me to make my own choices about my care. Right now I'm in the process of seeking a second opinion.

Hopefully one day we'll all get answers....and relief!!!
---------------
Mel 31 w/CF

 

[Beccamom]

My daughter isin the intermediate test result group regarding CF, so I see why not getting a diagnosis is so frustrating. It is affecting my daughter's care as far as her lungs. With what I think is CF treatment (Vest, Hypertonic Saline, IV antibiotics as needed) her FEV 1 up from 55% to 100% in one year.
As for the joint pain some of you have described the pain starting as teenagers. My 12 year old daughter had chronic joint pain for about 2 years which correlated with being constantly sick. Now she had sinus surgery for impacted sinuses, and bronchoscopy which cleaned out mucus plugs. Since this procedure she has periods of weeks between illnesses and we have noticed that when she is well she has no joint pain.
Her Rheumatologist was sympathetic and explained what many of you seem to experience. He explained that chronic infection causes chronic inflammation, which intern inflames the joints and causes pain. So what we are doing is Naproxen as soon as the joint pain begins followed by adoctor's appointment to figure out where the current infection is (lungs, sinus, ears). Then when the pain stops, but no shorter than 2 weeks we decrease to 1 week as long as she is pain free we stop the medicine until the next infection.
Thank you all for sharing. I hope this medicine regiment may help some of you.

 

[Beccamom]

My daughter isin the intermediate test result group regarding CF, so I see why not getting a diagnosis is so frustrating. It is affecting my daughter's care as far as her lungs. With what I think is CF treatment (Vest, Hypertonic Saline, IV antibiotics as needed) her FEV 1 up from 55% to 100% in one year.
As for the joint pain some of you have described the pain starting as teenagers. My 12 year old daughter had chronic joint pain for about 2 years which correlated with being constantly sick. Now she had sinus surgery for impacted sinuses, and bronchoscopy which cleaned out mucus plugs. Since this procedure she has periods of weeks between illnesses and we have noticed that when she is well she has no joint pain.
Her Rheumatologist was sympathetic and explained what many of you seem to experience. He explained that chronic infection causes chronic inflammation, which intern inflames the joints and causes pain. So what we are doing is Naproxen as soon as the joint pain begins followed by adoctor's appointment to figure out where the current infection is (lungs, sinus, ears). Then when the pain stops, but no shorter than 2 weeks we decrease to 1 week as long as she is pain free we stop the medicine until the next infection.
Thank you all for sharing. I hope this medicine regiment may help some of you.

 

[kmhbeauty]

I too get the very bad joint paint here and there. I was in bed a couple of days ago for three days in major pain! I called my cf doctor and the only thing they told me was "take pain medicine" Well how are we supposed to deal with the pain and our daily lives if we cant get out of bed for days and the pain medicine is not strong enough! This stinks!!! I have had two episodes of major joint pain. One was right after sinus surgery and the other when I did not get much sleep and did not have enough warm clothes on during the day and night because of moving. I do not take CF medicine, so it is not medicine that is doing this. I believe it is from being run down and a low immune system. I am taking fish oil and turmeric (a spice in pill form). Do some research on those! They really help me if taken daily.

 

[kmhbeauty]

I too get the very bad joint paint here and there. I was in bed a couple of days ago for three days in major pain! I called my cf doctor and the only thing they told me was "take pain medicine" Well how are we supposed to deal with the pain and our daily lives if we cant get out of bed for days and the pain medicine is not strong enough! This stinks!!! I have had two episodes of major joint pain. One was right after sinus surgery and the other when I did not get much sleep and did not have enough warm clothes on during the day and night because of moving. I do not take CF medicine, so it is not medicine that is doing this. I believe it is from being run down and a low immune system. I am taking fish oil and turmeric (a spice in pill form). Do some research on those! They really help me if taken daily.

 

[TheAmazingBD]

I took it upon myself to contact the Cf research Center in my area to find out how I would go about starting a research study. I will report back asap! May everyones joints feel good<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[TheAmazingBD]

I took it upon myself to contact the Cf research Center in my area to find out how I would go about starting a research study. I will report back asap! May everyones joints feel good<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kmhbeauty]

Thank you Theamazingbd!! I was thinking about my joint pain and I believe my flair ups have something to do with being cold. When I have sinus surgery, I always wake up super cold. The night I did not have much blankets because of moving, cold again! I think being cold for an extended period of time is what is causing my flair ups.

 

[kmhbeauty]

Thank you Theamazingbd!! I was thinking about my joint pain and I believe my flair ups have something to do with being cold. When I have sinus surgery, I always wake up super cold. The night I did not have much blankets because of moving, cold again! I think being cold for an extended period of time is what is causing my flair ups.

 

[MusicalCFGirl]

That completely sucks!
I get pain too but I know what the cause is. Unfortunatly I am 21 with osteoporosis because of my past diet chooses and because I was on huge doses of prednisone (for aspergillous) for a long time and recently just got off it by decreasing the dosage over time.
Are you taking calcium and vit D supplements? Has the doctor requested for bone scans??

 

[MusicalCFGirl]

That completely sucks!
I get pain too but I know what the cause is. Unfortunatly I am 21 with osteoporosis because of my past diet chooses and because I was on huge doses of prednisone (for aspergillous) for a long time and recently just got off it by decreasing the dosage over time.
Are you taking calcium and vit D supplements? Has the doctor requested for bone scans??