Muscle and Joint Pain/severe exhaustion

[JennifersHope]

I am at a loss, and truth be told a bit overwhelmed. I have been on IVs since October something but just started a more rigorous IV schedule a little over a week ago.

Before I started treatment for the MAC and the other NTM and now the MRSA. I was feeling very, very tired. I seriously felt like I had Mono again that is how tired I was/am

Since starting the new IVs, which are not IV Cipro, Zyvox, Amikacian, and a few other IV medications not antibiotics... I am on oral Bactrim and zithromax as well. I have noticed an improvement already in my breathing which is surprising because they said not to expect one right away..


My issue is my joints hurt so badly, my muscles hurt and I am still beyond exhausted no matter how much I sleep.


I am also trying to wrap my brain around doing this rigerous of a schedule for what I am told will most likely be a year or more.. It just overwhelms me, I am doing 49 bags of fluids a week.. and I am already sick of having my port accessed all the time.

The longest I ever had a port accessed was about a month.... except when I was in the hospital.


How have any of you dealt with the emotional side of being accessed for so long and also have you experienced the joint pain? I do not take pain medications as they make me sick, I take advil. I was taking hot baths that helped somewhat but I am still get hot flash feelings and hot and cold sweats so any extreme temp drives me insane.


Any ideas how to deal?

 

[JennifersHope]

I am at a loss, and truth be told a bit overwhelmed. I have been on IVs since October something but just started a more rigorous IV schedule a little over a week ago.

Before I started treatment for the MAC and the other NTM and now the MRSA. I was feeling very, very tired. I seriously felt like I had Mono again that is how tired I was/am

Since starting the new IVs, which are not IV Cipro, Zyvox, Amikacian, and a few other IV medications not antibiotics... I am on oral Bactrim and zithromax as well. I have noticed an improvement already in my breathing which is surprising because they said not to expect one right away..


My issue is my joints hurt so badly, my muscles hurt and I am still beyond exhausted no matter how much I sleep.


I am also trying to wrap my brain around doing this rigerous of a schedule for what I am told will most likely be a year or more.. It just overwhelms me, I am doing 49 bags of fluids a week.. and I am already sick of having my port accessed all the time.

The longest I ever had a port accessed was about a month.... except when I was in the hospital.


How have any of you dealt with the emotional side of being accessed for so long and also have you experienced the joint pain? I do not take pain medications as they make me sick, I take advil. I was taking hot baths that helped somewhat but I am still get hot flash feelings and hot and cold sweats so any extreme temp drives me insane.


Any ideas how to deal?

 

[JennifersHope]

I am at a loss, and truth be told a bit overwhelmed. I have been on IVs since October something but just started a more rigorous IV schedule a little over a week ago.

Before I started treatment for the MAC and the other NTM and now the MRSA. I was feeling very, very tired. I seriously felt like I had Mono again that is how tired I was/am

Since starting the new IVs, which are not IV Cipro, Zyvox, Amikacian, and a few other IV medications not antibiotics... I am on oral Bactrim and zithromax as well. I have noticed an improvement already in my breathing which is surprising because they said not to expect one right away..


My issue is my joints hurt so badly, my muscles hurt and I am still beyond exhausted no matter how much I sleep.


I am also trying to wrap my brain around doing this rigerous of a schedule for what I am told will most likely be a year or more.. It just overwhelms me, I am doing 49 bags of fluids a week.. and I am already sick of having my port accessed all the time.

The longest I ever had a port accessed was about a month.... except when I was in the hospital.


How have any of you dealt with the emotional side of being accessed for so long and also have you experienced the joint pain? I do not take pain medications as they make me sick, I take advil. I was taking hot baths that helped somewhat but I am still get hot flash feelings and hot and cold sweats so any extreme temp drives me insane.


Any ideas how to deal?

 

[Daisymae1997]

I'm also interested in anyone who has an explanation and/or treatment for nearly constant joint and muscles pain and unending exhaustion.

Mine is something that just seems to keep getting gradually worse. I started noticing the exhaustion 10 years ago. The constant aching has been going on for something like 3 or 4 years. Finally, this year my cf doc referred me to an arthritis doc. However, the med she put me on has not helped at all yet. My cf doc refuses to believe my complaints. I'm at my wits end.

 

[Daisymae1997]

I'm also interested in anyone who has an explanation and/or treatment for nearly constant joint and muscles pain and unending exhaustion.

Mine is something that just seems to keep getting gradually worse. I started noticing the exhaustion 10 years ago. The constant aching has been going on for something like 3 or 4 years. Finally, this year my cf doc referred me to an arthritis doc. However, the med she put me on has not helped at all yet. My cf doc refuses to believe my complaints. I'm at my wits end.

 

[Daisymae1997]

I'm also interested in anyone who has an explanation and/or treatment for nearly constant joint and muscles pain and unending exhaustion.

Mine is something that just seems to keep getting gradually worse. I started noticing the exhaustion 10 years ago. The constant aching has been going on for something like 3 or 4 years. Finally, this year my cf doc referred me to an arthritis doc. However, the med she put me on has not helped at all yet. My cf doc refuses to believe my complaints. I'm at my wits end.

 

[JennifersHope]

My exhaustion has been linked to the NTM, so has my hypoxia and what was considered to be throat spasms that turned out to be "angina pain" that quickly went away when I went back on supplementary oxygen. The aches and pains came after adding the xyvox and amikicain IV. I don't know if it is the cipro iv because I was on that before.

Sometimes even the best centers can get stuck in a rut and not look outside the box.

 

[JennifersHope]

My exhaustion has been linked to the NTM, so has my hypoxia and what was considered to be throat spasms that turned out to be "angina pain" that quickly went away when I went back on supplementary oxygen. The aches and pains came after adding the xyvox and amikicain IV. I don't know if it is the cipro iv because I was on that before.

Sometimes even the best centers can get stuck in a rut and not look outside the box.

 

[JennifersHope]

My exhaustion has been linked to the NTM, so has my hypoxia and what was considered to be throat spasms that turned out to be "angina pain" that quickly went away when I went back on supplementary oxygen. The aches and pains came after adding the xyvox and amikicain IV. I don't know if it is the cipro iv because I was on that before.

Sometimes even the best centers can get stuck in a rut and not look outside the box.

 

[JustDucky]

Every time I am ill, the joint pains become pretty significant. Also, some antibiotics increase the pain as well, so it becomes a double whammy. My joint pain seems to be the worst in my hips, wrists and ankles. Opening jars becomes an ordeal as well, so I use those gripper pads which helps some. The exhaustion comes with my body fighting very hard as well as being very anemic, which doesn't help my energy levels or my breathing.

I really feel for you,I can't imagine having my port accessed all of the time....my skin would probably bubble up and fall off. The longest stretch of IV;s that I have ever experienced was nearly 4 months when my cepacia and PA went nuts and didn't respond to anything. Scary stuff...and I felt terrible.

If I am not mistaken, Cipro can cause horrible muscle/joint pain....much like any drugs in the quinilone family. Some people on Levaquin develop knee pain to the point of making them shuffle. We actually nicknamed this the Levaquin shuffle because it seemed to happen often to patients taking this as well as Cipro.

I would have a chat with your doctor and see if there are measures that can be done to help you out better, or even a pain control plan. These meds are hard enough on us, pain makes it that much worse. I personally have chronic pain anyways from Ehler's -Danlos, whenever I am on IV's and sick, that pain just gets that much more worse to the point where I cannot touch my ankles or hands, sheets become too heavy for them. My doctor has me on pain meds chronically, but bumps up the dosage when it starts to get worse. Once I start to feel better (the infection starts to clear), then we back down on the dosages down to what is normal for me.

I hope it gets better for you, hang in there....

Hugs, Jenn 39 w/CF

 

[JustDucky]

Every time I am ill, the joint pains become pretty significant. Also, some antibiotics increase the pain as well, so it becomes a double whammy. My joint pain seems to be the worst in my hips, wrists and ankles. Opening jars becomes an ordeal as well, so I use those gripper pads which helps some. The exhaustion comes with my body fighting very hard as well as being very anemic, which doesn't help my energy levels or my breathing.

I really feel for you,I can't imagine having my port accessed all of the time....my skin would probably bubble up and fall off. The longest stretch of IV;s that I have ever experienced was nearly 4 months when my cepacia and PA went nuts and didn't respond to anything. Scary stuff...and I felt terrible.

If I am not mistaken, Cipro can cause horrible muscle/joint pain....much like any drugs in the quinilone family. Some people on Levaquin develop knee pain to the point of making them shuffle. We actually nicknamed this the Levaquin shuffle because it seemed to happen often to patients taking this as well as Cipro.

I would have a chat with your doctor and see if there are measures that can be done to help you out better, or even a pain control plan. These meds are hard enough on us, pain makes it that much worse. I personally have chronic pain anyways from Ehler's -Danlos, whenever I am on IV's and sick, that pain just gets that much more worse to the point where I cannot touch my ankles or hands, sheets become too heavy for them. My doctor has me on pain meds chronically, but bumps up the dosage when it starts to get worse. Once I start to feel better (the infection starts to clear), then we back down on the dosages down to what is normal for me.

I hope it gets better for you, hang in there....

Hugs, Jenn 39 w/CF

 

[JustDucky]

Every time I am ill, the joint pains become pretty significant. Also, some antibiotics increase the pain as well, so it becomes a double whammy. My joint pain seems to be the worst in my hips, wrists and ankles. Opening jars becomes an ordeal as well, so I use those gripper pads which helps some. The exhaustion comes with my body fighting very hard as well as being very anemic, which doesn't help my energy levels or my breathing.

I really feel for you,I can't imagine having my port accessed all of the time....my skin would probably bubble up and fall off. The longest stretch of IV;s that I have ever experienced was nearly 4 months when my cepacia and PA went nuts and didn't respond to anything. Scary stuff...and I felt terrible.

If I am not mistaken, Cipro can cause horrible muscle/joint pain....much like any drugs in the quinilone family. Some people on Levaquin develop knee pain to the point of making them shuffle. We actually nicknamed this the Levaquin shuffle because it seemed to happen often to patients taking this as well as Cipro.

I would have a chat with your doctor and see if there are measures that can be done to help you out better, or even a pain control plan. These meds are hard enough on us, pain makes it that much worse. I personally have chronic pain anyways from Ehler's -Danlos, whenever I am on IV's and sick, that pain just gets that much more worse to the point where I cannot touch my ankles or hands, sheets become too heavy for them. My doctor has me on pain meds chronically, but bumps up the dosage when it starts to get worse. Once I start to feel better (the infection starts to clear), then we back down on the dosages down to what is normal for me.

I hope it gets better for you, hang in there....

Hugs, Jenn 39 w/CF

 

[MiddleAgedLady]

I have to say I'm somewhat encouraged to hear you two say this, even though I despise the thought of anyone else feeling as fatigued as I do. Daisymae, my CF doctor dismissed me for 15 years about the pain and fatigue. He kept telling me that I was too tired for my level of lung disease. When I asked what happens to me? he couldn't answer.

My pain level is so bad on Cipro and Avelox I have had to stop taking them. They are known to cause muscle pain. I also have arthritis with aggressive erosion of joints. I have found a number of CFers with murky autoimmune lab results; mine has always been suspicious for lupus, which would explain the fatigue.

Good luck, I know this can all be maddening!

 

[MiddleAgedLady]

I have to say I'm somewhat encouraged to hear you two say this, even though I despise the thought of anyone else feeling as fatigued as I do. Daisymae, my CF doctor dismissed me for 15 years about the pain and fatigue. He kept telling me that I was too tired for my level of lung disease. When I asked what happens to me? he couldn't answer.

My pain level is so bad on Cipro and Avelox I have had to stop taking them. They are known to cause muscle pain. I also have arthritis with aggressive erosion of joints. I have found a number of CFers with murky autoimmune lab results; mine has always been suspicious for lupus, which would explain the fatigue.

Good luck, I know this can all be maddening!

 

[MiddleAgedLady]

I have to say I'm somewhat encouraged to hear you two say this, even though I despise the thought of anyone else feeling as fatigued as I do. Daisymae, my CF doctor dismissed me for 15 years about the pain and fatigue. He kept telling me that I was too tired for my level of lung disease. When I asked what happens to me? he couldn't answer.

My pain level is so bad on Cipro and Avelox I have had to stop taking them. They are known to cause muscle pain. I also have arthritis with aggressive erosion of joints. I have found a number of CFers with murky autoimmune lab results; mine has always been suspicious for lupus, which would explain the fatigue.

Good luck, I know this can all be maddening!

 

[Rebjane]

Zyvox can cause muscle aches, neuropathy. My daughter has complained about "leg aches" when she is on Zyvox.

Have you had labwork done while on all these antibiotics? BUN Creatinine, lytes, Liver function test, and a CBC. There may be other lab tests that your doc would recommend as well. Are you anemic?

 

[Rebjane]

Zyvox can cause muscle aches, neuropathy. My daughter has complained about "leg aches" when she is on Zyvox.

Have you had labwork done while on all these antibiotics? BUN Creatinine, lytes, Liver function test, and a CBC. There may be other lab tests that your doc would recommend as well. Are you anemic?

 

[Rebjane]

Zyvox can cause muscle aches, neuropathy. My daughter has complained about "leg aches" when she is on Zyvox.

Have you had labwork done while on all these antibiotics? BUN Creatinine, lytes, Liver function test, and a CBC. There may be other lab tests that your doc would recommend as well. Are you anemic?

 

[JennifersHope]

Hey I am not anemic, my Hgb was 14. I get labs drawn weekly as well as peek and troughs. My last blood work was picture perfect. There was a mix up with my peak and trough levels and I will not know the results until tomorrow. I do not have ringing in my ears or kidney pain but my joints are killing me and my feet keep going numb. I will say my breathing is better though...

Jenn I have zero tolerance for pain medications, they make me throw up, even with zofran, Advil is as strong as I can go.

The fatigue increased little by little until I could not feel rested in spite of how much sleep I get. That is where I am at now. No matter how much sleep I feel tired. The Infectious disease team said that it exhaustion comes with the NTM and really I would tolerate the pain if I didn't feel like I am totally sleep deprived all the time.


I guess I am just complaining which is stupid.. I can't wait to feel better. I wonder if I have to stay on the zyvox, if that is what is causing the joint pain, I was told the Amikacin in non negotiable and that I need that one, but I wonder if they would trade me the zyvox for something different.

Thanks for your input..

and letting me be a big baby!!

 

[JennifersHope]

Hey I am not anemic, my Hgb was 14. I get labs drawn weekly as well as peek and troughs. My last blood work was picture perfect. There was a mix up with my peak and trough levels and I will not know the results until tomorrow. I do not have ringing in my ears or kidney pain but my joints are killing me and my feet keep going numb. I will say my breathing is better though...

Jenn I have zero tolerance for pain medications, they make me throw up, even with zofran, Advil is as strong as I can go.

The fatigue increased little by little until I could not feel rested in spite of how much sleep I get. That is where I am at now. No matter how much sleep I feel tired. The Infectious disease team said that it exhaustion comes with the NTM and really I would tolerate the pain if I didn't feel like I am totally sleep deprived all the time.


I guess I am just complaining which is stupid.. I can't wait to feel better. I wonder if I have to stay on the zyvox, if that is what is causing the joint pain, I was told the Amikacin in non negotiable and that I need that one, but I wonder if they would trade me the zyvox for something different.

Thanks for your input..

and letting me be a big baby!!