Muscle and Joint Pain/severe exhaustion

[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!!

 

[JustDucky]

You aren't being a baby....If I had the IV schedule that you had, I would be bone tired too! You probably aren't sleeping long enough in between, and having to physically get up and hook up IV's, then flush them in the middle of the night takes away from a good night's rest. I know that whenever I am on Zosyn, the exhaustion is more profound because I have to give IV's every 6 hours. The other IV's that they put me on, I try to coordinate them with the Zosyn schedule. The NTM is exhausting as well from what I understand, so you have every right to feel the way you do....you're venting, not being a baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

Glad you aren't anemic, you have a beautiful Hgb...Mine is sitting around 8.5 right now blah and I'm on IV"s but not nearly as rigorous a schedule as yours. It sucks that you can't take some good pain meds. Maybe heating pads and nice hot showers would help. I hope you can switch out some of those antibiotics, sounds like the Zyvoxx and or the Cipro could easily be the culprits.

Feel better soon!

Jenn 39 w/CF

 

[JustDucky]

You aren't being a baby....If I had the IV schedule that you had, I would be bone tired too! You probably aren't sleeping long enough in between, and having to physically get up and hook up IV's, then flush them in the middle of the night takes away from a good night's rest. I know that whenever I am on Zosyn, the exhaustion is more profound because I have to give IV's every 6 hours. The other IV's that they put me on, I try to coordinate them with the Zosyn schedule. The NTM is exhausting as well from what I understand, so you have every right to feel the way you do....you're venting, not being a baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

Glad you aren't anemic, you have a beautiful Hgb...Mine is sitting around 8.5 right now blah and I'm on IV"s but not nearly as rigorous a schedule as yours. It sucks that you can't take some good pain meds. Maybe heating pads and nice hot showers would help. I hope you can switch out some of those antibiotics, sounds like the Zyvoxx and or the Cipro could easily be the culprits.

Feel better soon!

Jenn 39 w/CF

 

[JustDucky]

You aren't being a baby....If I had the IV schedule that you had, I would be bone tired too! You probably aren't sleeping long enough in between, and having to physically get up and hook up IV's, then flush them in the middle of the night takes away from a good night's rest. I know that whenever I am on Zosyn, the exhaustion is more profound because I have to give IV's every 6 hours. The other IV's that they put me on, I try to coordinate them with the Zosyn schedule. The NTM is exhausting as well from what I understand, so you have every right to feel the way you do....you're venting, not being a baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

Glad you aren't anemic, you have a beautiful Hgb...Mine is sitting around 8.5 right now blah and I'm on IV"s but not nearly as rigorous a schedule as yours. It sucks that you can't take some good pain meds. Maybe heating pads and nice hot showers would help. I hope you can switch out some of those antibiotics, sounds like the Zyvoxx and or the Cipro could easily be the culprits.

Feel better soon!

Jenn 39 w/CF

 

[augiee]

There is a thing call CF Related Arthritis, what causes it are a build up of white blood cells in joints and muscle. I go to a <span class="st">Rheumatolagist. He treats it like RA, but they help a little but it wares off in 18 months. I take ibuprofen 800 mgs 3 times a day it helps, I also get percocet for the pain. I would ask to see a Rheumatolgist, because it could be something that a cf doc would not see.<br>

 

[augiee]

There is a thing call CF Related Arthritis, what causes it are a build up of white blood cells in joints and muscle. I go to a <span class="st">Rheumatolagist. He treats it like RA, but they help a little but it wares off in 18 months. I take ibuprofen 800 mgs 3 times a day it helps, I also get percocet for the pain. I would ask to see a Rheumatolgist, because it could be something that a cf doc would not see.<br>

 

[augiee]

There is a thing call CF Related Arthritis, what causes it are a build up of white blood cells in joints and muscle. I go to a <span class="st">Rheumatolagist. He treats it like RA, but they help a little but it wares off in 18 months. I take ibuprofen 800 mgs 3 times a day it helps, I also get percocet for the pain. I would ask to see a Rheumatolgist, because it could be something that a cf doc would not see.<br>

 

[MMBinNC]

Another thing is that inflammation in the lungs can cause joint pain. When I talked to a rheumatologist a little while ago he said this is something that they commonly see, and it seems that my joints and chest hurt a lot when I get an exacerbation. Sadly there really wasn't much of a recourse for me, if it's mainly joint pain Voltaren is a great drug. Which pain meds can't you handle? Codeine based drugs are a lot worse than say Vicodin or Oxycontin. Anther thing that could help are Lidocaine Patches if you have back pain. I loved them, but my insurance wouldn't cover them for me and only if I had pain from herpes lol (United HealthCare)

 

[MMBinNC]

Another thing is that inflammation in the lungs can cause joint pain. When I talked to a rheumatologist a little while ago he said this is something that they commonly see, and it seems that my joints and chest hurt a lot when I get an exacerbation. Sadly there really wasn't much of a recourse for me, if it's mainly joint pain Voltaren is a great drug. Which pain meds can't you handle? Codeine based drugs are a lot worse than say Vicodin or Oxycontin. Anther thing that could help are Lidocaine Patches if you have back pain. I loved them, but my insurance wouldn't cover them for me and only if I had pain from herpes lol (United HealthCare)

 

[MMBinNC]

Another thing is that inflammation in the lungs can cause joint pain. When I talked to a rheumatologist a little while ago he said this is something that they commonly see, and it seems that my joints and chest hurt a lot when I get an exacerbation. Sadly there really wasn't much of a recourse for me, if it's mainly joint pain Voltaren is a great drug. Which pain meds can't you handle? Codeine based drugs are a lot worse than say Vicodin or Oxycontin. Anther thing that could help are Lidocaine Patches if you have back pain. I loved them, but my insurance wouldn't cover them for me and only if I had pain from herpes lol (United HealthCare)

 

[JennifersHope]

I think my directly corelates to the IV drugs, I had no pain before hand and I was quite ill, I started taking the drug and in two days I was in .pain.

Thanks for the input

 

[JennifersHope]

I think my directly corelates to the IV drugs, I had no pain before hand and I was quite ill, I started taking the drug and in two days I was in .pain.

Thanks for the input

 

[JennifersHope]

I think my directly corelates to the IV drugs, I had no pain before hand and I was quite ill, I started taking the drug and in two days I was in .pain.

Thanks for the input

 

[megan420]

Please be careful with the med Amakacin......I was on long term IV meds, that being one of them. I lost 50% of my hearing because of that med, at age 13 I got hearing aids and Im 21 now. So just be cautious, if you feel like u arent hearing the best STOP it!

 

[megan420]

Please be careful with the med Amakacin......I was on long term IV meds, that being one of them. I lost 50% of my hearing because of that med, at age 13 I got hearing aids and Im 21 now. So just be cautious, if you feel like u arent hearing the best STOP it!

 

[megan420]

Please be careful with the med Amakacin......I was on long term IV meds, that being one of them. I lost 50% of my hearing because of that med, at age 13 I got hearing aids and Im 21 now. So just be cautious, if you feel like u arent hearing the best STOP it!

 

[JenWren]

Yes yes, joint paint chronic neck arm, finger wrists. Also the hot and cold flashes that I do not believe are related to menopause which I am still not sure I am going through. I am sorry for your pain and one thing that does help with my elbow pain and other parts of my arms is a patch called Lydicaine. It is a prescription and an alternative to pain meds. I had Ortho check my joints and elbow and such, they were able to get me the prescription. Funny thing is the guy walked out of the hospital room after my exam and never told me what he thought it was. The nurse brought the patch in next round. So hope this was helpful. I think a lot of the pain is from a combination of cipro which can cause ruptures in the hand, thumb and rotater cuff. Had them all and then also a type of Inflammation of these areas from leaning , when I support myself or try to when I am sick. This kind of leaning can lead to inflammation of the neck shoulders, arms and down. I am constantly trying to find new ways to lean or soft, cushiony things to lean on. That works. Well I could go on. But I'm keeping in mind your question I hope the Lydicaine patch might help. Of course you have to get a prescription for it. If the docs don't take you seriously enough, talk a little louder. It took me awhile to get their attention . <br><br>JenWren 51cf,crd <br>

 

[JenWren]

Yes yes, joint paint chronic neck arm, finger wrists. Also the hot and cold flashes that I do not believe are related to menopause which I am still not sure I am going through. I am sorry for your pain and one thing that does help with my elbow pain and other parts of my arms is a patch called Lydicaine. It is a prescription and an alternative to pain meds. I had Ortho check my joints and elbow and such, they were able to get me the prescription. Funny thing is the guy walked out of the hospital room after my exam and never told me what he thought it was. The nurse brought the patch in next round. So hope this was helpful. I think a lot of the pain is from a combination of cipro which can cause ruptures in the hand, thumb and rotater cuff. Had them all and then also a type of Inflammation of these areas from leaning , when I support myself or try to when I am sick. This kind of leaning can lead to inflammation of the neck shoulders, arms and down. I am constantly trying to find new ways to lean or soft, cushiony things to lean on. That works. Well I could go on. But I'm keeping in mind your question I hope the Lydicaine patch might help. Of course you have to get a prescription for it. If the docs don't take you seriously enough, talk a little louder. It took me awhile to get their attention . <br><br>JenWren 51cf,crd <br>

 

[JenWren]

Yes yes, joint paint chronic neck arm, finger wrists. Also the hot and cold flashes that I do not believe are related to menopause which I am still not sure I am going through. I am sorry for your pain and one thing that does help with my elbow pain and other parts of my arms is a patch called Lydicaine. It is a prescription and an alternative to pain meds. I had Ortho check my joints and elbow and such, they were able to get me the prescription. Funny thing is the guy walked out of the hospital room after my exam and never told me what he thought it was. The nurse brought the patch in next round. So hope this was helpful. I think a lot of the pain is from a combination of cipro which can cause ruptures in the hand, thumb and rotater cuff. Had them all and then also a type of Inflammation of these areas from leaning , when I support myself or try to when I am sick. This kind of leaning can lead to inflammation of the neck shoulders, arms and down. I am constantly trying to find new ways to lean or soft, cushiony things to lean on. That works. Well I could go on. But I'm keeping in mind your question I hope the Lydicaine patch might help. Of course you have to get a prescription for it. If the docs don't take you seriously enough, talk a little louder. It took me awhile to get their attention . <br><br>JenWren 51cf,crd <br>

 

[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