I'm wondering if any one out there has heard of CF related neuropathy? So I have CF with out diabetes and I'm experiencing a lot of pain in my hands, forearms and feet. I'll wake up in several times a night with my fists clenched as tight as can be and my feet curled up like crows feet. Very painful and I'm losing sleep because of it. My muscles ache all day from it as well. I've also noticed my sensation of touch has diminished. I'll get the occasional "pins & needles" feeling in my fingers and sometimes my finger tips have the pain of being burnt when they have not been.<div> I've had joint pain for as long as I can remember and my ribs have always been hypersensitive (Can make Vest treatments unbearable at times) but my CF doc always wrote it off as me overworking myself while I was employed or thought I was whining. I've been out of work for almost 3 years and it has not improved. I stay pretty active but now it almost seems like the more I do the more I hurt.</div><div>I'm seeing a neurologist right now and my blood work came back good he's got me going back for an EMG to check more out. He feels my CF probably led to come from of neuropathy due to some mineral or vitamin deficiency but every year with my annual studies my test results look fine.</div><div>Hopefully one of my docs can put their thinking cap or and figure this issue out but until then if anyone out there can relate to this, please respond.</div><div><br></div><div>Thanks & always,</div><div> Abnormal</div><div><br></div><div>36yrs old w/CF</div>
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Neuropathy from CF?
- Thread starter abnormal
- Start date
I'm wondering if any one out there has heard of CF related neuropathy? So I have CF with out diabetes and I'm experiencing a lot of pain in my hands, forearms and feet. I'll wake up in several times a night with my fists clenched as tight as can be and my feet curled up like crows feet. Very painful and I'm losing sleep because of it. My muscles ache all day from it as well. I've also noticed my sensation of touch has diminished. I'll get the occasional "pins & needles" feeling in my fingers and sometimes my finger tips have the pain of being burnt when they have not been.I've had joint pain for as long as I can remember and my ribs have always been hypersensitive (Can make Vest treatments unbearable at times) but my CF doc always wrote it off as me overworking myself while I was employed or thought I was whining. I've been out of work for almost 3 years and it has not improved. I stay pretty active but now it almost seems like the more I do the more I hurt.I'm seeing a neurologist right now and my blood work came back good he's got me going back for an EMG to check more out. He feels my CF probably led to come from of neuropathy due to some mineral or vitamin deficiency but every year with my annual studies my test results look fine.Hopefully one of my docs can put their thinking cap or and figure this issue out but until then if anyone out there can relate to this, please respond.<br>Thanks & always,Abnormal<br>36yrs old w/CF
I'm wondering if any one out there has heard of CF related neuropathy? So I have CF with out diabetes and I'm experiencing a lot of pain in my hands, forearms and feet. I'll wake up in several times a night with my fists clenched as tight as can be and my feet curled up like crows feet. Very painful and I'm losing sleep because of it. My muscles ache all day from it as well. I've also noticed my sensation of touch has diminished. I'll get the occasional "pins & needles" feeling in my fingers and sometimes my finger tips have the pain of being burnt when they have not been.I've had joint pain for as long as I can remember and my ribs have always been hypersensitive (Can make Vest treatments unbearable at times) but my CF doc always wrote it off as me overworking myself while I was employed or thought I was whining. I've been out of work for almost 3 years and it has not improved. I stay pretty active but now it almost seems like the more I do the more I hurt.I'm seeing a neurologist right now and my blood work came back good he's got me going back for an EMG to check more out. He feels my CF probably led to come from of neuropathy due to some mineral or vitamin deficiency but every year with my annual studies my test results look fine.Hopefully one of my docs can put their thinking cap or and figure this issue out but until then if anyone out there can relate to this, please respond.<br>Thanks & always,Abnormal<br>36yrs old w/CF
T
TonyaH
Guest
Have you discussed your medication history with your neurologist? I know some medications can cause neuropathy. My son's treatment for m. abcessus includes zyvox (linazolid), and neuropathy was a side affect to watch for. Best of luck in finding answers!
T
TonyaH
Guest
Have you discussed your medication history with your neurologist? I know some medications can cause neuropathy. My son's treatment for m. abcessus includes zyvox (linazolid), and neuropathy was a side affect to watch for. Best of luck in finding answers!
T
TonyaH
Guest
<BR>Have you discussed your medication history with your neurologist? I know some medications can cause neuropathy. My son's treatment for m. abcessus includes zyvox (linazolid), and neuropathy was a side affect to watch for. Best of luck in finding answers!
S
Swallowtail66
Guest
I have had pain most of my adult life. It became severe in my 30's. My neurologist diagnosed fibromyalgia. I hurt everywhere and had muscle spasms in my back so badly I couldn't breathe. Add the migraines to it and it was rough. However, after sleeping better (lots of changes) I had an easing of pain. If my sleep gets messed up, things get worse. I have extremity numbness and pins and needles sometimes, and the jumpy muscles that feel like insects crawling on the inside that drive you crazy. As long as I keep the balance between breathing, digestion, and sleep, I seem to be okay most of the time. I think the neurologist is the right path as long as you find one that believes you. If he/she doesn't, get another doctor until you find one that does. Good luck.
S
Swallowtail66
Guest
I have had pain most of my adult life. It became severe in my 30's. My neurologist diagnosed fibromyalgia. I hurt everywhere and had muscle spasms in my back so badly I couldn't breathe. Add the migraines to it and it was rough. However, after sleeping better (lots of changes) I had an easing of pain. If my sleep gets messed up, things get worse. I have extremity numbness and pins and needles sometimes, and the jumpy muscles that feel like insects crawling on the inside that drive you crazy. As long as I keep the balance between breathing, digestion, and sleep, I seem to be okay most of the time. I think the neurologist is the right path as long as you find one that believes you. If he/she doesn't, get another doctor until you find one that does. Good luck.
S
Swallowtail66
Guest
<BR>I have had pain most of my adult life. It became severe in my 30's. My neurologist diagnosed fibromyalgia. I hurt everywhere and had muscle spasms in my back so badly I couldn't breathe. Add the migraines to it and it was rough. However, after sleeping better (lots of changes) I had an easing of pain. If my sleep gets messed up, things get worse. I have extremity numbness and pins and needles sometimes, and the jumpy muscles that feel like insects crawling on the inside that drive you crazy. As long as I keep the balance between breathing, digestion, and sleep, I seem to be okay most of the time. I think the neurologist is the right path as long as you find one that believes you. If he/she doesn't, get another doctor until you find one that does. Good luck.
I have never heard of myopathy caused from CF, but I am always learning something new about this disease. I wonder if it has anything to do with our nutritional status, malabsorbing vitamins can cause many problems. I know that B12 deficiency can cause neuropathy, so it really wouldn't be a far stretch. I am glad you are seeing a neuro who is willing to be thorough. I have had some doozies as far as doctors listening to me regarding my chronic pain until recently. I have Ehlers-Danlos (my joints dislocate at will from collagen abnormalities causing pain), but for years was told that I had fibromyalgia and that I was "crazy" and exaggerating my degree of pain. Turns out that many people with Ehlers need mobility devices such as canes, walkers by the time they are 40 because of pain and instability in their joints. My lungs also hurt constantly, some from coughing, some from plugging etc...
I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
Hugs and good luck,
Jenn 39 w/CF
I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
Hugs and good luck,
Jenn 39 w/CF
I have never heard of myopathy caused from CF, but I am always learning something new about this disease. I wonder if it has anything to do with our nutritional status, malabsorbing vitamins can cause many problems. I know that B12 deficiency can cause neuropathy, so it really wouldn't be a far stretch. I am glad you are seeing a neuro who is willing to be thorough. I have had some doozies as far as doctors listening to me regarding my chronic pain until recently. I have Ehlers-Danlos (my joints dislocate at will from collagen abnormalities causing pain), but for years was told that I had fibromyalgia and that I was "crazy" and exaggerating my degree of pain. Turns out that many people with Ehlers need mobility devices such as canes, walkers by the time they are 40 because of pain and instability in their joints. My lungs also hurt constantly, some from coughing, some from plugging etc...
I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
Hugs and good luck,
Jenn 39 w/CF
I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
Hugs and good luck,
Jenn 39 w/CF
I have never heard of myopathy caused from CF, but I am always learning something new about this disease. I wonder if it has anything to do with our nutritional status, malabsorbing vitamins can cause many problems. I know that B12 deficiency can cause neuropathy, so it really wouldn't be a far stretch. I am glad you are seeing a neuro who is willing to be thorough. I have had some doozies as far as doctors listening to me regarding my chronic pain until recently. I have Ehlers-Danlos (my joints dislocate at will from collagen abnormalities causing pain), but for years was told that I had fibromyalgia and that I was "crazy" and exaggerating my degree of pain. Turns out that many people with Ehlers need mobility devices such as canes, walkers by the time they are 40 because of pain and instability in their joints. My lungs also hurt constantly, some from coughing, some from plugging etc...
<br />
<br />I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
<br />
<br />Hugs and good luck,
<br />Jenn 39 w/CF
<br />
<br />I pray that your doc figures you out and doesn't write you off. Unfortunately, there are many docs who prematurely throw their hands up in the air and even go as far as calling you nuts. If that happens, please keep going and don't stop until you are satisfied. Your gut feelings are very important, you know your body better than any other person on the planet.
<br />
<br />Hugs and good luck,
<br />Jenn 39 w/CF
I have a lot of muscle cramping, numbness, tingling it started out just in my legs; but now its in my arms, hands and feet. Mine is not b/c of CF though. I have a mitochondrial disease which causes these problems for me.
If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
I have a lot of muscle cramping, numbness, tingling it started out just in my legs; but now its in my arms, hands and feet. Mine is not b/c of CF though. I have a mitochondrial disease which causes these problems for me.
If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
I have a lot of muscle cramping, numbness, tingling it started out just in my legs; but now its in my arms, hands and feet. Mine is not b/c of CF though. I have a mitochondrial disease which causes these problems for me.
<br />
<br />If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
<br />
<br />If you can you should get a work up. Have them check vitamins and minerals, all of that stuff. Leave no stone un turned, and keep pushing! I hope you get this figured out soon...
There are so many factors in diagnosing the problem. I agree with Chrissy- keep digging until you get answers. Good luck!
Bill, my husband's father also had Charco Marie Tooth syndrome. I have never heard of anyone else having it. Interesting.
Tonya, both my kids had some neuropathy after months of linezolid. It did improve after stopping the med.
Bill, my husband's father also had Charco Marie Tooth syndrome. I have never heard of anyone else having it. Interesting.
Tonya, both my kids had some neuropathy after months of linezolid. It did improve after stopping the med.
There are so many factors in diagnosing the problem. I agree with Chrissy- keep digging until you get answers. Good luck!
Bill, my husband's father also had Charco Marie Tooth syndrome. I have never heard of anyone else having it. Interesting.
Tonya, both my kids had some neuropathy after months of linezolid. It did improve after stopping the med.
Bill, my husband's father also had Charco Marie Tooth syndrome. I have never heard of anyone else having it. Interesting.
Tonya, both my kids had some neuropathy after months of linezolid. It did improve after stopping the med.