Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 I think its a way of saying the same thing. " You have fatigue and its chronic or long term, but we can't give you a reason. " That's basically it. My doctor doesn't want to call it 'Chronic Fatigue Syndrome' for various reasons from insurance to his own 'unique' way of not using what he calls 'allopathic' or regular medical terms. Basically I have fatigue I never get over with no cause. Marla I hear you there. I'm suffering through an allergy flair up anyway since last night, and then I worked a half day this morning. I ran two errands after work and by the time I got home, I was too exhausted to look for my missing but suppose to have all ready taken blood pressure medicine. Dane had to come home and look for them. Are you on disability? Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 I think its a way of saying the same thing. " You have fatigue and its chronic or long term, but we can't give you a reason. " That's basically it. My doctor doesn't want to call it 'Chronic Fatigue Syndrome' for various reasons from insurance to his own 'unique' way of not using what he calls 'allopathic' or regular medical terms. Basically I have fatigue I never get over with no cause. Marla I hear you there. I'm suffering through an allergy flair up anyway since last night, and then I worked a half day this morning. I ran two errands after work and by the time I got home, I was too exhausted to look for my missing but suppose to have all ready taken blood pressure medicine. Dane had to come home and look for them. Are you on disability? Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2001 Report Share Posted June 7, 2001 Darcy, Hello again. I was just thinking about that today - disability - but being self- employed I don't even know how that would work. I just struggle through, working when I can, and laying about when I can't. <sigh> My husband does have to carry the burden of two jobs though, which as someone said in a later post, tends to add to the stress.... Allergies affect me too. I had an attack at a dinner theatre the other night and ever since then have been a zombie. Here's hoping tomorrow is one of the better ones for all of us. Marla > I hear you there. I'm suffering through an allergy flair up anyway since > last night, and then I worked a half day this morning. I ran two errands > after work and by the time I got home, I was too exhausted to look for my > missing but suppose to have all ready taken blood pressure medicine. Dane > had to come home and look for them. Are you on disability? > > Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2001 Report Share Posted June 7, 2001 Darcy, Hello again. I was just thinking about that today - disability - but being self- employed I don't even know how that would work. I just struggle through, working when I can, and laying about when I can't. <sigh> My husband does have to carry the burden of two jobs though, which as someone said in a later post, tends to add to the stress.... Allergies affect me too. I had an attack at a dinner theatre the other night and ever since then have been a zombie. Here's hoping tomorrow is one of the better ones for all of us. Marla > I hear you there. I'm suffering through an allergy flair up anyway since > last night, and then I worked a half day this morning. I ran two errands > after work and by the time I got home, I was too exhausted to look for my > missing but suppose to have all ready taken blood pressure medicine. Dane > had to come home and look for them. Are you on disability? > > Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2001 Report Share Posted June 7, 2001 Darcy, Hello again. I was just thinking about that today - disability - but being self- employed I don't even know how that would work. I just struggle through, working when I can, and laying about when I can't. <sigh> My husband does have to carry the burden of two jobs though, which as someone said in a later post, tends to add to the stress.... Allergies affect me too. I had an attack at a dinner theatre the other night and ever since then have been a zombie. Here's hoping tomorrow is one of the better ones for all of us. Marla > I hear you there. I'm suffering through an allergy flair up anyway since > last night, and then I worked a half day this morning. I ran two errands > after work and by the time I got home, I was too exhausted to look for my > missing but suppose to have all ready taken blood pressure medicine. Dane > had to come home and look for them. Are you on disability? > > Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Terry, Fatigue is SO very common. I'm excessively sleepy ALL the time. I have been battling it from day one of my illness. Like you said in your post alot of things could be contributing to your daughter's fatigue but mito in and of itself can be the culprit as your body is experiencing a severe energy crisis all the time. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Terry, Fatigue is SO very common. I'm excessively sleepy ALL the time. I have been battling it from day one of my illness. Like you said in your post alot of things could be contributing to your daughter's fatigue but mito in and of itself can be the culprit as your body is experiencing a severe energy crisis all the time. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Hi , Thank you so much. Your comments just confirm for me that I need to pursue this further and hang in there. We hope to hear back from Cleveland by next week. I have followed your story. I hope you are doing better. How is you r PICC line. My daughter has had both a PICC line and central line in the past during her treatment for Crohn's. I know how much work it was. Terry >From: LILQT4U1984@... >Reply-To: >To: >Subject: Re: fatigue >Date: Thu, 15 May 2003 19:58:39 EDT > > > > > BODY {font-family: Arial; font-size: 10pt;} > > > > >Terry, > >Fatigue is SO very common. I'm excessively sleepy ALL the time. I have been >battling it from day one of my illness. Like you said in your post alot of >things could be contributing to your daughter's fatigue but mito in and of >itself can be the culprit as your body is experiencing a severe energy >crisis >all the time. Hope that helps. _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Hi , Thank you so much. Your comments just confirm for me that I need to pursue this further and hang in there. We hope to hear back from Cleveland by next week. I have followed your story. I hope you are doing better. How is you r PICC line. My daughter has had both a PICC line and central line in the past during her treatment for Crohn's. I know how much work it was. Terry >From: LILQT4U1984@... >Reply-To: >To: >Subject: Re: fatigue >Date: Thu, 15 May 2003 19:58:39 EDT > > > > > BODY {font-family: Arial; font-size: 10pt;} > > > > >Terry, > >Fatigue is SO very common. I'm excessively sleepy ALL the time. I have been >battling it from day one of my illness. Like you said in your post alot of >things could be contributing to your daughter's fatigue but mito in and of >itself can be the culprit as your body is experiencing a severe energy >crisis >all the time. Hope that helps. _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Terry I think it could be any of these. I have physical fatigue from the mito, but my sleep apnea causes sleepiness when I don't use my C-PAP. Of course we are all different. laurie > > Reply-To: > Date: Thu, 15 May 2003 21:05:20 +0000 > To: > Subject: fatigue > > > > > Hi, > I have a question. I know this list is for adults with Mito but my question > is regarding my 15 y/o. Her symptoms are so much more similar to those of > you adults than the children I have read about. She was tested for mito at > CC 3 weeks ago. Dr. C believes she has secondary mitochondrial disease to > medications and autoimmune disease. She has been on meds for Crohn's > Disease, arthritis and many other diagnosis for 6 years. We are waiting > test results before we can treat. > > My question is this. Is fatigue a big issue for those of you with > mito(primary or secondary). I suspect her extreme fatigue could be mito or > from her neurontin(tremors) or ativan(meniere's). Both these drugs have been > added since January. She had fatigue before but not this severe. The other > part of the equation is that she decreased her Prednisone dose to 5mg every > other day at the same time. > > We are also awaiting results from a sleep study for suspected sleep apnea. > So there are many reasons why she could be tired. > > Her neuro was frustrating today since he questioned whether she could be > suffering depression (as you know folks wax and wane out of depressions). > She is not depressed and has never been diagnosed with depression. I am > certain she is not depressed. Fortunately, Dr. C saw she was tired and > attritubuted that to either her meds, sleep or mito. I just needed to vent > on this. I know the neuro has to consider this but come on, he just got done > saying that neurontin can cause tiredness. We even tried taking her off it > and couldn't because her tremor was too bad. > > Thanks for any input. I do hope you won't mind me posting here. > Terry > > _________________________________________________________________ > The new MSN 8: advanced junk mail protection and 2 months FREE* > http://join.msn.com/?page=features/junkmail > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Thanks for asking Terry. My PICC line is ok. I have just learned to adjust and adapt to it. I was intending to go to the lab yesterday to get my first carnitine levels checked since beginning the IV Carnitor but "my lady" at the lab is out of town until Mon. I will go Mon now. I'm not sure how long it will take to get the results. I would think at least a week. Hope your daughter is having a good day today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Thanks for asking Terry. My PICC line is ok. I have just learned to adjust and adapt to it. I was intending to go to the lab yesterday to get my first carnitine levels checked since beginning the IV Carnitor but "my lady" at the lab is out of town until Mon. I will go Mon now. I'm not sure how long it will take to get the results. I would think at least a week. Hope your daughter is having a good day today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Terry, I was about 14 when my main symptoms hit (I am 26 now). The fatigue and muscle stamina were the main issues with me. The doctors did go back and forth on asking if I was depressed. I think that is common with most people with mito. The fatigue got worse throughout the week, I think all the walking and such in high school attributed to it. I wasn't on a lot of meds like your daughter is. I hope you are able to find an answer. Smiles, aHi,I have a question. I know this list is for adults with Mito but my question is regarding my 15 y/o. Her symptoms are so much more similar to those of you adults than the children I have read about. She was tested for mito at CC 3 weeks ago. Dr. C believes she has secondary mitochondrial disease to medications and autoimmune disease. She has been on meds for Crohn's Disease, arthritis and many other diagnosis for 6 years. We are waiting test results before we can treat.My question is this. Is fatigue a big issue for those of you with mito(primary or secondary). I suspect her extreme fatigue could be mito or from her neurontin(tremors) or ativan(meniere's). Both these drugs have been added since January. She had fatigue before but not this severe. The other part of the equation is that she decreased her Prednisone dose to 5mg every other day at the same time.We are also awaiting results from a sleep study for suspected sleep apnea. So there are many reasons why she could be tired.Her neuro was frustrating today since he questioned whether she could be suffering depression (as you know folks wax and wane out of depressions). She is not depressed and has never been diagnosed with depression. I am certain she is not depressed. Fortunately, Dr. C saw she was tired and attritubuted that to either her meds, sleep or mito. I just needed to vent on this. I know the neuro has to consider this but come on, he just got done saying that neurontin can cause tiredness. We even tried taking her off it and couldn't because her tremor was too bad.Thanks for any input. I do hope you won't mind me posting here.Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Terry, I was about 14 when my main symptoms hit (I am 26 now). The fatigue and muscle stamina were the main issues with me. The doctors did go back and forth on asking if I was depressed. I think that is common with most people with mito. The fatigue got worse throughout the week, I think all the walking and such in high school attributed to it. I wasn't on a lot of meds like your daughter is. I hope you are able to find an answer. Smiles, aHi,I have a question. I know this list is for adults with Mito but my question is regarding my 15 y/o. Her symptoms are so much more similar to those of you adults than the children I have read about. She was tested for mito at CC 3 weeks ago. Dr. C believes she has secondary mitochondrial disease to medications and autoimmune disease. She has been on meds for Crohn's Disease, arthritis and many other diagnosis for 6 years. We are waiting test results before we can treat.My question is this. Is fatigue a big issue for those of you with mito(primary or secondary). I suspect her extreme fatigue could be mito or from her neurontin(tremors) or ativan(meniere's). Both these drugs have been added since January. She had fatigue before but not this severe. The other part of the equation is that she decreased her Prednisone dose to 5mg every other day at the same time.We are also awaiting results from a sleep study for suspected sleep apnea. So there are many reasons why she could be tired.Her neuro was frustrating today since he questioned whether she could be suffering depression (as you know folks wax and wane out of depressions). She is not depressed and has never been diagnosed with depression. I am certain she is not depressed. Fortunately, Dr. C saw she was tired and attritubuted that to either her meds, sleep or mito. I just needed to vent on this. I know the neuro has to consider this but come on, he just got done saying that neurontin can cause tiredness. We even tried taking her off it and couldn't because her tremor was too bad.Thanks for any input. I do hope you won't mind me posting here.Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hi everyone, I mostly lurk on this list so most of you don't know me but I have been a member for quite some time. I'm really having some trouble with fatigue lately and I'm hoping someone can help. The last week or two, my energy level totally crashes shortly after lunch. Sometimes it takes several hours to get my energy back up and other times it just doesn't return until the following morning. I'm a teacher and I've been on break so it hasn't been too much of a problem to work around it. But I go back to work on Monday and I'm really concerned about how I'm going to manage. Any ideas? nne ~~Life is a grindstone. Whether it grinds you down or polishes you up, depends upon what you're made of.~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hi nne One thing to possibly look at would be your adrenals....One can experience severe fatigue when the adrenals are low....also B12 deficiency. Hope that helps a bit fatigue Hi everyone, I mostly lurk on this list so most of you don't know me but I have been a member for quite some time. I'm really having some trouble with fatigue lately and I'm hoping someone can help. The last week or two, my energy level totally crashes shortly after lunch. Sometimes it takes several hours to get my energy back up and other times it just doesn't return until the following morning. I'm a teacher and I've been on break so it hasn't been too much of a problem to work around it. But I go back to work on Monday and I'm really concerned about how I'm going to manage. Any ideas? nne ~~Life is a grindstone. Whether it grinds you down or polishes you up, depends upon what you're made of.~~ Get a free MP3 every day with the Spinner.com Toolbar. Get it Now. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.