Chronic Fatigue Syndrome Community
Getting a CFS diagnosis probably felt exhausting. Get support from others ... more
How long do your symptoms last?
An_241677 posted:
I was just diagnosed with CFS a couple of weeks ago (after, like so many others, going through testing for years), but now know I've been battling it for years, I just never connected all the symptoms to CFS. This recent flare-up has been the worst. The exhaustion is constant, muscle pain is frequent, memory problems have begun and I can't do anything even mildly strenuous without feeling completely wiped out afterwards. The memory problems are infrequent, does anyone else experience this? And the muscle pain, although constant in some places, comes and goes in others.I guess my question is, can I expect constant pain 24/7?
9 Replies |Watch This Discussion | Report This| Share this:How long do your symptoms last?I was just diagnosed with CFS a couple of weeks ago (after, like so many others, going through testing for years), but now know I've been battling it for years, I just never connected all the symptoms to CFS. This recent flare-up has been the worst. The exhaustion is constant, muscle pain is frequent, memory problems have begun and I can't do anything even mildly strenuous without feeling completely wiped out afterwards. The memory problems are infrequent, does anyone else experience this? And the muscle pain, although constant in some places, comes and goes in others.I guess my question is, can I expect constant pain 24/7?
Sergiokay responded:
Hello An_241677 
,
I am a 40 year old male and currently and fortunately do not suffer from pains or memory loss just constant exhaustion.
I have quite a photographic memory. However it is not perfect of course so to keep it in shape I carry out a particular memory exercise like you would do a physical exercise.
Example: I like movies quit a bit and when I cannot remember the name of an actor or actress that I know for sure that I know their name and is in my mental hard drive (memory) some where, I do not look it up on the internet.
What I do is I go through the alphabet in my mind until I find the name. Sometimes it takes me minutes, sometimes It tires me and can take me hours or days.
So much for my photographic memory right? hahaha.
I do not know if this type of mental exercise will help you (consult your doctor first), I just wanted to share it with you.
All the best and I hope you get better very soon.
Kindest regards,
Sergio
,I am a 40 year old male and currently and fortunately do not suffer from pains or memory loss just constant exhaustion.
I have quite a photographic memory. However it is not perfect of course so to keep it in shape I carry out a particular memory exercise like you would do a physical exercise.
Example: I like movies quit a bit and when I cannot remember the name of an actor or actress that I know for sure that I know their name and is in my mental hard drive (memory) some where, I do not look it up on the internet.
What I do is I go through the alphabet in my mind until I find the name. Sometimes it takes me minutes, sometimes It tires me and can take me hours or days.
So much for my photographic memory right? hahaha
.I do not know if this type of mental exercise will help you (consult your doctor first), I just wanted to share it with you.
All the best and I hope you get better very soon.
Kindest regards,
Sergio
Report This| Share this:How long do your symptoms last?Hello An_241677 <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">,<br /> <br /> I am a 40 year old male and currently and fortunately do not suffer from pains or memory loss just constant exhaustion. <br /> <br /> I have quite a photographic memory. However it is not perfect of course so to keep it in shape I carry out a particular memory exercise like you would do a physical exercise.<br /> <br /> Example: I like movies quit a bit and when I cannot remember the name of an actor or actress that I know for sure that I know their name and is in my mental hard drive (memory) some where, I do not look it up on the internet. <br /> <br /> What I do is I go through the alphabet in my mind until I find the name. Sometimes it takes me minutes, sometimes It tires me and can take me hours or days.<br /> <br /> So much for my photographic memory right? hahaha <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">.<br /> <br /> I do not know if this type of mental exercise will help you (consult your doctor first), I just wanted to share it with you.<br /> <br /> All the best and I hope you get better very soon.<br /> <br /> Kindest regards,<br /> <br /> Sergio <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Sergiokay responded:
Hello again An_241677 ,
I have posted this probably stupid question quite a few times in this community and have not yet received any answers
, would you be so kind as to share your thoughts with me on this one?
An_241677, would you say that CFS is what the medical world calls the condition of always being fatigued and exhausted, because it has not yet been able to properly diagnose the many and diverse conditions that have chronic fatigue and exhaustion as the main symptom but have many other different symptoms also and has just put them under one big diagnostic umbrella called CFS?
I ask you this because reading through the posts and replies, I am able to see that we all share the fatigue and exhaustion part but many of us have other different symptoms that some of us share and others do not, that would indicate that there are other conditions/syndromes/illnesses that we could have but like I say they have not yet been discovered and have all been called CFS.
What do you think?
Hugs and kisses,
Sergio
,I have posted this probably stupid question quite a few times in this community and have not yet received any answers
, would you be so kind as to share your thoughts with me on this one?An_241677, would you say that CFS is what the medical world calls the condition of always being fatigued and exhausted, because it has not yet been able to properly diagnose the many and diverse conditions that have chronic fatigue and exhaustion as the main symptom but have many other different symptoms also and has just put them under one big diagnostic umbrella called CFS?
I ask you this because reading through the posts and replies, I am able to see that we all share the fatigue and exhaustion part but many of us have other different symptoms that some of us share and others do not, that would indicate that there are other conditions/syndromes/illnesses that we could have but like I say they have not yet been discovered and have all been called CFS.
What do you think?
Hugs and kisses,
Sergio
Report This| Share this:How long do your symptoms last?Hello again An_241677 <img src=http://img.webmd.com/community/images/smile.gif class=post_img />,<br /><br />I have posted this probably stupid question quite a few times in this community and have not yet received any answers <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0">, would you be so kind as to share your thoughts with me on this one?<br /><br />An_241677, would you say that CFS is what the medical world calls the condition of always being fatigued and exhausted, because it has not yet been able to properly diagnose the many and diverse conditions that have chronic fatigue and exhaustion as the main symptom but have many other different symptoms also and has just put them under one big diagnostic umbrella called CFS?<br /> <br /> I ask you this because reading through the posts and replies, I am able to see that we all share the fatigue and exhaustion part but many of us have other different symptoms that some of us share and others do not, that would indicate that there are other conditions/syndromes/illnesses that we could have but like I say they have not yet been discovered and have all been called CFS.<br /><br />What do you think?<br /><br />Hugs and kisses,<br /><br />Sergio <img src=http://img.webmd.com/community/images/smile.gif class=post_img />
jimalee responded:
AN_241677,
I was diagnosed with CFS and have had it for 3 years. I think that you will find that the symptoms will be dramatically different for each person. It is very important that you have doctors that really understand your case. Do not accept the answer that nothing can be done, because their are certain things that can be done, depeneding on your case. Yes, the pain can come and go, but it can stay for months or years. I have a great deal of cognitive and memory issues that are constant. But I am working with a great neurologist and CFS doctor.
I am currently on a trial program that seems to be helping me.
I was diagnosed with CFS and have had it for 3 years. I think that you will find that the symptoms will be dramatically different for each person. It is very important that you have doctors that really understand your case. Do not accept the answer that nothing can be done, because their are certain things that can be done, depeneding on your case. Yes, the pain can come and go, but it can stay for months or years. I have a great deal of cognitive and memory issues that are constant. But I am working with a great neurologist and CFS doctor.
I am currently on a trial program that seems to be helping me.
Report This| Share this:How long do your symptoms last?AN_241677,<br />I was diagnosed with CFS and have had it for 3 years. I think that you will find that the symptoms will be dramatically different for each person. It is very important that you have doctors that really understand your case. Do not accept the answer that nothing can be done, because their are certain things that can be done, depeneding on your case. Yes, the pain can come and go, but it can stay for months or years. I have a great deal of cognitive and memory issues that are constant. But I am working with a great neurologist and CFS doctor.<br />I am currently on a trial program that seems to be helping me.
Hello jimalee ,
Are you able to go into a little more detail as to what the trial program entails and who the CFS doctor is? I would be very interested.
Many thanks in advance.
All the best and I hope the program continues to help you.
Kindest regards,
Sergio
,Are you able to go into a little more detail as to what the trial program entails and who the CFS doctor is? I would be very interested.
Many thanks in advance.
All the best and I hope the program continues to help you.
Kindest regards,
Sergio
Report This| Share this:How long do your symptoms last?Hello jimalee <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">,<br /><br />Are you able to go into a little more detail as to what the trial program entails and who the CFS doctor is? I would be very interested.<br /><br />Many thanks in advance.<br /><br />All the best and I hope the program continues to help you.<br /><br />Kindest regards,<br /><br />Sergio <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Sergio,
My doctor is Dr. Joseph Brewer in the Kansas City Area. He is almost impossible to get in to see as he is really not taking new patients.
My problem has been diagnosed as CFS caused by mitochondrial dysfunction. I was diagnosed with CFS at Mayo in Rochester after 10 days of diagnostics.The mito issue was discovered by Dr. Brewer and was probably caused or made worse by over 10 years of statin use. Brewer has me on a "mito" Cocktail which is nothing more than very high doses of unbiquinol, L-Cartine, Creatine, B Complex, PPQ and others. After three months, I am seeing improvement.
A very interesting program and he has several patients on it. You can read about mito and CFS at www.curemito.org and you can read about statin issues on www.spacedoc.com .
Jim
My doctor is Dr. Joseph Brewer in the Kansas City Area. He is almost impossible to get in to see as he is really not taking new patients.
My problem has been diagnosed as CFS caused by mitochondrial dysfunction. I was diagnosed with CFS at Mayo in Rochester after 10 days of diagnostics.The mito issue was discovered by Dr. Brewer and was probably caused or made worse by over 10 years of statin use. Brewer has me on a "mito" Cocktail which is nothing more than very high doses of unbiquinol, L-Cartine, Creatine, B Complex, PPQ and others. After three months, I am seeing improvement.
A very interesting program and he has several patients on it. You can read about mito and CFS at www.curemito.org and you can read about statin issues on www.spacedoc.com .
Jim
Report This| Share this:How long do your symptoms last?Sergio,<br />My doctor is Dr. Joseph Brewer in the Kansas City Area. He is almost impossible to get in to see as he is really not taking new patients.<br />My problem has been diagnosed as CFS caused by mitochondrial dysfunction. I was diagnosed with CFS at Mayo in Rochester after 10 days of diagnostics.The mito issue was discovered by Dr. Brewer and was probably caused or made worse by over 10 years of statin use. Brewer has me on a "mito" Cocktail which is nothing more than very high doses of unbiquinol, L-Cartine, Creatine, B Complex, PPQ and others. After three months, I am seeing improvement. <br /> <br />A very interesting program and he has several patients on it. You can read about mito and CFS at <a rel="nofollow" href="http://www.curemito.org">www.curemito.org</a> and you can read about statin issues on <a rel="nofollow" href="http://www.spacedoc.com">www.spacedoc.com</a> .<br /> <br /> <br />Jim
Hello Jim ,
Thank you ever so much for the information.
I will get cracking on those links you have kindly provided..
Take care and keep in touch here.
Kindest reagards,
Sergio
,Thank you ever so much for the information.
I will get cracking on those links you have kindly provided..
Take care and keep in touch here.
Kindest reagards,
Sergio
Report This| Share this:How long do your symptoms last?Hello Jim <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">,<br /><br />Thank you ever so much for the information.<br /><br />I will get cracking on those links you have kindly provided..<br /><br />Take care and keep in touch here.<br /><br />Kindest reagards,<br /><br />Sergio <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Hello again Jim ,
Apologies for the many personal questions.
I have one more if I please may.
Are you able to fully disclose the full list of ingredients that the "mito" Cocktail is composed of?
Many thanks.
Kindest regards,
Sergio
,Apologies for the many personal questions.
I have one more if I please may.
Are you able to fully disclose the full list of ingredients that the "mito" Cocktail is composed of?
Many thanks.
Kindest regards,
Sergio
Report This| Share this:How long do your symptoms last?Hello again Jim <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">,<br /><br />Apologies for the many personal questions.<br /><br />I have one more if I please may.<br /><br />Are you able to fully disclose the full list of ingredients that the "mito" Cocktail is composed of?<br /><br />Many thanks.<br /><br />Kindest regards,<br /><br />Sergio <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Sergio,
The actual ingredients and dosage will vary with each person. Some of the dosages taken are quite high and must be monitored by testing.
Here are my BASIC indgredients:
Ubiquinol -300mg (Note: ubiquinol not regular coq10
PPQ
L-Carnitine
Super B Complex
Creatine
Vitimin E
Folic Acid
Then I take many other script meds for other CFS issues.
Jim
The actual ingredients and dosage will vary with each person. Some of the dosages taken are quite high and must be monitored by testing.
Here are my BASIC indgredients:
Ubiquinol -300mg (Note: ubiquinol not regular coq10
PPQ
L-Carnitine
Super B Complex
Creatine
Vitimin E
Folic Acid
Then I take many other script meds for other CFS issues.
Jim
Report This| Share this:How long do your symptoms last?Sergio,<br />The actual ingredients and dosage will vary with each person. Some of the dosages taken are quite high and must be monitored by testing.<br />Here are my BASIC indgredients:<br />Ubiquinol -300mg (Note: ubiquinol not regular coq10<br />PPQ<br />L-Carnitine<br />Super B Complex<br />Creatine<br />Vitimin E<br />Folic Acid<br /> <br />Then I take many other script meds for other CFS issues.<br />Jim
Hello Jim ,
Thank you very much for giving us the list.
You are a true star.
I hope you keep on getting better
Take care and keep in touch.
Kindest regards,
Sergio
,Thank you very much for giving us the list.
You are a true star.
I hope you keep on getting better
Take care and keep in touch.
Kindest regards,
Sergio
Report This| Share this:How long do your symptoms last?Hello Jim <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">,<br /><br />Thank you very much for giving us the list.<br /><br />You are a true star.<br /><br />I hope you keep on getting better<br /><br />Take care and keep in touch.<br /><br />Kindest regards,<br /><br />Sergio <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
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