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Chronic Fatigue Syndrome Community

Getting a CFS diagnosis probably felt exhausting. Get support from others ... more

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Quiz: Is it Fatigue or Something Else?

http://women.webmd.com/rm-quiz-fatigue-something-else

Feeling tired but not sure you have Chronic Fatigue? Some insight can be found via the link above...

Posted by Caprice_WebMD_Staff

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4 of 6 found this Resource helpful

0 Replies | ReplyReport This| Share this:Quiz: Is it Fatigue or Something Else? Feeling tired but not sure you have Chronic Fatigue? Some insight can be found via the link above...

A Visual Guide to Chronic Fatigue Syndrome

http://www.webmd.com/chronic-fatigue-syndrome/slideshow-c...

Check out this WebMD slideshow!

Posted by Caprice_WebMD_Staff

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6 of 8 found this Resource helpful

2 Replies | ReplyReport This| Share this:A Visual Guide to Chronic Fatigue Syndrome Check out this WebMD slideshow!

Reply: No diagnosis yet

This is the criteria for a diagnosis... To be diagnosed with CFS, patients must meet both of the...

Posted by peace_harmony

1 Reply | Reply | Watch This Discussion Report This | Share this:No diagnosis yet This is the criteria for a diagnosis... To be diagnosed with CFS, patients must meet both of the...

Reply: I'm a newbie here, but not to CFS/CFIDS

Hi there Finding my Way - Sorry for the delay, I only just got notification you had posted. I'm sorry to...

Posted by peace_harmony

Hi there Finding my Way -
Sorry for the delay, I only just got notification you had posted.
I'm sorry to hear of your struggles. There will be ups and downs with this. Keep track of your days in a pain journal, it may come in handy later. See only MDs or DOs not ARNP or PA. SSDI does not recognize anything but "real" doctors. That being said, if your insurance covers seeing a naturopath, please do go there as a specialist. I've only been twice but so far the one I am seeing has more knowledge about CFS than my other docs and specialists put together. From that I can pass along a couple thoughts. While I understand your thought process on fruits and veggies what most of us with this issue really need is protein and a lot of it! My dieticians from my endo and bariatric surgery both had me doing lots of veggies and fruits and I never felt worse! I've gone back to what I instinctively knew was best, lots of lean protein, protein smoothies made with non dairy liquid and tubes of protein in water (I like proasis brand). ND(naturopath) confirmed that was correct and to ignore the dieticians because they are one trick ponies. So, try cutting way back on fruit (have you ever heard of the FODMAP diet? - check it out)...eat only veggies that grow above ground. Eat mostly good fats, olive oil, etc. and load up on lean or grass fed protein. Easy stuff for me is rotisserie chicken from the groc store - check their ingredient list for MSG (essentially deadly stuff for us) and if it's MSG free then get 3 or 4 of them a week, debone if you like and freeze it in 1-2 day packs. I do 1/2 chicken in each but I have an 8 oz stomach. Also, homemade chili, stews, soups are good. You're looking for about 1 gm protein for each lb of what your "normal" body weight is for your height/build. For example, I weigh 221 (down from 335) but my "normal" would be about 140 so I aim for 140 gms of protein a day and 100 oz of liquid, mostly water and tea. Generally you want to eat every 2 to 2 1/2 hrs while you are awake. Always protein first, then veggies and if you gotta have fruit then just a bit of low glycemic load fruit like berries. Fruit sugar can really cause a lot of inflammation! Also, if you have stomach issues, rule out gluten intolerance. Some of us are just so sensitive that we end up getting intolerances like crazy. Eating gluten when you are intolerant can lead to 'leaky gut' where the wrong molecules get through into our blood (google if you want to know more). Also, see if going non dairy helps. Additionally I will presume you don't smoke because, well, lets face it, that's a big strain on the body to start with.
I read something yesterday (can't find where) that said some folks with this illness go into remission during the first 5 yrs and it never comes back. I hope you are one of those people. Until then, you can still hang out with your son; just in different ways. Find a hobby you can do together sitting. Puzzles, models, heck even video games. It's the time together that counts. My grandsons know I'm the quiet Gramma. I'm the one they read books with, play board games, etc. You'll be teaching him to see people more deeply and to accept their limits. Not a bad thing. Here is a link to the CFIDS FB page. Lots of good stuff there. https://www.facebook.com/CFIDSAssn?hc_location=stream View Thread

Posted by peace_harmony

2 Replies | Reply | Watch This Discussion Report This | Share this:I'm a newbie here, but not to CFS/CFIDS Hi there Finding my Way - Sorry for the delay, I only just got notification you had posted. I'm sorry to...

Reply: Group home for Chronic Fatigue?

Red_Evelyn, Thats funny stuff! and that's just about right on the money too.

Posted by smann68

5 Replies | Reply | Watch This Discussion Report This | Share this:Group home for Chronic Fatigue? Red_Evelyn, Thats funny stuff! and that's just about right on the money too.

Reply: Chronic Fatigue Syndrome and Epstein Barr Virus Li...

Unfortunately for many of us, science is pretty convincing that EBV is not what causes CFS but it may be...

Posted by peace_harmony

Unfortunately for many of us, science is pretty convincing that EBV is not what causes CFS but it may be something similar that has not been found out yet. http://emedicine.medscape.com/article/235980-overview
I felt the same for years, I still wonder if I picked up something from a blood transfusion at at 9 and it sat until it triggered later when I had a bout of herpangina. It really does appear that most of us have a particular viral episode we can point to as our trigger point (pun intended for MPS sufferers like myself). Whether we're born with this thing inside of us, we acquire it somehow through nature or chemical issues from food or environment or we all caught the same virus at some point during a routine cold or flu...who knows? I've had this thing for 20 yrs now. I had it back when it was first called "post viral fatigue syndrome". I can tell you there are great books to help you feel better and mostly what you are looking for is anything to help Inflammation and Leaky gut. "The Inflammation Syndrome" would be a good first read. Get the inflammation down and it's not going to cure you but it will really help. It requires a strict diet but most of us with this illness understand that is part of this for life. Mess up the food, mess up the body. One serving of grains has me in incredible pain with brain fog for days. Sugar, forget it. It's the most inflammatory thing you can put in your mouth. Another thing that helps is gentle exercise. Even if all you can do is stretch after a shower or bath when your muscles are loose, try to do it a bit daily. Mine is swimming in warm water when I can get there.

Some thoughts as you are on this journey.
Keep a pain journal.
Should you need to go for SSDI this will be helpful.
When you go to your doctor, be sure you see an MD or a DO, not an ARNP or PA. If you end up needing SSDI, the gov't doesn't like anything but "real" doctors on your files. When you see your doctors or specialists be sure they note your pain levels each time you go. Office notes can be sketchy and they are important.
Get all the PT you can afford. Massage is particularly helpful at keeping things moving for me. It's soothing for body and soul.
Ok, that's all I have for the moment. My hands are giving out and hubby is sleeping so I don't want to use my dragon naturally speaking software and wake him.
peace
GraceView Thread

Posted by peace_harmony

3 Replies | Reply | Watch This Discussion Report This | Share this:Chronic Fatigue Syndrome and Epstein Barr Virus Linkage?? Unfortunately for many of us, science is pretty convincing that EBV is not what causes CFS but it may be...

Reply: Ready to leave this World, don't know if I can han...

Oh, my name is Grace.

Posted by peace_harmony

2 Replies | Reply | Watch This Discussion Report This | Share this:Ready to leave this World, don't know if I can handle the pain anymore Oh, my name is Grace.

Reply: treatment

I too have had these same symptoms for the last few years. I have been on Cymbalta and know how...

Posted by findingpeacewithpain

1 Reply | Reply Report This | Share this:treatment I too have had these same symptoms for the last few years. I have been on Cymbalta and know how...

Cervical disc herniated disc do not need to go to ...

Herniated disc, cervical disc without having to go to the hospital themselves, without the side effects can be...

Posted by Kharma

Was this Helpful?

0 of 0 found this Tip helpful

0 Replies | ReplyReport This| Share this:Cervical disc herniated disc do not need to go to the hospital Herniated disc, cervical disc without having to go to the hospital themselves, without the side effects can be...

Taming the Toxic Takeover

Hey there! I would like to share my story with you and then ask for your help. I was diagnosed with...

Posted by kingdom_advancer

0 Replies | Reply | Watch This Discussion Report This | Share this:Taming the Toxic Takeover Hey there! I would like to share my story with you and then ask for your help. I was diagnosed with...

Reply: medicines prescribed for CFS?

It is "off label" if you will. However, there is no med approved by FDA for Tx of CFS/Fibro...so the...

Posted by thrawnms14

2 Replies | Reply | Watch This Discussion Report This | Share this:medicines prescribed for CFS? It is "off label" if you will. However, there is no med approved by FDA for Tx of CFS/Fibro...so the...

Reply: Medicinal Treatment for CFS

Butterfly, thanks for sharing your info on the subject. I will def check out the CDC website! Sincerely,...

Posted by thrawnms14

4 Replies | Reply | Watch This Discussion Report This | Share this:Medicinal Treatment for CFS Butterfly, thanks for sharing your info on the subject. I will def check out the CDC website! Sincerely,...

Reply: Can't live this way anymore

Thank you for your reply. Men do get fibro...we are in the minority...woman are reported to have fibro in...

Posted by thrawnms14

15 Replies | Reply | Watch This Discussion Report This | Share this:Can't live this way anymore Thank you for your reply. Men do get fibro...we are in the minority...woman are reported to have fibro in...

Reply: Hanging in there.

Thank You! Did you want to talk by phone? You left a number. Please let me know

Posted by thrawnms14

2 Replies | Reply | Watch This Discussion Report This | Share this:Hanging in there. Thank You! Did you want to talk by phone? You left a number. Please let me know

Reply: Medicine for CFS?

Honestly, I take 10 mg Vicodin. I also have all-over body pain and aches, and nothing else seems to work. ...

Posted by Storm_dancer

3 Replies | Reply | Watch This Discussion Report This | Share this:Medicine for CFS? Honestly, I take 10 mg Vicodin. I also have all-over body pain and aches, and nothing else seems to work. ...

tired of being tired

I have been diagnosed with Adrenal fatigue syndrome. My Adrenal glands have shut down, and instead, other...

Posted by Storm_dancer

0 Replies | Reply | Watch This Discussion Report This | Share this:tired of being tired I have been diagnosed with Adrenal fatigue syndrome. My Adrenal glands have shut down, and instead, other...

Reply: How many people have developed CFS symptoms after ...

The funny thing is that I have developed the majority of symptoms of this syndrome before I began to...

Posted by sleepybeauty

4 Replies | Reply | Watch This Discussion Report This | Share this:How many people have developed CFS symptoms after EBV infection? The funny thing is that I have developed the majority of symptoms of this syndrome before I began to...

Need to help a friend

Hello, I was just wondering if anyone can help me. A friend of mine has developed chronic pain in the last...

Posted by gowings42

0 Replies | Reply | Watch This Discussion Report This | Share this:Need to help a friend Hello, I was just wondering if anyone can help me. A friend of mine has developed chronic pain in the last...

Reply: Over it!!!

Hi Lottie, I understand. I have had for at least 20 years. Try to stay positive and always search for new...

Posted by saffron123

2 Replies | Reply | Watch This Discussion Report This | Share this:Over it!!! Hi Lottie, I understand. I have had for at least 20 years. Try to stay positive and always search for new...

Reply: Phentermine for CFS

Sorry it took so long to get back to you -- I was away with bad internet service Anyway, Phentermine...

Posted by alamopokeymom

5 Replies | Reply | Watch This Discussion Report This | Share this:Phentermine for CFS Sorry it took so long to get back to you -- I was away with bad internet service Anyway, Phentermine...

Treatment for Chronic Fatigue Syndrome?

Ok I guess I'll just ask these questions before I post the kind of proposed treatment. 1. What drugs or what...

Posted by Euphorics

Ok I guess I'll just ask these questions before I post the kind of proposed treatment.
1. What drugs or what could be used to help do this? I read that these drugs already exist. I know this is not a legitimate treatment, but could it possible be? I'm so desperate I don't really care what it takes. Just want some thoughts of whether this could actually work?

ANyways thank you so much for just reading or if you could possibly help it would mean everything

The hypothalamic-pituitary-adrenal (HPA) axis is a major system maintaining body homeostasis by regulating the neuroendocrine and sympathetic nervous systems as well modulating immune function. Recent work has shown that the complex dynamics of this system accommodate several stable steady states, one of which corresponds to the hypocortisol state observed in patients with chronic fatigue syndrome (CFS). At present these dynamics are not formally considered in the development of treatment strategies. Here we use model-based predictive control (MPC) methodology to estimate robust treatment courses for displacing the HPA axis from an abnormal hypocortisol steady state back to a healthy cortisol level. This approach was applied to a recent model of HPA axis dynamics incorporating glucocorticoid receptor kinetics. A candidate treatment that displays robust properties in the face of significant biological variability and measurement uncertainty requires that cortisol be further suppressed for a short period until adrenocorticotropic hormone levels exceed 30% of baseline. Treatment may then be discontinued, and the HPA axis will naturally progress to a stable attractor defined by normal hormone levels. Suppression of biologically available cortisol may be achieved through the use of binding proteins such as CBG and certain metabolizing enzymes, thus offering possible avenues for deployment in a clinical setting. Treatment strategies can therefore be designed that maximally exploit system dynamics to provide a robust response to treatment and ensure a positive outcome over a wide range of conditions. Perhaps most importantly, a treatment course involving further reduction in cortisol, even transient, is quite counterintuitive and challenges the conventional strategy of supplementing cortisol levels, an approach based on steady-state reasoning.

This is the site from which it came from and more information on the treatment here:
http://www.ploscompbiol.org/article/info%3Adoi%2F10.1371%2Fjournal.pcbi.1000273 View Thread

Posted by Euphorics

0 Replies | Reply | Watch This Discussion Report This | Share this:Treatment for Chronic Fatigue Syndrome? Ok I guess I'll just ask these questions before I post the kind of proposed treatment. 1. What drugs or what...

Reply: Healing from a fracture

The healing time for broken bones is influenced by a number of variables that nutrition can impact...

Posted by allendbrook

2 Replies | Reply | Watch This Discussion Report This | Share this:Healing from a fracture The healing time for broken bones is influenced by a number of variables that nutrition can impact...

Reply: Things to do when you're bored

Nice list. What about watching videos with a friend on http://Nestin.TV ?

Posted by gilbertl123

9 Replies | Reply | Watch This Discussion Report This | Share this:Things to do when you're bored Nice list. What about watching videos with a friend on http://Nestin.TV ?

Reply: Looking for Others with CFS CFIDS ME

try not to over do it if you start slow and do little bit of exsise like i to on wii it keeps log so if you...

Posted by thorzeen

5 Replies | Reply | Watch This Discussion Report This | Share this:Looking for Others with CFS CFIDS ME try not to over do it if you start slow and do little bit of exsise like i to on wii it keeps log so if you...

just hang in there

first started having problems filling like i got the flue all the time started about 25 white blood cell...

Posted by An_245490

0 Replies | Reply | Watch This Discussion Report This | Share this:just hang in there first started having problems filling like i got the flue all the time started about 25 white blood cell...

Reply: It's been a long time

I am a newbie but would love to see this site active. We need all the support we can get!!

Posted by lbagain

6 Replies | Reply | Watch This Discussion Report This | Share this:It's been a long time I am a newbie but would love to see this site active. We need all the support we can get!!

Reply: Question

People can experience varied symptoms but the most telling factor with CFS is extreme fatigue experienced...

Posted by bunnyj02

2 Replies | Reply Report This | Share this:Question People can experience varied symptoms but the most telling factor with CFS is extreme fatigue experienced...

Reply: Not yet diagnosed

I had suffered for years before a doctor would believe me and then told me I had M.E/CFS. There is a light...

Posted by bunnyj02

18 Replies | Reply | Watch This Discussion Report This | Share this:Not yet diagnosed I had suffered for years before a doctor would believe me and then told me I had M.E/CFS. There is a light...

Reply: CHRONIC FATIGUE/FIBROMYALGIA

There is a light at the end the tunnel for CFS. Its called EPIGENETICS. AT LAST!!! an answer to our illness....

Posted by bunnyj02

2 Replies | Reply | Watch This Discussion Report This | Share this:CHRONIC FATIGUE/FIBROMYALGIA There is a light at the end the tunnel for CFS. Its called EPIGENETICS. AT LAST!!! an answer to our illness....

Reply: Could it be?

Thank you Painfully Exhausted for responding to my post. Your story touched me deeply. I too have a...

Posted by StressedButBlessed

2 Replies | Reply | Watch This Discussion Report This | Share this:Could it be? Thank you Painfully Exhausted for responding to my post. Your story touched me deeply. I too have a...

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