# does anyone have chronic fatigue syndrome?



## kev15

A person in the medical field said that I may have CFS, after i told them my symptoms. I have had these symptoms for about a year and a half to two years. I have extreme fatigue and feel tired and exhausted all the time. It doesn't matter how much sleep I have or if I/or don't take naps. I wake up feeling terribly exhausted, like I haven't slept at all. I NEVER feel totally awake and refreshed. I struggle to work and fight through exhaustion throughout the day. I can barely keep my eyes open throughout the day. This obviously affects my work/ especially since I am a teacher. When I get home I have to go straight to the bed and lay down. I have to set my alarm or I will sleep all evening. After an hour or two I try and get up and go work out for an hour. Sometimes I am able to, sometimes not. I walk in a haze constantly. I have ibs, anexity, night sweats, stomach pain, nasesea, confusion, and other symptoms. I hate that it affects my time with my family and work. Does anyone have thoughts about this? I haven't been to my gp yet. Thanks!


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## Kathleen M.

It is fairly common for people with IBS to have issues with CFS (or the other way around...kind of a chicken and an egg situation).Because of this we have a CFS and Fibromyalgia (another thing that often is found with IBS) section of the board. I'm going to move this down there so the people who have issues with this and post there may be more likely to see it.One other thing to look at is sleep disorders. Things like sleep apnea can cause someone to feel they never get refreshing sleep. You can also have that in combination with other things, but excessive daytime sleepiness is usually a clue to at least look at that, especially if anyone ever mentions that you snore.


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## M&M

It sounds like you haven't really started investigating the cause of your fatigue...There are so many things that can make you completely and totally exhausted. It is one of the absolutely _most common_ symptoms people talk to their doctors about. I would definitely bring it up with your GP, and do some testing to see what is going on and what might be causing your exhaustion/fatigue. Things like anemia, allergies, viral infection, diabetes, sleep disorders, etc can all cause that kind of severe fatigue - but are also very, very treatable. Hopefully you and your GP will be able to get to the bottom of what is causing your fatigue and then do something about it!


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## kev15

Thank you for all your help. I hate going to the doctor for another symptom, because they often look at me as a hypocondreact. Its pretty frustrating. I try and give the doctors only my worse symptom or two, because they start to zone me out the more symptoms I present to them. I am sure that most everyone with ibs has had similar experiences, which makes it even more hard for us to discuss all of our symptoms with our doctor (especially us men). This is terrible since there is a huge importance of giving your doctor all of your symptoms. It seems like a catch twenty-two.


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## MaryAnn51

Hi - I have Fibromyalgia and ibs and a host of other "ailments". IBS is very common with those of us diagnosed with Fibromyalgia and CFS. Its very hard to get a diagnosis. However, I would say compared to 25 years ago, its diagnosed much faster these days. I went from doctor to doctor for 8 years before being properly diagnosed. And, FM and CFS are really diagnosed after everything else it could be is ruled out. Its very hard to find compassionate doctors and ones that believe in FM/CFS and are willing to help you. Sleep studies are done very often these days and should be because most of us with FM/CFS have sleeping problems. It may sound crazy, but keep changing doctors until you find one that is willing to help you. Don't give up. MaryAnn


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## Diana63

I have had CFS for 11years,i suffered with symptoms for a year then i was diagnosed with it.I went through various blood tests and an endoscopy before being diagnosed.I would go to the doctor and be adamant about how you are feeling and get bloods taken to see if it is anything else that could be making you feel exhausted.As Maryann said find a doctor who is willing to listen and understand,i was lucky my doctor was very good.I also suffer with severe ibs which i have had for over 20years.Good luck.


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## M&M

A good piece of advice that helped me a lot was keeping a detailed symptom journal. Record all your symptoms everyday, and rate them on a scale of 1-10, or whatever works for you. Sometimes, if you go to a doctor and say “I’m tired all the time, I’m in terrible pain all the time, I have a constant headache, etc” they tend to look at you cross. However, if you can produce a detailed symptom journal and say “My fatigue was a 5 after resting most of the day on Tuesday, but by Friday it was up to a 9 because...” it does seem to make it easier for doctors to take your symptoms more seriously. This is something I recommend to all patients dealing with any kind of chronic or difficult to diagnose issue. It really is the #1 thing to help you help your doctor. And it’s true, sometimes you just have to find the right doctor.Best wishes!


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## Lookin'foraLife

I just began CFS symptoms after suffering with IBS-C for 3 years.I'm doing the doctor rounds but so far nobody has a clue what's causing it.How come CFS occurs frequently witb IBS? What's the connection?What helps with CFS?


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## s.m.

Lookin said:


> I just began CFS symptoms after suffering with IBS-C for 3 years.I'm doing the doctor rounds but so far nobody has a clue what's causing it.How come CFS occurs frequently witb IBS? What's the connection?What helps with CFS?


 I Also have IBS- C and fibromyalgia and CFS.. Life is diffucly managing all problems inone go.. My quality of Life is getting worse day by day.. I hope i had a magic stick which could get back a good digestion and no associated pains/aches/gas/faltulence


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## Bulbie

I have IBS, fibromyalgia, and cfs. My life is an utter nightmare. There are a few other problems too, but I'm at the point of giving up. No one believes me anymore.


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## Diana63

I have had CFS for 13 years but my severe IBS for many years before and still suffering, so i do not think for me their is a connection,but saying that, both conditions are horrendous!!


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## overitnow

There was a study out of the U Adelaide several years ago that linked IBS with a lowered motility in brain circulation in the quadrant of the brain responsible for digestion. At the time this was published it seemed to point to a reason why the flavonoids, which help increase circulation, were so helpful for me. In researching this further I exchanged emails with the ME Society in the UK. While they, at that time and like most of the IBS researchers, were looking at the effects ofnserotonin, they reported this same lowered circulation in the brain stem of ME sufferers.It might be worth researching what would increase brain circulation.Mark


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## Lookin'foraLife

I've heard some people with CFS are functioning quite well after taking Modafinil,though it's tough getting a prescription for it.Anyone heard of this?


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## Lookin'foraLife

See: http://cfids-cab.org/cfs-inform/Sleep/turkington.etal04.pdf


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## Kali M

Lookin said:


> I've heard some people with CFS are functioning quite well after taking Modafinil,though it's tough getting a prescription for it.Anyone heard of this?


Hi Lookin, I have been on Modafinil since 2005. (Became ill with ME/CFS in 1998, but not diagnosed until 2005). This medication was first developed for pilots in the military - to keep them alert for wartime in case of little sleep. The med may help with cognition and mental energy, but it's not a "transforming" drug. (It doesn't work miracles). I've actually found MORE help from my B12 injections (1000mcg subcutaneous every day). - Yes, I said every day. And Yes, I know that is a HUGE dosage, but in ME/CFS it's needed in those dosages. Sleep meds were also important for many years, but my sleep is now much better (I think, in part, to the B12). Unfortunately, you have to think of ME/CFS folks as having AA batteries, while healthy folks have a flashlight battery. It takes us much less time to empty our energy, and a LOT more time of rest to "recharge." And when we dip into our energy "reserves" (tomorrow's energy, and the day after's energy), we become non-functional until our "batteries" have caught up again (so, that means for 2 hours of riding the roller coaster at Six Flags, you'll spend 2 days in bed). The latter was a hypothetical, and everyone's energy is different, but that's about what I would suffer. If you think of energy in the terms given above, consider taking a stimulate, be it coffee, caffeine pills, or something such as phentermine. For the energy it may initially give you, just remember....you'll eventually have to "recharge." You may get several days - or even several weeks - of energy from it initially....but the "crash" usually will follow; and with me, the crashes last at least as long as the "energetic" periods. So, be careful of what you take, and be very conscientious of your body's response. Ask questions, do your own research, but best of all...find an EXPERT in CFS/ME/FM and use his/her guidance. Best wishes to you. KM


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## Karen29809

Kali M said:


> Hi Lookin, I have been on Modafinil since 2005. (Became ill with ME/CFS in 1998, but not diagnosed until 2005). This medication was first developed for pilots in the military - to keep them alert for wartime in case of little sleep. The med may help with cognition and mental energy, but it's not a "transforming" drug. (It doesn't work miracles). I've actually found MORE help from my B12 injections (1000mcg subcutaneous every day). - Yes, I said every day. And Yes, I know that is a HUGE dosage, but in ME/CFS it's needed in those dosages. Sleep meds were also important for many years, but my sleep is now much better (I think, in part, to the B12). Unfortunately, you have to think of ME/CFS folks as having AA batteries, while healthy folks have a flashlight battery. It takes us much less time to empty our energy, and a LOT more time of rest to "recharge." And when we dip into our energy "reserves" (tomorrow's energy, and the day after's energy), we become non-functional until our "batteries" have caught up again (so, that means for 2 hours of riding the roller coaster at Six Flags, you'll spend 2 days in bed). The latter was a hypothetical, and everyone's energy is different, but that's about what I would suffer. If you think of energy in the terms given above, consider taking a stimulate, be it coffee, caffeine pills, or something such as phentermine. For the energy it may initially give you, just remember....you'll eventually have to "recharge." You may get several days - or even several weeks - of energy from it initially....but the "crash" usually will follow; and with me, the crashes last at least as long as the "energetic" periods. So, be careful of what you take, and be very conscientious of your body's response. Ask questions, do your own research, but best of all...find an EXPERT in CFS/ME/FM and use his/her guidance. Best wishes to you. KM


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## Karen29809

What an excellent description of CFS -- smaller batteries!I have been suffering from CFS/FMS/IBS-D since 2001. Initially this started with a bout of Mono. Tried everything. What worked for me was light exercise, B vitamins, epsom salt baths, rest, probiotics, and regular massage therapy.I struggled to keep working, but in February 2011 I was laid off from my job of over 20 years. (a well paying, but soul-sucking job) Withing 4 months I felt like a new person. I would not say I am CURED, but I feel so much better. What is frustrating is that I went to my doctor and told her this, and she said that it just goes to show that some people are not cut out for the stress of the working world. Yet, when I was sick and thought that I might need to stop working, she would not say I was disabled. I think I am literally disabled from working, but not necessarily disabled from life. I can do many things, just not as much as most people can do, but I am ok with that because I am much better than I was.All my doctors agreed, (cardiologist, gastroenterologist, gyno, gp) that work was making me worse, but they didn't want to "testify in court" so to speak. Well what are people like us supposed to do? Thank goodness I have my husband, but what if I didn't?Has anyone had this experience?


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## Diana63

Hello Karen..I honestly have no idea where or how i got chronic fatigue syndrome,which i have had since 1998 and the doctors and experts also were/are at a loss as well.I had to give up work in the september of 1998 as the condition was making me so ill,but this did not help me to feel in anyway better and all these years on i still suffer with cfs!!along with severe ibs!!I do also have a very supportive husband which i am grateful for.


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## TIGRITSA

Exactly the same, datigue, panic atacs, wishless, no energy. But this time I went to doc, immunoglobin M was low. New blood checks, I am afraid of ....


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## EMilo

Karen29809 said:


> What an excellent description of CFS -- smaller batteries!I have been suffering from CFS/FMS/IBS-D since 2001. Initially this started with a bout of Mono. Tried everything. What worked for me was light exercise, B vitamins, epsom salt baths, rest, probiotics, and regular massage therapy.I struggled to keep working, but in February 2011 I was laid off from my job of over 20 years. (a well paying, but soul-sucking job) Withing 4 months I felt like a new person. I would not say I am CURED, but I feel so much better. What is frustrating is that I went to my doctor and told her this, and she said that it just goes to show that some people are not cut out for the stress of the working world. Yet, when I was sick and thought that I might need to stop working, she would not say I was disabled. I think I am literally disabled from working, but not necessarily disabled from life. I can do many things, just not as much as most people can do, but I am ok with that because I am much better than I was.All my doctors agreed, (cardiologist, gastroenterologist, gyno, gp) that work was making me worse, but they didn't want to "testify in court" so to speak. Well what are people like us supposed to do? Thank goodness I have my husband, but what if I didn't?Has anyone had this experience?


Karen, I went through the rigmarole of registering just so I could reply to you. And you actually posted in 2012 ~ every time I read something helpful on these forums, it's from years ago and I always wonder what the update is.I also had a well-paying, soul-sucking job which I finally had to leave a month ago. I'm a workaholic, never thought it would come to this and, honestly, I thought I would bounce right back after leaving. I haven't. Now I just have no distraction from the hell (CFS+IBS). You do give me some hope, though, that I might feel better in a few months. That is just what I need as I started to feel so hopeless and yesterday had my first ever panic attack (wouldn't wish that on ANYONE).I have had every test done under the sun, thousands of dollars in medical bills and have resigned myself to just what you said: probiotics, B-complex, epsom salt baths and massages. For IBS, I am taking benefiber and colace, but nothing helps ~ I have drenching night sweats and every time there is slight movement or pressure in my bowel, my blood pressure drops, I get nauseous and I have to lie on the floor to keep from passing out. This on top of CFS!My doctors are the same way. I'm not sure what I am going to do financially. Can I ask how old you are and what city you live in? Thanks for the post!


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## Lookin'foraLife

Hi everyone,An update: After trying more things that didn't help, I went back to a specialist and she recommendedI try to get a license for medical cannabis.She believes this will help.I'll give it a try and we'll see.


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## s.m.

EMilo said:


> Karen, I went through the rigmarole of registering just so I could reply to you. And you actually posted in 2012 ~ every time I read something helpful on these forums, it's from years ago and I always wonder what the update is.I also had a well-paying, soul-sucking job which I finally had to leave a month ago. I'm a workaholic, never thought it would come to this and, honestly, I thought I would bounce right back after leaving. I haven't. Now I just have no distraction from the hell (CFS+IBS). You do give me some hope, though, that I might feel better in a few months. That is just what I need as I started to feel so hopeless and yesterday had my first ever panic attack (wouldn't wish that on ANYONE).I have had every test done under the sun, thousands of dollars in medical bills and have resigned myself to just what you said: probiotics, B-complex, epsom salt baths and massages. For IBS, I am taking benefiber and colace, but nothing helps ~ I have drenching night sweats and every time there is slight movement or pressure in my bowel, my blood pressure drops, I get nauseous and I have to lie on the floor to keep from passing out. This on top of CFS!My doctors are the same way. I'm not sure what I am going to do financially. Can I ask how old you are and what city you live in? Thanks for the post!


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## s.m.

IBS is messing my life...I get tired easily...Feel no energy in morning and eating enery foods or drnks also doesnt help...fibromyaglgia has added to the disgust....


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## sheridragonflys

My husband and I both have CFS along with Fibromyalgia and neuropathy...and multiple chemical sensitivity illness..over15 years diagnosed in the usa by a young internist...which was rare at the time to even find someone who believed in the illness..we had been sick with it for 10 years or more..you have the same problems we had in the beginning and even now..panic and anxiety come with CFS and or both illnessesFatigue that feels as if you are melting into the floorno good sleep restless legs at timesrashes, infectionsIBSblood pressure dropping after eating, feeling faint...orthostatic intolerance is what that is calledbrain fogshort term memory problemschest tightness and also short of breathdo you have pain and aching in the legs , arms and shoulder blade areasif so then you may have fibromyalgia also..they go together many timesboth illnesses.A book that helped me years ago was called Running on Empty ..you might google that book ...You need to find a rheumatologist that sees patients with CFIDS or CFS..only see someone who has a patient or many with it..They will know what to ask you and look for...keep a diary daily...carry it with you to each doctors appt..keep a copy of your office visit documentaion at home in a file for the future..keep a copy of your notes you take each time and your diary..at home too.Sheridragoflys


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## AoifeNnn

I was diagnosed with IBS a couple of years ago and found my health improved significantly after I made some lifestyle changes (exercise, diet etc). However, in recent weeks I have found myself constantly exhausted, headache-y, nauseous, anxious etc. I'm planning to make an appointment with a doctor soon to discuss this but I was wondering if anyone had any ideas what it could be/ if it could be CFS? Thanks!


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## DLTooley

I'm having exertional malaise that sounds an awful lot like CFS - the funny thing is that it is near as I can tell exactly the same as the malaise I feel when having an IBS diet trigger. Has anyone else experienced this?


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