cfs rant

[jann1033]

i am just so bummed out...went to dr today for diabetes check and due kind of odd way she acted last time i wanted to talk to her about my cfs...been doing not so good, lot of pain, worse fatigue than usual etc. well in a nice way she told me she feels basically cfs is depression...as she said "which came first" i am so totally bummed out about it. i like her personality but what is the sense of going to a dr who thinks it's the same as depression..then in the next breath she said she thinks a lot dxed with cfs have depression really...which i might agree with but i tried to explain i know about clinical depression and how different it is( daughter has it) than what i feel ie my daughter has always been able to walk, talk see etc and i can't at times, i can't lift my head to eat or chew a stinking bite of food due to the fatigue and daughter has never been anything like that....but no avail... i think i just feel so abandoned...i even said to her i have been trying to find a dr who has a concept what it is and tried to explain how i know it's not depression, ie in one of my " if i just push myself maybe i can do it" frenzies i dug about 1/2 a dozen small holes to put some 4 " pots of perennials in a flower bed and really thought i was going to die doing it, i kept telling myself only 3 more only 2 more the last one and then couldn't even put the tools away( and of course it poured rain on them) then was on the couch all day and part of the next. i mean i really try to do physical things and my body will not let me and then i can't even find a dr to help me. so she gave me cymbalta to "try" which i am hoping will at least help with the constant pain i have even though i know is isn't going to do squat for the cfs...i am just so tired of this and really do not feel i can take much more of this...i told her how imo my health problems will never be solved/managed till something happens to break this cycle i feel where one is reacting to the next and she said ...well the diabetes is almost under control...when she had just said not 5 mins before is really isn't under control so which is it ?...i am just so exasperated and have no where to turn to since i can not find a dr who takes this seriously...i am seriously thinking of having my husband go in next time i go to a dr since he at least knows it's real and not depression. not that depression isn't a horrible illness it's just not what i have.
and i can not find a dr on any cfs site that is near me but some flake that "cures" people from fatigue and calls it from cfs...his testimonies they never have cfs, just regular old garden variety tiredness which is like saying tums cures heart disease since it takes away acid indigestion...i give up

 

[Philagoofy]

I'm sorry you're feeling so lousy & tired. I don't know what CFS stands for but I know second hand how frustrating it is to have one health problem after another. My husband has diabetes, depression and several other physicial ailments, some which the doctors can't seem to figure out & help him with.

I think it may be a good idea to have your husband go with you to the doctor, may be able to ask questions or catch something you missed. I always go with my husband now (although he remembers more than me, even when he's just coming out of anesthesia after an operation).

Another doctor may be in order also. It can be difficult to find the right one but this one seems a bit contradictory & if you don't have faith & confidence in her than that's not good for you.

I'm sorry that I can't help but I suppose it may help a little just to get it out. I'm sorry too that your daughter suffers from depression. I wish you better luck with your doctor and treatment and most of all, better health and peace of mind.

Don't give up, tomorrow morning starts a bright new day. After a good night's sleep,which I hope you can get, you may still feel lousy but there always seems to be renewed hope in the morning. You'll get through this.

 

[KPeveler]

CFS is chronic fatigue syndrome

I have been suffering from CFS for years. Have you checked out the side www.butyoudontlooksick.com? It is a great site!

 

[Christine]

I feel for you.

There was a time that I thought I had CFS. I still think I *have* something but just probably not CFS. I get spells of horrible fatigue and I hate it. Many years ago, when having lots of tests done, I brought it up with my GP, who basically laughed and said it was a "made up" name for something and he felt that it didn't really exist. He wasn't denying that I was tired and something might be wrong, but he had a very bad attitude towards CFS. I think lots of people do--same with fibromyalgia.

Your best best is to search for a physician that is "on board" and believes in these illnesses.

 

[jann1033]

thanks to all...i tried to register on that you don't look sick site a few weeks back after lurking off and on for a few yrs and couldn't remember my password or user name...and didn't notice it was on the activation email... that brain fog just slips right up and smacks you when you least expect it. but i registered again, and after repeatedly trying to log in again saw the user name and password( i always use the same user name so i don't forget but by mistake added an extra n and 3...whoo boy....)

that stupid cymbalta knocked me for a loop and i have been in bed a lot today. i did see on a page about side effects they do use it for fibro pain so at least it isn't off the wall for that but it makes you tired just what i need... something to make me tired

but i think i am going to see about another dr. the one who originally dxed me just moved out to my area and i am going to see if i can go to him ( insurance) as he has diabetes as one of his specialties and at least had an open mind about CFS last i saw him 15+ yrs ago...

 

[disprincesspatty]

I would imagine that the symptoms you describe could be a million different things. Why are you so sure it is CFS? Did she suggest any other causes?

 

[KPeveler]

most of us who are sure it is CFS have been tested for everything else under the sun. (if i get one more mono test...)

Doctors say that CFS is "all in our head" no matter what the CDC, NIH, or anyone else says. They do not offer any other alternatives, because they do not believe that we have a medical condition.

now that i have been diagnosed with another condition (genetic), and CFS often goes with it, NOW they believe me. but if you are just tired, like i used to be, then no one offers any help.

 

[jann1033]

I would imagine that the symptoms you describe could be a million different things. Why are you so sure it is CFS? Did she suggest any other causes?

"when i first got sick i was tested for everything under the sun from cancer to MS to lupus to ra to depression to aids to serum sickness to allergies, you name it , if there is a test for it i've probably had it. cfs is a diagnosis of exclusion...there is a set of criteria you have to meet but they also have to test you to rule out anything else it could be since there is not a specific test for cfs. so after months of testing and you meet the criteria and nothing else has come up you have cfs..the problem is some drs have dxed things as cfs with out doing all the testing and the dx isn't accurate ... ie depression, someone is just tired from everyday life etc...i've seen this in particular with alternative health type providers, ie they dx people who they claim have it then "cure" them and push their "cure". there is a dr in my area that does that but if you closely read the history of his patients they never had cfs in the first place, most were just tired due to lack of sleep, a buy life etc...so then someone that really does have cfs is looked down on even more by the medical community due to that fact some people who shouldn't have been dxed with it say they have it and it perpetuates the "hysterical hypochondriac" notion

that is why it really kind of bugs me( that attitude) i have had all my old charts sent to these drs and they can 1) see how sick i was when i got sick, no matter what recurring symptoms i happen to have at that moment...bedridden for months, couldn't see, couldn't' walk due to balance/weakness/ leg dragging/not knowing where limbs were, fatigue to the point i couldn't eat talk, walk to the bathroom etc, confusion to the point i did not know where i lived...we are not talking about a few minor symptoms here, any idiot should be able to see something was desperately wrong that i went from a fully functioning "superwoman", working, raising a family and doing volunteer work 20 hrs a week to not able to get my butt off the bed in literally a few weeks time( i got bronchitis, was on meds for it and we went on a 2 weeks vacation, by the time we got back i could hardly walk due to pain, butterfly rash,etc and it all went downhill from there)..but they ignore all that ( and what ever symptom i have at the moment) for their preconceived opinions...i have actually had a neurologist tell me as i stumbled around his office and couldn't pass any of the neuro tests it was "all in my head" cause "nothing acts like that" ( later i found out it is exactly how ms "acts" btw from a friend who has ms and recognized my symptoms which led to my first mri) and a dr condescendingly wave me aside because"its all in my head", then totally panicing since i was literally swelling up like a balloon before her eyes (and had to take steroid shots and packs for weeks due to my immune system being so messed up..)while telling me to see an allergist but refusing to read what the allergist i had seen said..

and just wanted to add, now a lot of drs( including the one i just saw) lump any thing that resembles "tiredness" in with CFS...CFS is an actual illness, like cancer is an actual illness..it's not a symptom". for example, if you thyroid is messed up you might gain weight and be tired..but that tiredness or "fatigue" is not CFS., it's just fatigue. the problem is by doing that( lumping it all together) they have watered down the actual facts about cfs...ie up to 80%( from what my 1/2 working brain remembers, i have a problem with numbers but i think it's 80%,i know it is over 75%) of people with CFS never are able to go back to work but people with "fatigue" due to other things can still work so when they lump them together the % goes down... that is similar to saying any pain in your chest, ie indigestion, a pulled muscle are in the same catagory as having a massive heart attack and therefore 90% of people don't die from chest pain,,true but they still die from chest pain if its' a heart attack....
CFS fatigue is like no other fatigue..it isn't "tiredness" it's not having enough energy to be able to move or chew or talk... when i was at my worst i knew if there was a fire there was no way i could walk out of our house, you just do not have the energy your body needs to do anything but breath and have your heart/vital organs function minimally.

it is so crazy the way this illness has been so ostracized it has made otherwise logical medical professionals totally illogical...they ignore everything they see and thousand of medical studies because of the propaganda that has been put forth about cfs. it really imo is a crime and i wonder how much of an uproar there would be if aids or breast cancer or any more "popular" illness( by that i mean ones that have public support) had been treated that way. people have died from cfs ( usually it is attributed to something else like heart disease that is actually brought on by cfs but some MEs have actually attributed deaths directly to cfs) and you can't find a dr who even tries to treat it..

ok i'm done now...sorry for rant #2

the dr that originally dxed me 20 yrs ago does take my insurance so i am going to call his office and hopefully he is still at least as open minded about cfs as he was and i can see him

i didn't take the cymbalta last night and the pain is worse but at least i am functioning better so i'm not taking it...i have weird reactions to some meds( that is a family thing as so do my mother and daughter) and imo i'd rather have the pain than feeling like i'm going to toss my cookies and can't function

 

[Christine]

Hey, I understand how you feel about these meds! I have tried every SSRI and SNRI and all the others and I feel so bad on them that I cannot take them--even though I think they could help me in the long run. I think my "wiring" is just so sensitive that I can't handle it.

 

[jann1033]

Hey, I understand how you feel about these meds! I have tried every SSRI and SNRI and all the others and I feel so bad on them that I cannot take them--even though I think they could help me in the long run. I think my "wiring" is just so sensitive that I can't handle it.

it is odd how that happens sometimes..my mom has RA and my daughter has a lot of physical problems( mostly skeletal and disk ,they thought she could have ms but it ended up being her disks) and it's weird how meds affect us like they technically are not supposed to...i sometimes wonder if something else is off if it affects meds weirdly to

 

[arminnie]

cfs is a diagnosis of exclusion...there is a set of criteria you have to meet but they also have to test you to rule out anything else it could be since there is not a specific test for cfs. so after months of testing and you meet the criteria and nothing else has come up you have cfs
......
CFS fatigue is like no other fatigue..it isn't "tiredness" it's not having enough energy to be able to move or chew or talk... when i was at my worst i knew if there was a fire there was no way i could walk out of our house, you just do not have the energy your body needs to do anything but breath and have your heart/vital organs function minimally.

I was diagnosed with CFS 7 years ago after almost a decade of tests, surgeries (sleep apnea, GERD, sinus, gallbladder and more) plus consults with allergist,pulmonary, cardiac, gastro, endocrine doctors. No one hoped more than me that the next "treatment" would finally make me feel better.

I have an EXCELLENT doctor. She is the one who brought up CFS not me. I agree with you about the CFS fatigue being like no other fatigue.

I really hate to tell you this, but there really is no cure or medical treatment for CFS. Having the best doctor in the world cannot make it go away.

It certainly helps to have a sympathetic doctor, but really there is nothing that a doctor has to offer to combat the fatigue.

The only thing that helps me at all is to get as much sleep as possible and to avoid over tiring myself - any physical labor is out of the question. A normal person can bounce back from overexertion in a day or two. It may take a person with CFS months to recover.

I got an ECV at WDW for the first time last fall. It really made a lot of difference. One time I went to WDW for 2 solid weeks - I only got out of my room THREE times in two weeks because I was so fatigued. I am still learning never to push myself.

 

[jann1033]

i know they can't cure it but i am hoping for them to know enough not to make it worse and a dr who doesn't believe it exists, in my experience after going to cfs gnorant drs for almost 20 yrs, has a tendency to discount any symptom they can not test for. there are treatments for some things that cfs has brought about, that even though they don't cure the cfs can help threat that problem. but if they think you are overreacting, ie lazy-crazy they don't.

"ie last dr gave me cymbalta ( might be repeating my self, probably am) and "like the antidepressant they gave me 20 yrs ago that i took for a few days, it made me worse. i am guessing if some articles i have seen are right, since it's not a lack of serotonin with cfs,as it is with depression, and cymbalta is serotonin and i think neurepinephrine(?) giving you more doesn't do you any good and might make you worse( saw one that basically talked about serotonin poisoning even though they called it something different.)..so now a week later. i am dragging myself out of the hole i got in when i took the cymbalta( dug about 6 ft deeper by going to the zoo with granddaughter when i knew i was pushing it to start,just get so sick of disappointing constantly,and then the tram wasn't running and it was 80 degrees so i actually walked some= not good.) there are plenty of pain meds they can give but she was fixated on one i really shouldn't have taken . if she listened to me about what happened the last time i took seretonin and accepted cfs as a reality, she would have given me something else.

ot but it 's funny now but by the end of a couple hrs at the zoo i was so tired i was getting really cranky and fuming this family did not notice how tired i was and move off the bench so i could sit down which i know is irrational but they should be able to read my mind shouldn't they

i got an appointment for next month with dr that originally dxed me with cfs and is also a diabetes specialist...i wonder if i cant' control the blood sugar due to adrenal problems since when the test they do for diabetes management, my score is much better, almost where it should be but i am still having wildly fluctuating highs and lows( like 300, hr later 70 with no discernible reason). anyway i hope he still is open minded about cfs.

the other thing with not having a cfs knowledgable dr is kiss ever getting ssi goodbye. in 2005 i was in the hospital for a week due to chronic illness number 3 and the finance people put me in contact with ssi and Medicaid people .I haven't been able to work since 1988 and filed once around 1989-90 but they claimed it was epstein barr virus and my titers were "lower"( back when SSI claimed CFS was based on epstein barr virus and they neglected to notice I had only had the test one time & my titers were never all that high to start with)but i got denied ( again) this past winter for ssi since my "records are not up to date pertaining to CFS and while at one time the records show a serious illness( yeah being bedridden, not able to walk or talk looks a tad serious but somehow they didn't notice that in '89) there is no proof you still have it" since none of the drs in the last 15+ yrs have ever mentioned cfs to be related to anything i went to see them for since they don't believe it exists.

 

[Fan2CSkr]

I feel for you! I have absolutely zero tolerance for any Doctor that uses the phrase, "its all in your head."

Have a look at this site and read the useful website link - lots of terrific info to gain as much knowledge as you possibly can. After all its the sufferer that is ultimately responsible for getting the help we need and knowing where to find it.
http://brain.hastypastry.net/forums/forumdisplay.php?f=116

Often the best physician recommendations for your area come from local support groups where individuals share their own experiences. The CFIDS Association will send you a list of support groups and contacts in your state if you will e-mail your name and complete mailing address to SupportGroups@cfids.org

A collection of listings, of doctors who have been recommended by and for CFS/CFIDS/FM patients.

http://www.co-cure.org/Good-Doc.htm

I wish you the best and really hope you locate a doctor that can help you. It sounds like you have had way too much to deal with already.

 

[jann1033]

I feel for you! I have absolutely zero tolerance for any Doctor that uses the phrase, "its all in your head."

Have a look at this site and read the useful website link - lots of terrific info to gain as much knowledge as you possibly can. After all its the sufferer that is ultimately responsible for getting the help we need and knowing where to find it.
http://brain.hastypastry.net/forums/forumdisplay.php?f=116

Often the best physician recommendations for your area come from local support groups where individuals share their own experiences. The CFIDS Association will send you a list of support groups and contacts in your state if you will e-mail your name and complete mailing address to SupportGroups@cfids.org

A collection of listings, of doctors who have been recommended by and for CFS/CFIDS/FM patients.

http://www.co-cure.org/Good-Doc.htm

I wish you the best and really hope you locate a doctor that can help you. It sounds like you have had way too much to deal with already.

thanks for the email advice. there aren't any good drs in my area on any lists i've ever checked but maybe they know of one that isn't posted.

 

[geetey]

Hi Jann,
Just reading your post and wanted to give you a and a while you are dealing with this. I am not very familiar with cfs but, as an MS patient - now with these dumb liver issues , a lot of what you are writing about rings true for me too.

I hope your new doc provides some good support for you! Maybe he can help you with the 'yellow' stuff too.

 

[jann1033]

Hi Jann,
Just reading your post and wanted to give you a and a while you are dealing with this. I am not very familiar with cfs but, as an MS patient - now with these dumb liver issues , a lot of what you are writing about rings true for me too.

I hope your new doc provides some good support for you! Maybe he can help you with the 'yellow' stuff too.

thanks, last dr was sure i had ms instead of since i have a number of neuro stuff that starts usually a month after i get a relapse ( fatigue type stuff comes first,then the neuro stuff starts later)but imo that hasn't changed and they ruled it out "for the present time" when i first got sick in 1988 so i am just thinking it's their lack of understanding of cfs.

btw,the "yellow" is better ( it comes and goes, has for a while but well i've been somewhat hesitant to bring it up just to have them think i am totally nuts) so at least i feel like i can approach it when i go to the dr and not worry for a month

 

[Ariel07]

Oh jann...I can sooo relate!! I actually have never visited this area of the Dis boards, but I am so glad that I have.

I know the frustrations first hand. I am currently dealing with a bad bout of CFS - since January I have been homebound and some days cannot even get out of bed. I have been unemployed for four years now, but I had problems way before that. I have found an on-line support group that has been very helpful for me -ww.immunesupport.com. You wil find a lot of information and a lot of people going through the exact same thing as you and experiencing the same frustrations!! This is a REAL illness that many doctors just don't get. I now work with a naturopath, that hopefully will get me on a road to recovery or at least one that is "liveable".

I actually keep telling myself that when I feel better, I am going to Disney World - I have needed something to look forward to, as this can get very depressing. But the months keep going by and I still cannot plan when I will go. I mean I have to have some energy!! As it is now, I am exhausted if I should even venture out for two hours.

I know someone on here mentioned that they too have it and did travel to Disney with it (sorry, I forgot whom?). They also mentioned something that they used while there that helped them - what would that be?? I need all the advice possible, or else I'll be in the hotel the entire time. Well...not so bad if it is somewhere nice!!

Good luck to you

 

[arminnie]

I know someone on here mentioned that they too have it and did travel to Disney with it (sorry, I forgot whom?). They also mentioned something that they used while there that helped them - what would that be?? I need all the advice possible, or else I'll be in the hotel the entire time.

I have CFS - official diagnosis in 2001 after years of testing, surgeries, etc. I am at WDW right now!

I got here yesterday but did not try to go to the parks today. I did go to Downtown Disney.

I rented an ECV last September when I was at WDW and that helped SO MUCH. What has helped me more than anything the past few years is to not over extend myself. If I overdo I get into a deficit that literally will take months to overcome.

I know first hand about being unable to have the energy to take a shower. It becomes an ordeal just to brush your teeth. You take care of basic hygiene just because you have to, but can be very difficult.

Someone that I have known for about 6 years was shocked the other day to hear that I have CFS. She said "You are on the go more than anyone I know." She does not know about the days and weeks where it takes every ounce of energy just to get dressed as I don't talk about those days.

 

[Ariel07]

I have CFS - official diagnosis in 2001 after years of testing, surgeries, etc. I am at WDW right now!

I got here yesterday but did not try to go to the parks today. I did go to Downtown Disney.

I rented an ECV last September when I was at WDW and that helped SO MUCH. What has helped me more than anything the past few years is to not over extend myself. If I overdo I get into a deficit that literally will take months to overcome.

I know first hand about being unable to have the energy to take a shower. It becomes an ordeal just to brush your teeth. You take care of basic hygiene just because you have to, but can be very difficult.

Someone that I have known for about 6 years was shocked the other day to hear that I have CFS. She said "You are on the go more than anyone I know." She does not know about the days and weeks where it takes every ounce of energy just to get dressed as I don't talk about those days.

Thanks so much for the reply.

So you are at WDW now, huh? I am telling you...I want to go so badly, but I am at bad place right now, so I keep hoping that something will turn around soon. I am now shooting for December. Doesn't the heat bother you? I figured if I was able to actually go this summer, the heat would do me in for sure. And mind you...I live in Florida, so I am used to it - but just can't handle it anymore. And now what is the ECV - just one of those vehicles that you drive around (like a scooter)? Probably a good idea. What do they charge for that?

And I can't believe you mentioned the showering ordeal. Forget it...if I take a shower now, that's it for the day! But don't worry people - I am only staying in anyway.

Maybe we can chat more after your fun at WDW!

BTW...LOVE the pix of your cockers - they are so cute!! I have two also, plus a lab mix. Are they with you or did they stay behind??

Enjoy your trip!

 

[jann1033]

in 2004 we went to disney for 9 days and were at vero beach for 5 before that..i rested a lot at vero, when we got to wdw, it was no place close to commando touring but when i got tired we went back or spent a lot of time on benches( sometimes it seems when i get to go somewhere i move from bench to bench to bench but it's better than the alternative)
the first 10 yrs i had cfs it was cyclic, now it's really not but i do try for vacations in the fall since hot or cold is harder to take for me. and i spend a lot of time resting post and pre trips . they are nothing like our old trips but like everything else i've adapted.
for the past week i am doing good ( well good for me) so i can't complain. i never even try to shower unless i'm either going somewhere or every few days to scrape the goo off but that is my normal.

supposed to see my new/old dr tomorrow but that might be a worthless trip as i just got a letter telling me i am being dropped from medicaid( well not dropped but a 800+ a month spend down so as good as dropped) they can't figure out why since my income hasn't improved or anything and my case worker just quit but if that is true and it is not a mistake i am sunk cause no way i can afford my meds and/or drs. then it will be back to no health care and now with my other chronic problems getting worse i am sunk for sure.

i have to say the best thing i have ever done with cfs is learned to pace myself. if i'm tired i don't do it...my house looks nothing like it used to , i don't do nearly what i used to even when i first got sick but in general i feel less" fluish/nausea/sore throat" sick than i used to so have mostly just the neuro/fatigue/fog stuff to deal with ...every little bit of less symptoms helps imo. and flare ups while i still initially panic thinking i'll never even get back to my" best of the worst", i always improve some so they are not quite so scary.