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Old 04-24-2005, 07:31 PM   #1
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pajamaqueen HB User
CFS questions, questions and more questions

New here, and like many of you, tired/exhausted/fatigued (take your pick.) For the past year and a half (at least) I've been fatigued beyond what I know is normal for a 26-year-old. I have to really pace myself with everything from social activities to housework. I had mono for a second time in my life two years ago in the fall; I'm not sure if I just never bounced back after that or it started later--it's all a little fuzzy. But I did finally go to a doctor starting this past August and have been a guinea pig for blood work and other tests since then. Still no diagnoses, although at the rate other possibilities being eliminated, along with the fact that I can say yes to too many of the diagnostic criteria, it's looking more and more like CFS.

I know you all have done this hundreds of times already, but I was hoping that if I listed my symptoms you could give me some feedback. Unfortunately, I have not had the good sense to actually ask for a copy or write down the results of all of the bloodwork I've had done, but I'll be asking my doctor for the numbers next time I see her (in a week or so I'm sure...)

- tire easily (aka low stamina?)
- often wake up tired, even though I often sleep in and take naps almost every day
- extended recovery periods after overdoing it (post-exertional malaise?)
- more frequent headaches--hard to say if they're any different than ones I've had in the past because I used to get headaches so rarely
- minor pain in various places in arms, legs, and... everywhere I guess
- have random muscle twitches
- frequently have sore lymph nodes in neck and armpits
- sometimes feel weak and even a little lightheaded
- both long term and short term memory seem to be short circuiting
- often feel fuzzy brained

Things I'm not sure are related:
- sensitive to extreme heat/cold (lucky me to be living in hot and humid Texas, no?)
- cold hands/feet
- back pain -- not sure is from pregnancy 3 years ago, 9 pound babies that kick and don't stop can't be good for your back.
- have had mono twice (and I know that isn't supposed to be possible, but it was confirmed as mono both times so I guess I'm just lucky that way.)
- in past 6 months have had several urinary tract infections
- had normal B12 levels in one test, but in more recent bloodwork doc said it was low (not sure if low means lower than before our out of the normal range)

I also had an incident a few weeks ago in which I was extremely itchy all over my body. It was weird, and after a couple of days (and a LOT of Benedryl--like I really wanted to be MORE sleepy!) it gradually went away.


A few specific questions:


1. CFIDS (Chronic Fatigue Immune Dysfunction Disorder) and CFS (Chronic Fatigue Syndrome) -- are they the same thing or slightly different? From what I can piece together they are one and the same, so why the different names?

2. The "flu like symptoms" -- for most CFS sufferers, are those pretty much a constant? Because, although I do get frequent headaches, sore lymph notes, etc., I don't necessarily get them all of the time or all together. Some days I'm just plain exhausted and mentally dull all day. Other days I notice more aches and pains. Just wondering how flu-like people with CFS feel, and if those symptoms wax and wane as well.

3. How do you all define "brain fog"?


Well, I had more questions but I didn't get them down fast enough so flit-flit, away they went. Thanks in advance for any input.

Last edited by moderator2; 04-27-2005 at 06:38 AM. Reason: not allowed to post websites with message boards/forums

 
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Old 04-24-2005, 09:01 PM   #2
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Join Date: Jul 2004
Posts: 544
CFD 333 HB User
Re: CFS questions, questions and more questions

Hello Pajamaqueen, sorry to here that you aren't feeling so well. I can totally relate to being so young and so sick all the time...I'm only 27 myself and have been suffering for almost 2 years already. To answer your questions:

1. CFS and CFIDS are one and the same illness. CFIDS is a name used by certain organizations and physicians because they feel that Chronic Fatigue Syndrome doesn't properly describe the illness. Since the most recent research points to an immune system abnormality, CFIDS seems to be more appropriate but the two terms are interchangeable.

2. Flu-like symptoms are a very common complaint amongst CFS suffers. In fact, most people will be able to tell you that their illness had a very definite starting point that began with flu symptoms that never quite went away. The flu symptoms tend to wax and wane quite a bit as well...sometimes they flare up quite severely leaving you bedridden for a couple of days and other times they back off for a little while and you almost seem to feel normal. This phenomenon tends to be related to how much emotional or physical stress you are going through at the time. The term "post-exertional malaise" relates to the fact that even the slightest stressors tend to leave you feeling more ill than usual with flu-like symptoms for a few days or weeks. For this reason, many of us need to be really careful in avoiding or limiting stress and physical activity as not to cause an exacerbation of these symptoms.

3. Brain fog usually refers to a reduction of cognitive abilities. Simply put, when someone describes being "brain fogged" it involves forgetfulness, spaciness, and feelings of confusion and inability to focus. The mind literally feels "fogged over". A similar experience would be having a hang-over after drinking excessively the night before.

I hope this information helps you. I and many others here have spent a lot of time researching this illness so if you have any questions please feel free to ask. If you do a search on these boards under my name, you will come across several posts where I discuss some of the latest research in CFS.

Last edited by CFD 333; 04-24-2005 at 09:05 PM.

 
Old 04-25-2005, 09:08 AM   #3
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Join Date: Dec 2004
Posts: 263
kiya HB User
Re: CFS questions, questions and more questions

Hi pajamaqueen

I can't answer the first couple of questions because lamotta already answered the first one very well and I haven't experienced any flu-like symptoms with my CFS.

Brain fog I would describe as the kind of feeling you get when you first wake up - slightly disorientated and not fully "with it" - except instead of disappearing, it lasts all day. That's my experience of it anyway. I did have some problems with concentrating, but after I stopped stressing about forgetting things, my concentration/memory improved a lot!!!

You were very unlucky to get mono twice. I had it once and it was more than enough! Good luck with getting an accurate diagnosis.

kiya

 
Old 04-25-2005, 04:34 PM   #4
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Join Date: Feb 2005
Posts: 433
terrienne HB User
Re: CFS questions, questions and more questions

Hi !

I promise, I do know how you feel. I have CFS and more......,

One thing for sure, ' there's a LOT of other problems that go along with CFS. '

Rather than getting into my case, you might want to check out the
' infectious disease ', message board !

Also, you might find some helpful information on ' Sjogren's syndrome ' !

I will check back with you later on.........,

I hope you feel better, and I wish you well,

Gee Gee

Can't get enough....ZZZZZZZZZZZZZZ'S......,

 
Old 06-21-2005, 10:39 PM   #5
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Join Date: Jun 2005
Location: Auckland, New Zealand
Posts: 2
Gilliflower HB User
Smile Re: CFS questions, questions and more questions

After having CFS for 12 yrs., can only say that I've had all your symptoms
and still do have. When my brain is "fuzzy" I mean that I can't think clearly
and take a long time to work things out in my head. Feel like cotton wool
up there. I still experience this, but am managing my CFS now, so there is
hope. Coping with life, and enjoying it as much as possible. Just have to
learn to pace myself. No overdoing anything, rest when necessary.
Gilliflower

 
Old 07-15-2005, 06:27 PM   #6
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zuzu2 HB User
Re: CFS questions, questions and more questions

"The flu symptoms tend to wax and wane quite a bit as well...sometimes they flare up quite severely leaving you bedridden for a couple of days and other times they back off for a little while and you almost seem to feel normal."

with the exception of this 1 sentence, its a good post. i know alot of people including myself who, once they became ill never had a period where they felt anything remotely close to "normal" again. also there are 2 distinct onsets, sudden onset (which was mine) and chronic onset. most of the CFIDS ppl have the sudden onset type.

 
Old 07-15-2005, 07:23 PM   #7
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Join Date: Jul 2004
Posts: 544
CFD 333 HB User
Re: CFS questions, questions and more questions

Quote:
Originally Posted by zuzu2
"The flu symptoms tend to wax and wane quite a bit as well...sometimes they flare up quite severely leaving you bedridden for a couple of days and other times they back off for a little while and you almost seem to feel normal."

with the exception of this 1 sentence, its a good post. i know alot of people including myself who, once they became ill never had a period where they felt anything remotely close to "normal" again. also there are 2 distinct onsets, sudden onset (which was mine) and chronic onset. most of the CFIDS ppl have the sudden onset type.
This is why I included the words "most" and "sometimes" when referring to the onset (sudden or gradual) and flare-ups, respectively. These are very important distinctions to be made here because no two people experience CFS exactly the same. "Normal" is relative term...what is meant exactly is that there are occasions where many people, myself included, have experienced a temporary sense of "normalcy", if you will. Its almost as if you forget you even have the disease even though, deep down, the disease state remains, but you just don't FEEL sick. Some of the more fortunate of us get to experience this from time to time and call them "good days". It is important, however, for those that experience this not to overdo it or try to play catch-up with chores or work they are falling behind on which can lead to post-exertional malaise. Post-exertional malaise is usually a very temporary worsening of symptoms due to overexertion or stress that usually displays itself within 24 to 48 hours after the event has taken place and lasts for at least 24 hours.

Last edited by CFD 333; 07-15-2005 at 07:29 PM.

 
Old 07-16-2005, 05:27 AM   #8
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Join Date: Jul 2005
Location: Toronto Can
Posts: 13
crannie HB User
Re: CFS questions, questions and more questions

Quote:
Originally Posted by pajamaqueen
- tire easily (aka low stamina?)
- often wake up tired, even though I often sleep in and take naps almost every day
- extended recovery periods after overdoing it (post-exertional malaise?)
- more frequent headaches--hard to say if they're any different than ones I've had in the past because I used to get headaches so rarely
- minor pain in various places in arms, legs, and... everywhere I guess
- have random muscle twitches
- frequently have sore lymph nodes in neck and armpits
- sometimes feel weak and even a little lightheaded
- both long term and short term memory seem to be short circuiting
- often feel fuzzy brained

Things I'm not sure are related:
- sensitive to extreme heat/cold (lucky me to be living in hot and humid Texas, no?)
- cold hands/feet
- back pain -- not sure is from pregnancy 3 years ago, 9 pound babies that kick and don't stop can't be good for your back.
- have had mono twice (and I know that isn't supposed to be possible, but it was confirmed as mono both times so I guess I'm just lucky that way.)
- in past 6 months have had several urinary tract infections
- had normal B12 levels in one test, but in more recent bloodwork doc said it was low (not sure if low means lower than before our out of the normal range)


3. How do you all define "brain fog"? .
Oh my god, are you my daughter.. everything you mentioned here except for the pregnancy fits her and she is only 18. She also has low iron and recently had an operation for Kienbocks disease.

I see the frustration in her that you must all share.. I hope you get better as it must be hard to deal with a young child when you are not feeling your best.

Crannie

 
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