Your pain or your fatigue?

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Leghorn T. Foghorn
New Member


Date Joined Apr 2004
Total Posts : 1
   Posted 4/28/2004 11:57 AM (GMT -7)   
__Hi, I'm new to this board but not to the DD (CFS since 1987, FM since 1994).
__Last year I had a remission that was so good I thought I was finally through with CFS. Alas, enervating fatigue and cognitive symptoms ("fognition"?) crept back and have so far refused to leave.
__There was a lot going on last year, but one significant difference was that I was in a lot of pain in my lower back, diagnosed by MRI as facet joint degeneration. I said at the time that I'd rather have pain than fatigue, because there is lots that can be done about pain but little that reliably helps fatigue.
__So, high pain, low fatigue--for six or seven months--followed by low pain, high fatigue. I wonder if anyone here has had a similar experience.

Leghorn T. Foghorn

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/30/2004 9:27 PM (GMT -7)   
Hi Foghorn Leghorn,
Welcome to HealingWell and the CFS message board! I'm very glad to meet you.

I have both CFS and FMS, as well as chronic pain, so I do have a similar experience. I don't think I would agree that it would be better to have pain than fatigue, because pain can be treated better than fatigue. Because the truth is, pain cannot always be controlled. I couldn't quote you any statistics on how often pain can't be controlled. But I have a lifetime of partially (not completely) uncontrollable pain to look forward to, and I talk to several new people per week, who are in similar and worse situations, almost one a day, on average. Personally, I would NEVER wish for pain over fatigue! But when you get right down to it, no serious illness is any more or less desirable than the next.

I wonder if having more pain for several months, just kind of kept you pumped up all the time? Kind of tense and energized? Well that's how pain affects me, anyway.

Well, anyway, thanks for visiting us here, and I hope you'll stop by often. Take care.
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/20/2004 5:20 PM (GMT -7)   
Ah say Ah say Ah say !
Sorry, couldn't resist stealing your lines there... tongue LOL
Back to the subject.
In the past I've had bouts of very severe fatigue - taking 24 hours to recover from walking 500 yards, my energy disappearing as fast as the noise from a radio with the plug pulled out ( 2-3 seconds ), sleep paralysis etc - and at these times I had a noticeable imperviousness to pain. In fact, I found that at such times, an injury could feel "ticklish". I put this down to the fact that a neurotransmitter called serotonin is released at the site of wounds, and my body was so starved of it that it acted as a (temporary) stimulant and very powerful painkiller. (But its' efficiency rapidly diminished - banging my thumb repeatedly with a hammer still turned the air blue.)
Nowadays my fatigue is more chronic than acute - general lack of oomph, particularly at midday - virtually never a "fit" day, but I have lots more aches and pains than I ever used to. My back and knee joints in particular seem to flare up for absolutely no reason, and I can be quite sure it's not anything I'm doing because I'm used to doing safe posture training for other people and so I'm always aware of that.
So...not a clear pattern, but as a rough guide maybe, pain in me is inversely proportional to fatigue.
So far. Long may it continue.
I've actually spent a lot of time feeling guilty because other people are out working hard for a living and paying taxes to pay for me to stay home and just sleep endlessly, which compared to cancer, MS, etc seemed sinfully easy. Quite often the hardest thing was being called lazy when I knew I could do darn near any job I set my mind to, if only my body would let me.
Know what you mean about fognition, my memory is atrocious. (Apart from words for some reason.) Until I got a computer, I was utterly disorganised - now I just obviously hate housework ! tongue LOL

chilln
New Member


Date Joined Oct 2004
Total Posts : 5
   Posted 10/22/2004 10:16 PM (GMT -7)   
For me, fatigue is much more debilitating than pain.  Most of my pain can be either stopped or lessened with medication. As far as I know there is no medicine for the fatigue. Even when my pain is severe and cannot be completely eliminated, at least I am forced to concentrate on the pain and trying to get rid of it instead of on what I should be doing. With the fatigue, I try to force myself to get up and do something, but my body won't move. Then guilt sets in over all the work that is left undone because I'm just too tired.

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/23/2004 12:16 PM (GMT -7)   
I know what you mean about guilt, I've really got that old Scottish Calvinist work ethic built into me. And of course the more time you are unwell, the more things you have to run about trying to do when you have some energy...until, in my case anyway, you drop.
But nowadays I think of it as the physiological equivalent of two broken legs. You wouldn't expect someone with that to do hoovering, would you ?!
The odd thing is, it's usually the people closest to you who are most likely to think it's just voluntary laziness - as if you've suddenly decided not to bother with life, and so it is your fault !

chilln
New Member


Date Joined Oct 2004
Total Posts : 5
   Posted 10/23/2004 1:49 PM (GMT -7)   
Yeah, exactly! I happen to remember quite well how efficient and productive I was once. But nobody else seems to remember. Tell me, if you are a "neat-nick" who is very organized most of your life, and suddenly you are a slob AND you are constantly beating yourself up about it, what makes people think you have become this way by choice?

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/25/2004 6:32 AM (GMT -7)   
It doesn't make much sense, does it chilln? I don't know if a global statement can be made about it. But I know in the family in which I grew up, being ill was something to be embarrased about, outside the family. Oh we were always taken care of, but actually admitting to being sick outside the house--well it was considered complaining, for one, and also an embarrasment for the family. Even if one was ill, complaining was forbidden. Plus, if a Dr couldn't diagnose or treat the illness, then one really wasn't sick. And if one wasn't really sick, then they are just being lazy, and no amount of laziness was acceptable.

I don't know. I guess it's just outdated belief systems. Within my own family, I have a tried to be an advocate for change in the way ill family members are treated. Don't they always say if you want to change the world, start at home? Anyway, that's just my perspective.

Also I don't want to forget--Welcome to HealingWell and the CFS message board, chilln!

Btw, snohare, I have to laugh at "hoovering"! LOL! I think this could be one of those interesting language customs that we find "across the pond" from each other. I'm assuming that hoovering mean cleaning the floor with a vacuum cleaner?
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


chilln
New Member


Date Joined Oct 2004
Total Posts : 5
   Posted 10/25/2004 8:04 AM (GMT -7)   

Well it's nice to see that this board it active. I've been looking at different ones, and some haven't been posted in for months.

I know this forum isn't just for complaining, (although I'm certain to do my share of that,) so are there any on-going projects by which we help each other to be productive in our own capacity?

I've tried to join in on housekeeping type forums, but they are not for CFS people, and they are WAY above my abilities. When reading those posts, I feel hopeless since most of them are holding full-time jobs, raising kids, AND getting organized!

They "talk" about baby steps, but they must be taking about 100 baby steps at a time!  LOL!

Thanks for the welcome!

 


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/25/2004 8:20 PM (GMT -7)   

Ooh, let's see now chilln, are you any good at dusting ? (I've already "hoovered" beg pardon vacuumed, three times this year, yeah so you're safe there - wouldn't want to wear the carpet out !)  Do you know of any good tips on how to overcome the "I had it in my hand five minutes ago" syndrome ?

Don't suggest handcuffs, I lose the key.... (My Dad was a bobbie. tongue There's another "pond-er point" for you Brynn ! LOL )

Sadly, Attention Deficit Disorder runs in my family, and I'm the lucky chap who gets to pass on the torch, so I can't answer your question about what happens to ex-neat-nicks. Not to mention guilty slobs. Oh, if only !! eyes  But I can tell you how not to end up with every flat surface cluttered with bric-a-brac...can't do it myself, but I can advise you...

As far as housekeeping goes, I'll have to see if I can't borrow a book of my sister's that she once loaned me. It was written by a student who became an office cleaner in his spare time to pay for his beer, found he was a natural time-and-motion man, and became such a huge success at cleaning that he made millions with his cleaning company. (Wiped the floor with the competition I expect - I'll bet there was a fair old dust-up.)

Anyway, his book was full of clever little tips - like, putting a good thick door mat just inside your door cuts down on hoovering (that d**n word again, we're jinxed now) because it traps all the dirt that comes in from outdoors; and, if cleaning, put the stuffie on, then go read a newspaper - let Father Time do the work.

But are you serious - are there really such rare and exotic creatures as housekeeping forums ?  redface Wow ! How do I get to one ? (There's a Christmas card from my landlord in it for you if you tell. He's afraid my fluff bunnies are not just breeding, but mutating into monsters...)


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/26/2004 8:04 AM (GMT -7)   
LOL!  Oh, well you don't have to stop using these words, or avoid using them.  I just ask so that I know what you're trying to say about something.  I'm actually looking forward to learning something new every now and then.  Although I already know what "bobbie" means, "the stuffie" has me stumped.  Can't even offer a guess about it!  LOL!
 
Well this board hasn't been very active either, chilln, until just now.  I think snohare pointed out (in another thread) that there are way many more times that messages are read, than the number of replies posted.  I don't really understand why, but some boards are very active, with several new topic threads, as well as replies to existing threads, posted daily; while others maybe get just a few new posts of any kind per week, or per month in some cases.  Part of the problem may be for lack of moderators.  All HW moderators are volunteers, and new ones have not always been solicited by the administration. But that can't be the whole story, because there are a few boards which remain spontaeously active, without the help of a moderator.  Plus there are boards like this one, which despite having a moderator, still are not very active.  So it's hard to say for sure what the problem is.  By the way, I think currently there are messages from the HW administrator, on some of the boards which don't have moderators, inviting volunteers.  So if anyone is interested in volunteering as a moderator, please feel free to follow the instructions given in those messages.
 
I'm not sure what you mean by "... so are there any on-going projects by which we help each other to be productive in our own capacity?"  And I think it's the word "project" which is confusing me.  Any member who wants to, can start their own topic thread, about anything related to CFS (on this board).  Just click "New Topic", type your message and ask for comments, or support, or whatever.  Or are you talking about support groups, where you would go in-person, to give and receive support?  I'm just not sure what you're asking, so if you can clear that up for me, I'll be more than glad to try to answer (again)!
 
Are there really message boards about housekeeping?  Yikes!  I don't think I would ever want to participate in something like that, healthy or not.  No offense, that's just me...but yikes!  LOL!
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


chilln
New Member


Date Joined Oct 2004
Total Posts : 5
   Posted 10/27/2004 11:15 AM (GMT -7)   
Well, I didn't see snohare's original post about "hoovering," but if I had, I probably would have considered it a typo, and thought that it referred to "hovering," aka "lurking," as in hanging around, reading the posts, but not posting anything yourself.
But then I tend to be a little "out there" sometimes. Seems when my mind isn't "hovering" (in space) it gets caught "hoovering" (in a vacuume.) Maybe that's why I hate vacuuming.

Sorry, I too have ADD, so I don't think I can help you with the IHIIMHFMA syndrome.
So... how DOES one keep flat surfaces clear?
Actually, I know how, (yes, there are housekeeping forums, and you can learn lots of "decluttering" ideas) but KNOWING isn't my prob! It's having the strength to DO what I know....

What's a "stuffie?"

Okay, don't tell your landlord, but here our dustbunnies have always been monsters. If you want to check out those forums, they are flylady.com and getorganizednow.com
But I'm warning you, they were started by professionals, and most of there "routines and assignments" are way past my abilities.

Brynn, on those other forums I mentioned, they have things they do as a group, such as decluttering your house, working on a room per month, tossing out junk, etc. But they do so much at once, that I can't even begin to keep up. They are mostly people who don't have chronic health problems.

So I just wondered if any of you were doing anything together, more on my level. Perhaps setting a goal to do ONE thing. Such as cleaning the frig, on a certain day... or getting the whole house "hoovered" in a week's time?

I'm not trying to win a clean house award, I just want to get from my bed to my bath without tripping on last week's laundry!

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/1/2004 3:37 PM (GMT -7)   

Oh, that's interesting...if I understand what you mean!  Is it something like--someone will say, OK let's all clean out and organize our pantries this week--and then members will support and encourage each other throughout the week, as their individual work progresses?  Or, as you mentioned the sites are run by professionals, does the moderator kind of give instructions--like ok, on Monday, go through and throw out everything that's past the expiration date or gone bad--on Tuesday, go through and move everything off one shelf, wipe down the shelf and replace everything--....  Something like that?

It's interesting, but we've never done anything like that.  I suppose we could, if there was enough interest.  Unfortunately, this board may not be busy enough to support it.  The Fibromyalgia board is busy enough to support something like that, but I'm not sure if anyone would be interested.  I guess it wouldn't hurt to post a message to that affect, just to find out how much interest there might be.  So please feel free to introduce yourself on the FMS board, and just ask if anyone is interested.  I post on that board a lot, as a regular member, I don't moderate there.  So I'll see you there, if you decide to try it.

Take care.


Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


joci
Regular Member


Date Joined Dec 2005
Total Posts : 93
   Posted 12/22/2005 11:57 PM (GMT -7)   
PROVIGIL HELPS SO MUCH WITH FATIGUE ALSO WITH MEMORY AND CONCENTRATION!!!! I GOT MY LIFE BACH FROM THIS MED. IF U HAVE IBS-D IT WILL AGRIVATE IT CUZ THERES MAGNESIUM IN IT BUT U CAN TAKE WATEVA DOSE U CAN TOLLERATE!!
love to hear from u.
                           
                          joci
 
28 yr old from mass. i got fibro, migraines, anxiety scholiosis and ibs-d.i also have difficulties with tollerating meds! and having major chronic fatigue also acid reflex, astma, allergies and insomnia-at night. im tired all day.

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