![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 12 to 36 of 36. Go back in thread:
Posted by dazedandconfused on August 20, 2004, at 13:41:42
In reply to Re: Ilene - how was your CFS diagnosed? » dazedandconfused, posted by Larry Hoover on August 20, 2004, at 12:20:32
> > Ilene,
> > If you don't mind my asking. The reason is I have been wallowing around for the past four years not making much progress. Suffered episode of major depression four years ago which lifted within the year. However, still have not returned to my initial level of functioning. Major symptoms are debilitating fatigue, hypersomnia, daytime sleepiness. Kept blaming it on depression and/or meds. But the bottom line is I don't feel sad....just so tired. My therapist agrees I don't have major depression but still have dysthmia. Have tried several different meds which don't seem to be doing anything. Starting to search for physical reasons for fatigue...thyroid is fine. My PCP seems to think it is probably CFS. Been to an allergist who told me I was allergic to everything and probably have CFS. Referred to rheaumatolgist.
> >
> > Bottom line, how do you tease out the fatigue,etc. of CFS from good ole' depression.
> >
> > Thanks so much in advance!
> >
> > dazed
>
> It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
>
> For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
>
> CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
>
> When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
>
> Lar
>
>Hey Larry,
Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board. I lurk often, post seldom, and always read your posts (though many go over my head).What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent. But I firmly believe a firm diagnosis is necessary. If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
A couple of notes/questions.
1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.
2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities. I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts"). Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done. Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.
THANK YOU!!!
dazed
Posted by Ilene on August 20, 2004, at 13:41:43
In reply to Ilene - how was your CFS diagnosed?, posted by dazedandconfused on August 20, 2004, at 11:48:29
I never thought of fatigue as my primary symptom. I was getting frequent recurrences of what I thought of as flu. I had sore throats, swollen glands, stomach problems, cognitive difficulties, and malaise. In between I was okay.
My misdiagnoses included hepatitis C and ulcers.
I was diagnosed w/ CFS by a rheumatologist/immunologist at George Washington University Medical Center in Washington, DC. It was based on exclusion of everything else plus my history.
I also had post-exertional fatigue, but at the time I didn't know it was abnormal.
It turns out I have neurally mediated hypotension, which is associated with CFS.
I get light-headed in the heat, sometimes even after a shower, after I exercise, and sometimes after drinking coffee.
I had the CFS under control for several months by avoiding heat and exercise, but it returned when I was under extreme stress.
I don't have any major allergies (some things give me a little hay fever) or food sensitivities.
I started getting symptoms about 20 years ago. I don't recall any particular illness as a trigger. I've been depressed since I was a child, so I don't know if the depression is entirely distinct or not.
The internist who used to treat me prescribed Florinef for my low blood pressure. It seems to help, esp. since I'm taking an MAOI that lowers my BP. Other than that I take vitamins and minerals, when I remember.
The internist I who was treating me before I moved said he considered depression a symptom of CFS. He said his patients needed very high doses of ADs. (He is also Laura Hillenbrand's MD. She's the author of Sea Biscuit, and has written and been interviewed about her CFS.)
Posted by dazedandconfused on August 20, 2004, at 13:41:44
In reply to Re: Ilene - how was your CFS diagnosed? » dazedandconfused, posted by Ilene on August 20, 2004, at 13:21:11
> I never thought of fatigue as my primary symptom. I was getting frequent recurrences of what I thought of as flu. I had sore throats, swollen glands, stomach problems, cognitive difficulties, and malaise. In between I was okay.
>
> My misdiagnoses included hepatitis C and ulcers.
>
> I was diagnosed w/ CFS by a rheumatologist/immunologist at George Washington University Medical Center in Washington, DC. It was based on exclusion of everything else plus my history.
>
> I also had post-exertional fatigue, but at the time I didn't know it was abnormal.
>
> It turns out I have neurally mediated hypotension, which is associated with CFS.
>
> I get light-headed in the heat, sometimes even after a shower, after I exercise, and sometimes after drinking coffee.
>
> I had the CFS under control for several months by avoiding heat and exercise, but it returned when I was under extreme stress.
>
> I don't have any major allergies (some things give me a little hay fever) or food sensitivities.
>
> I started getting symptoms about 20 years ago. I don't recall any particular illness as a trigger. I've been depressed since I was a child, so I don't know if the depression is entirely distinct or not.
>
> The internist who used to treat me prescribed Florinef for my low blood pressure. It seems to help, esp. since I'm taking an MAOI that lowers my BP. Other than that I take vitamins and minerals, when I remember.
>
> The internist I who was treating me before I moved said he considered depression a symptom of CFS. He said his patients needed very high doses of ADs. (He is also Laura Hillenbrand's MD. She's the author of Sea Biscuit, and has written and been interviewed about her CFS.)Ilene,
Thanks so much for your post. If you don't mind my asking, could you tell me a bit about your cognitive problems, malaise, and post-exertional fatigue? I ask because I definitely have cognitive difficulties (ADD like symptoms I posted in my above "Larry youre my idol post). I am able to exercise but nowhere near what I used to be able to. I walk instead of run, do yoga, pilates, stuff like that. I try to do cardio 3-5 times a week for 30 min. and can even do strenth training at times. Although one of my symptoms is an overall feeling of weakness. I sometimes get dizzy when I exercise and ususally have to lay down for awhile afterwards.I sometimes wonder if suffering an episode of major depression was the so called "trigger" that started the CFS...
Thanks again. I really need some help at this point.
Posted by Ilene on August 20, 2004, at 20:08:18
In reply to Ilene, posted by dazedandconfused on August 20, 2004, at 13:32:01
I forgot to note the swollen lymph nodes and muscle aches. Cognitive problems are forgetfulness (see above), inability to concentrate, and a sense of fogginess or fuzziness.
Getting dizzy and wanting to lie down after exercise sure sounds familiar.
Here are some links to info about NMH:
http://www.geocities.com/HotSprings/Spa/4225/neurally.html
http://home.vicnet.net.au/~mecfs/general/nmh1.html
http://home.vicnet.net.au/~mecfs/general/nmh.html
http://www.cfids.org/youth/articles/medical/rowe95.asp
http://www.ourfm-cfidsworld.org/html/nmh.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=95404846
http://www.immunesupport.com/library/showarticle.cfm/ID/3499/e/1/T/CFIDS_FM/
and on and on and on...just do a google searchNot all researchers think that there is a link between NMH & CFS. Because the CFS diagnosis is often one of exclusion I think there is probably more than one cause. The two conditions also exist independently.
I never had a tilt table test. It sounds ghastly. I self-diagnosed, and when I found a doc who was familiar w/ the condition he agreed with me.
Posted by dazedandconfused on August 20, 2004, at 21:09:59
In reply to Re: Ilene » dazedandconfused, posted by Ilene on August 20, 2004, at 20:08:18
Hi Ilene,
Thanks again. I appreciate the links re NMH. I am on a waiting list to see Dr. Nancy Klimas at Miami who I believe does the tilt table test. My blood pressure ususally runs low - @60/100 or so. With my luck, I probably have it.Sorry if I missed it, but did you say how your malaise and post-exertional fatigue manifest itself? Are you able to exercise?
THANKS!
Dazed
Posted by KaraS on August 21, 2004, at 4:01:46
In reply to Treatments for CFS or fibro, posted by Ilene on August 20, 2004, at 10:47:17
> The more I read, the more confused I get, which tells me that no one really understands what's going on. For example, infections are always treated with antibiotics, but what I find when I read these articles is a laundry list of herbs and supplements that *might* help.
>
> My CFS is often triggered by hypotension, but not always.
>
> I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.
I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.Good luck.
Kara
Posted by Larry Hoover on August 21, 2004, at 10:36:37
In reply to Treatments for CFS or fibro, posted by Ilene on August 20, 2004, at 10:47:17
> The more I read, the more confused I get, which tells me that no one really understands what's going on. For example, infections are always treated with antibiotics, but what I find when I read these articles is a laundry list of herbs and supplements that *might* help.
If the link to viral illness is more than illusory, you may get an insight from what viruses do, when we're infected by one. They insert their own DNA into our cells, and at least in part, hijack our own biochemical machinery. From that point onwards, you're not just dealing with the genes God gave you. You're God-given + viral DNA (which may be from Hades, for all I know).
>
> My CFS is often triggered by hypotension, but not always.
>
> I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.Try checking here:
http://www.co-cure.org/Good-Doc.htmMy difficulty in obtaining specialized care is that treatment of FMS or CFS is very intensive, from the standpoint of time and effort spent with each patient. Many or most of the good ones are booked solid. First come, first served. Some of the better ones have dedicated clinics, so the supports are given by associated staff, not just by the doctor themself. That said, others use the clinics as money factories. I'm a cynic, I guess.
Lar
Posted by Larry Hoover on August 21, 2004, at 11:10:06
In reply to Larry - you're my idol!, posted by dazedandconfused on August 20, 2004, at 12:57:05
Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
> > It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
> >
> > For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
> >
> > CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
> >
> > When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
> >
> > Lar> Hey Larry,
> Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board.
And by saying so, you make it all the more likely that I will continue. Thanks.
> I lurk often, post seldom, and always read your posts (though many go over my head).
Don't be afraid to ask for the Cliff's Notes version, okay? By the nature of a question, I can often figure out just what the next bit in your personal comprehension is. If I miss the mark, I'm happy to try again. 'Kay?
> What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
Frustrated. Ya. I get it.
> I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent.
Your pdoc is wrong. The whole point of a sleep study is to study *your* sleep. Not a hypothetical average guy's sleep.
> But I firmly believe a firm diagnosis is necessary.
Yes, it is.
> If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
You can't go wrong posting here, it seems. Bob might move you around, but there is always somewhere, here.
> A couple of notes/questions.
Yay!
> 1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.Restorative sleep, the feeling that you got enough, comes from specific types of sleep. If you're not getting those stages, in sufficient amounts, your body can react by increasing the tendency to sleep....but that still can fail. You hypersleep, but still wake sleep-deprived.
CFS/fibro can also manifest with intractable insomnia. I suspect it has to do with whether your adrenals have failed yet, or not. But I don't want to distract this discussion onto a hypothetical tangent..... Push for a sleep study. Push hard.
> 2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities.
Good call, to check for brain/CNS abnormalities.
> I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts").
Just as there is no real definitive diagnostic test, there is no definitive treatment. Nonetheless, there are treatment protocols. You try things that have worked for others, and if e.g. sleep restorative parameters, and cognition improve, then you're on the right track....your right track.
Still, in your case, I'm intuitively drawn to sleep issues. Get that bit sorted out, and your other things may well resolve. You may just be chronically and massively sleep-deprived, despite the hypersomnia.
> Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done.
Ahh, but you successfully focus on Internet work. Don't dismiss that, okay? You're following your gut, non?
> Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
Yup, lucky. Lucky have (assumed) understanding partner, too.
> 3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?
Can make things worse, if you haven't addressed the underlying vulnerabilities. Like flogging a tired horse. You get a little more output, but at a very high price.
Get a foundation, then think about the house (type of life) you can build on that.
> Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.Respectfully is nice, but I don't like to sit on the pedestal. I'm afraid of heights.
> THANK YOU!!!
WELCOME!
> dazedNot so dazed, from this perspective....
Lar
Posted by Larry Hoover on August 21, 2004, at 11:17:18
In reply to Re: Ilene » dazedandconfused, posted by Ilene on August 20, 2004, at 20:08:18
> Getting dizzy and wanting to lie down after exercise sure sounds familiar.
>
> Here are some links to info about NMH:
>
> http://www.geocities.com/HotSprings/Spa/4225/neurally.html
> http://home.vicnet.net.au/~mecfs/general/nmh1.html
> http://home.vicnet.net.au/~mecfs/general/nmh.html
> http://www.cfids.org/youth/articles/medical/rowe95.asp
> http://www.ourfm-cfidsworld.org/html/nmh.html
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=95404846
> http://www.immunesupport.com/library/showarticle.cfm/ID/3499/e/1/T/CFIDS_FM/
> and on and on and on...just do a google search
>
> Not all researchers think that there is a link between NMH & CFS. Because the CFS diagnosis is often one of exclusion I think there is probably more than one cause. The two conditions also exist independently.My impression of the link between the two is that NMH indicates the individual is over-exerting at their particular resiliency level. It is all too easy to compare your current exercise exertion both to others around you, and more critically, to your own past abilities. You get over your own current real-time threshold, and your heart gets messed up.
With CFS, you can and will over-exert. It's the nature of the beast. One manifestation of over-exertion is NMH. You manage CFS, or it will manage you.
Just my cognitive perspective,
Lar
Posted by Ilene on August 21, 2004, at 13:19:21
In reply to Re: Ilene, posted by dazedandconfused on August 20, 2004, at 21:09:59
> Hi Ilene,
> Thanks again. I appreciate the links re NMH. I am on a waiting list to see Dr. Nancy Klimas at Miami who I believe does the tilt table test. My blood pressure ususally runs low - @60/100 or so. With my luck, I probably have it.
>You don't need to have low blood pressure to have NMH, but I think it's more common than not. Good luck w/ the tilt table test.
> Sorry if I missed it, but did you say how your malaise and post-exertional fatigue manifest itself? Are you able to exercise?
I used to swim 2-3 miles/week, but it was making me sicker and sicker without my realizing that was the cause. Symptoms:
It took me much longer to get into condition than anyone else. I pretty much plateaued at a medium level of fitness.
I would climb out of the pool and immediately feel overheated. I could walk out into below-freezing weather with wet hair and feel comfortable.
I felt limp, exhausted, and light-headed. After swimming a mile I could hardly carry my swim bag up the stairs.
In the tropical summers of Washington DC I would sweat profusely, feel exhausted and light-headed. The same thing happens when I stay in a hot shower too long.My old internist said I could probably exercise again, but I haven't gotten set up yet. I'll probably put my bike on a stand and get a heart rate monitor. In theory, if I keep my heart rate down I should be able to exercise. I would walk if I could, but I have bad feet.
Stress also triggers the CFS, and lately I've had bad days with no apparent trigger.
>
Posted by Ilene on August 21, 2004, at 13:28:02
In reply to Re: Treatments for CFS or fibro » Ilene, posted by KaraS on August 21, 2004, at 4:01:46
>
>
> I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
>My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.
Posted by Ilene on August 21, 2004, at 13:39:42
In reply to Re: Treatments for CFS or fibro » Ilene, posted by Larry Hoover on August 21, 2004, at 10:36:37
> > I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.
>
> Try checking here:
> http://www.co-cure.org/Good-Doc.htm
>Thanks for the link. No docs on it that are actually in San Francisco. You'd think there'd be at least one.
> My difficulty in obtaining specialized care is that treatment of FMS or CFS is very intensive, from the standpoint of time and effort spent with each patient. Many or most of the good ones are booked solid. First come, first served. Some of the better ones have dedicated clinics, so the supports are given by associated staff, not just by the doctor themself. That said, others use the clinics as money factories. I'm a cynic, I guess.
>I hear what you say about money factories. I'm a cynic too. I was really lucky to find my doc in D.C.
Posted by Ilene on August 21, 2004, at 13:55:58
In reply to Re: Ilene » Ilene, posted by Larry Hoover on August 21, 2004, at 11:17:18
> My impression of the link between the two is that NMH indicates the individual is over-exerting at their particular resiliency level. It is all too easy to compare your current exercise exertion both to others around you, and more critically, to your own past abilities. You get over your own current real-time threshold, and your heart gets messed up.
>
> With CFS, you can and will over-exert. It's the nature of the beast. One manifestation of over-exertion is NMH. You manage CFS, or it will manage you.
>
> Just my cognitive perspective,
> LarMaybe, except that the drop in BP can be triggered by heat and psychological stress. I suppose you could consider these a form of over-exertion. Not only is NMH poorly understood, but the details of the connection between it and CFS are completely mysterious.
Posted by Larry Hoover on August 21, 2004, at 14:16:59
In reply to Re: Ilene, posted by Ilene on August 21, 2004, at 13:55:58
> Maybe, except that the drop in BP can be triggered by heat and psychological stress. I suppose you could consider these a form of over-exertion. Not only is NMH poorly understood, but the details of the connection between it and CFS are completely mysterious.
>One of your links connected the specific effect to a parodoxical response to adrenaline. The key disruption in CFS is, IMHO, adrenal. Heat and psychological stressors can both trigger adrenal responses....
Anyway, I was just speculating. I know my own CFS is a mysterious beast. I hesitate to extrapolate to others.
Lar
Posted by KaraS on August 21, 2004, at 17:09:38
In reply to Re: Treatments for CFS or fibro » KaraS, posted by Ilene on August 21, 2004, at 13:28:02
> >
> >
> > I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
> >
>
> My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.
Really? That's quite disheartening even to a cynic like me. Yet the profits from many, if not all, of his supplements go to charity (or so he claims).I also wanted to add that I have symptoms that are a lot like yours. (The flu-like symptoms that come and go. One that you didn't mention that is prevalent for me is nausea.) I am convinced that my CFS is viral. There was a definite viral onset. I was diagnosed almost 20 years ago as well. The CFS comes and goes for me also. I get it if I'm particularly run down - usually when I haven't had enough sleep, don't take my vitamins or if I'm exposed to some other kind of viral illness. (It's as if my immune system jumps to protect me from that and the CFS virus exploits the opening.) It's no where near as severe or as frequent or as long lasting per episode as when I was diagnosed 20 years ago. It's just something I've learned to live with now. It was so bad 20 years ago that I thought my life was over. I guess it was for a while there.
-Kara
Posted by dazedandconfused on August 21, 2004, at 17:43:45
In reply to Re: Larry - you're my idol! » dazedandconfused, posted by Larry Hoover on August 21, 2004, at 11:10:06
> Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
I was counting on it!!
> > > It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
> > >
> > > For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
> > >
> > > CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
> > >
> > > When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
> > >
> > > Lar
>
> > Hey Larry,
>
> > Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board.
>
> And by saying so, you make it all the more likely that I will continue. Thanks.No, no...thank you. Really.
> > I lurk often, post seldom, and always read your posts (though many go over my head).
>
> Don't be afraid to ask for the Cliff's Notes version, okay? By the nature of a question, I can often figure out just what the next bit in your personal comprehension is. If I miss the mark, I'm happy to try again. 'Kay?Will do...
> > What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
>
> Frustrated. Ya. I get it.
Frustrated. And a tad irritable. Who can blame us. Sigh...> > I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent.
>
> Your pdoc is wrong. The whole point of a sleep study is to study *your* sleep. Not a hypothetical average guy's sleep.Noted.
> > But I firmly believe a firm diagnosis is necessary.
>
> Yes, it is.Thank for for your affirmation. After I decided to heck with the experts and to become fully accountable for my own health, it seemed as if I was viewed as a hypochondriac ("You sure think about your symptoms a lot don't you...). Truth be told, I'm the opposite of a hypochondriac...ignored my health for years...which probably contributed to my illness. Vent......
>
> > If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
>
> You can't go wrong posting here, it seems. Bob might move you around, but there is always somewhere, here.Very true.
> > A couple of notes/questions.
>
> Yay!
>
> > 1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.
>
> Restorative sleep, the feeling that you got enough, comes from specific types of sleep. If you're not getting those stages, in sufficient amounts, your body can react by increasing the tendency to sleep....but that still can fail. You hypersleep, but still wake sleep-deprived.
>
> CFS/fibro can also manifest with intractable insomnia. I suspect it has to do with whether your adrenals have failed yet, or not. But I don't want to distract this discussion onto a hypothetical tangent..... Push for a sleep study. Push hard.I will. Tapering off Effexor now. Other than that, take Xanax as needed to get to sleep. Would like to have study done when I am as "clean" as possible.
>
> > 2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities.
>
> Good call, to check for brain/CNS abnormalities.Not sure about this. I had neuropsyological testing done by a psycholgist. Stuff like the MMPI, written tests, etc. No brain scans , MRI, or the like. Actually, side note, had a QEEG done by Dr. Arnold Lieber (has a couple of articles on Dr. Ivan Goldberg's site). He diagnosed me as bipolar. He's not my PDOC though. And he is the only one out of four I interviewed who reached that diagnosis. Kinda interesting...brain imaging holds such promise I believe.
> > I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts").
>
> Just as there is no real definitive diagnostic test, there is no definitive treatment. Nonetheless, there are treatment protocols. You try things that have worked for others, and if e.g. sleep restorative parameters, and cognition improve, then you're on the right track....your right track.Noted. I still feel it is important to distinguish between ADD and cognitive impairments associated with CFS. By intuition, it would appear they could be distinguished by whether symptoms were apparent in childhood or not.
> Still, in your case, I'm intuitively drawn to sleep issues. Get that bit sorted out, and your other things may well resolve. You may just be chronically and massively sleep-deprived, despite the hypersomnia.Noted.
> > Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done.
>
> Ahh, but you successfully focus on Internet work. Don't dismiss that, okay? You're following your gut, non?Again, you are right...and thank you for the affirmation. I feel like until I get my health straight, nothing else much matters. And yes, I tend to hyperfocus on the computer...
> > Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
>
> Yup, lucky. Lucky have (assumed) understanding partner, too.Very understanding. I am harder on myself than anyone. We both agree my job right now is to get my health straight (with larry's help of course...:)
> > 3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?
>
> Can make things worse, if you haven't addressed the underlying vulnerabilities. Like flogging a tired horse. You get a little more output, but at a very high price.Noted and agreed. PDOC prescribed Provigil but I haven't taken it for the very reason you describe (something doesn't add up when I need Xanax to get to sleep and Provigil to stay awake). Does your opinion vary if person has CFS and ADD?
> Get a foundation, then think about the house (type of life) you can build on that.
That is a wonderful analogy.
> > Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.
I am still drafting it. It may be a doozy...
> Respectfully is nice, but I don't like to sit on the pedestal. I'm afraid of heights.I hope you know how much you are needed here and how much you contribute to this board.
> > THANK YOU!!!
>
> WELCOME!
>
> > dazed
>
> Not so dazed, from this perspective....Too kind...
> LarThanks again,
dazedPS
"Larry Hoover for President!!"
(subtlety is not my strong suit...)
Posted by dazedandconfused on August 21, 2004, at 17:50:03
In reply to Re: Ilene » dazedandconfused, posted by Ilene on August 21, 2004, at 13:19:21
> > Hi Ilene,
> > Thanks again. I appreciate the links re NMH. I am on a waiting list to see Dr. Nancy Klimas at Miami who I believe does the tilt table test. My blood pressure ususally runs low - @60/100 or so. With my luck, I probably have it.
> >
>
> You don't need to have low blood pressure to have NMH, but I think it's more common than not. Good luck w/ the tilt table test.Thanks! Although it may be awhile...this doc has a year's waiting list!
> > Sorry if I missed it, but did you say how your malaise and post-exertional fatigue manifest itself? Are you able to exercise?
>
> I used to swim 2-3 miles/week, but it was making me sicker and sicker without my realizing that was the cause. Symptoms:
> It took me much longer to get into condition than anyone else. I pretty much plateaued at a medium level of fitness.
> I would climb out of the pool and immediately feel overheated. I could walk out into below-freezing weather with wet hair and feel comfortable.
> I felt limp, exhausted, and light-headed. After swimming a mile I could hardly carry my swim bag up the stairs.A fellow swimmer! I swam competitively for @15 years. I rarely step foot in a pool anymore though. I really don't enjoy it anymore...that black line is permanently engrained in my mind....
> In the tropical summers of Washington DC I would sweat profusely, feel exhausted and light-headed. The same thing happens when I stay in a hot shower too long.
Tropical...I am in Miami. Used to live in southeast VA...close to DC. I get tired in a showere also. I actually have to lay down after I take a shower...
> My old internist said I could probably exercise again, but I haven't gotten set up yet. I'll probably put my bike on a stand and get a heart rate monitor. In theory, if I keep my heart rate down I should be able to exercise. I would walk if I could, but I have bad feet.
I am able to walk for exercise still. I guess I'm lucky...
> Stress also triggers the CFS, and lately I've had bad days with no apparent trigger.
> >
Hope your days improve...
Posted by dazedandconfused on August 21, 2004, at 17:51:01
In reply to Re: Treatments for CFS or fibro » KaraS, posted by Ilene on August 21, 2004, at 13:28:02
> >
> >
> > I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
> >
>
> My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.That is surprising...
dazed
Posted by dazedandconfused on August 21, 2004, at 17:56:13
In reply to Re: Treatments for CFS or fibro » Ilene, posted by KaraS on August 21, 2004, at 17:09:38
> > >
> > >
> > > I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
> > >
> >
> > My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.
>
>
> Really? That's quite disheartening even to a cynic like me. Yet the profits from many, if not all, of his supplements go to charity (or so he claims).
>
> I also wanted to add that I have symptoms that are a lot like yours. (The flu-like symptoms that come and go. One that you didn't mention that is prevalent for me is nausea.) I am convinced that my CFS is viral. There was a definite viral onset. I was diagnosed almost 20 years ago as well. The CFS comes and goes for me also. I get it if I'm particularly run down - usually when I haven't had enough sleep, don't take my vitamins or if I'm exposed to some other kind of viral illness. (It's as if my immune system jumps to protect me from that and the CFS virus exploits the opening.) It's no where near as severe or as frequent or as long lasting per episode as when I was diagnosed 20 years ago. It's just something I've learned to live with now. It was so bad 20 years ago that I thought my life was over. I guess it was for a while there.
>
> -Kara
>
>Kara,
I am so glad and encouraged to hear you are doing better. I am really concerned if I have CFS becuase if I do have it, its been misdiagnosed as depression for the last 2-3 years. My sickness / fatigue definitely began with a burnout - major depression, body just stopped. I don't remember a viral infection, but up until that time I got frequent sinus infections so that would not have been out of the ordinary for me.If you don't mind my asking, were you depresed before, during, ater the CFS diagnosis? How were you diagnosed?
Thanks,
dazed
Posted by dazedandconfused on August 21, 2004, at 17:57:27
In reply to Re: Treatments for CFS or fibro, posted by dazedandconfused on August 21, 2004, at 17:56:13
Posted by KaraS on August 21, 2004, at 18:55:13
In reply to Re: Treatments for CFS or fibro, posted by dazedandconfused on August 21, 2004, at 17:56:13
> > > >
> > > >
> > > > I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
> > > >
> > >
> > > My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.
> >
> >
> > Really? That's quite disheartening even to a cynic like me. Yet the profits from many, if not all, of his supplements go to charity (or so he claims).
> >
> > I also wanted to add that I have symptoms that are a lot like yours. (The flu-like symptoms that come and go. One that you didn't mention that is prevalent for me is nausea.) I am convinced that my CFS is viral. There was a definite viral onset. I was diagnosed almost 20 years ago as well. The CFS comes and goes for me also. I get it if I'm particularly run down - usually when I haven't had enough sleep, don't take my vitamins or if I'm exposed to some other kind of viral illness. (It's as if my immune system jumps to protect me from that and the CFS virus exploits the opening.) It's no where near as severe or as frequent or as long lasting per episode as when I was diagnosed 20 years ago. It's just something I've learned to live with now. It was so bad 20 years ago that I thought my life was over. I guess it was for a while there.
> >
> > -Kara
> >
> >
>
> Kara,
> I am so glad and encouraged to hear you are doing better. I am really concerned if I have CFS becuase if I do have it, its been misdiagnosed as depression for the last 2-3 years. My sickness / fatigue definitely began with a burnout - major depression, body just stopped. I don't remember a viral infection, but up until that time I got frequent sinus infections so that would not have been out of the ordinary for me.
>
> If you don't mind my asking, were you depresed before, during, ater the CFS diagnosis? How were you diagnosed?
>
> Thanks,
> dazed
>
Dazed,
I would not say that I'm doing well now but I do feel one hundred times better in terms of the CFS flu-like symptoms. I had depression before, and now during, CFS. Of course they feed on each other and make each other worse (probably both physically and psychologically). The depression is really the reason that I got CFS to begin with. I was severely depressed and I decided to stop taking the 25 mg. of doxepin I was on (which allowed me to sleep) so that I wouldn't be groggy ever day until dinnertime. BIG MISTAKE!!! I stopped sleeping and got a horrible cold. Still I wasn't sleeping. Once the cold ended, I immediately got this flu (the CFS) which has never completely gone away. My body is better at keeping it at bay than it was 20 years ago but I know that it's there lying in wait for the minute my defenses are down.Forunately, I found a wonderful doctor in my HMO (believe that? after dealing with a couple of total idiots first though), and he diagnosed it, then sent me to a virologist (I think that's how you say a virus specialist) and he concurred. I had very obvious viral symptoms in the beginning like a throat sore throat that looked like it might be strep but was tested and turned out negative. I also had swollen glands, digestive problems, diahhrea etc. This doctor was incredible - so supportive at a time when others in the medical community weren't even accepting this as a real illness. If I hadn't found him then, I shudder to think what might have happened to me. (This doctor went to Harvard Medical School and in his spare time he donated his services for free to the homeless. Truly a saint!)
Unfortunately, the CFS, depression and other stressors have led to adrenal fatigue. I differentiate this from the CFS because there aren't the obvious viral symptoms involved with it. Actually, Larry is the one who mentioned adrenal fatigue to me recently and helped me to see the connection to my other health issues. Once I did some research, it all started making a lot of sense to me.
You mentioned above that you had a lot of sinus infections. I also developed a lot of sinus problems for a few years (after my CFS diagnosis though) but that seems to have gone away. Thank goodness. Again, these things are all so interrelated. The doctors often see multiple complaints and decide that you're a hypochondriac when the truth is that these conditions are all so interrelated. You get one of them and they can easily lead to so many other problems. (That's why I now favor holistic doctors for these types of issues. They're more apt to understand this on an intuitive level.) Anyway, fortunately, one can recognize all of this and proceed from there for treatment.
Hope that all helps.
Kara
Posted by Larry Hoover on August 22, 2004, at 8:41:31
In reply to Re: Larry - you're my idol!, posted by dazedandconfused on August 21, 2004, at 17:43:45
> > Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
> I was counting on it!!Nota bene: I didn't change it, either. ;-)
> > Your pdoc is wrong. The whole point of a sleep study is to study *your* sleep. Not a hypothetical average guy's sleep.
>
> Noted.
>
> > > But I firmly believe a firm diagnosis is necessary.
> >
> > Yes, it is.
>
> Thank for for your affirmation. After I decided to heck with the experts and to become fully accountable for my own health, it seemed as if I was viewed as a hypochondriac ("You sure think about your symptoms a lot don't you...). Truth be told, I'm the opposite of a hypochondriac...ignored my health for years...which probably contributed to my illness. Vent......Me too. Remember when CFS was called the Yuppie Flu? Talk about trivializing the suffering of others.
For most people, what it takes to get a credible level of support for their symptoms is persistence, in spite of the attitudes of others. After time, the cogent variable becomes the length of time that these symptoms have persisted. Moreover, unlike hypochondria, which links symptoms from diverse and unconnected parts of the body, CFS manifests itself as absolutely consistent and persistent symptom clusters.
> > > 1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.
> >
> > Restorative sleep, the feeling that you got enough, comes from specific types of sleep. If you're not getting those stages, in sufficient amounts, your body can react by increasing the tendency to sleep....but that still can fail. You hypersleep, but still wake sleep-deprived.
> >
> > CFS/fibro can also manifest with intractable insomnia. I suspect it has to do with whether your adrenals have failed yet, or not. But I don't want to distract this discussion onto a hypothetical tangent..... Push for a sleep study. Push hard.
>
> I will. Tapering off Effexor now. Other than that, take Xanax as needed to get to sleep. Would like to have study done when I am as "clean" as possible.Generally, the best idea. I hope your withdrawal from Effexor is uneventful.
> > > 2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities.
> >
> > Good call, to check for brain/CNS abnormalities.
>
> Not sure about this. I had neuropsyological testing done by a psycholgist. Stuff like the MMPI, written tests, etc.OK, that's actually going to be very useful for you. There are a number of different sub-scales within the MMPI that assess hypochondria, the tendency to exaggerate complaints, your locus of control (internal control is ideal, as you manage your own world, versus external control, which leaves you the victim of everything around you), somatization..... What were your results like?
> No brain scans , MRI, or the like. Actually, side note, had a QEEG done by Dr. Arnold Lieber (has a couple of articles on Dr. Ivan Goldberg's site). He diagnosed me as bipolar. He's not my PDOC though. And he is the only one out of four I interviewed who reached that diagnosis. Kinda interesting...brain imaging holds such promise I believe.
Indeed. The hard line that some draw between e.g. major depression and bipolar is an artifact of the nosology (the organization of diagnostic parameters) rather than an empirical fact. Mother Nature doesn't draw lines, last time I looked. You might want to check out the following website. It expands the thinking from that in the DSM. http://www.psycheducation.org/depression/02_diagnosis.html
Look around the site. It has a lot of information and ideas.> > > I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts").
> >
> > Just as there is no real definitive diagnostic test, there is no definitive treatment. Nonetheless, there are treatment protocols. You try things that have worked for others, and if e.g. sleep restorative parameters, and cognition improve, then you're on the right track....your right track.
>
> Noted. I still feel it is important to distinguish between ADD and cognitive impairments associated with CFS. By intuition, it would appear they could be distinguished by whether symptoms were apparent in childhood or not.Possibly, but recall from childhood is notoriously unreliable. Children have not yet developed the capacity to self-assess. Some adults never get that far.
The distinction between the two diagnostic categories is generally left to empirical processes. The "treatments" or coping strategies for each are distinct enough that you can infer the nature of the problem based on whichever processes seem to be more helpful. Medicine is like that a lot. A lot more than people imagine it is, anyway.
> > Ahh, but you successfully focus on Internet work. Don't dismiss that, okay? You're following your gut, non?
>
> Again, you are right...and thank you for the affirmation.I'm good at that part. :-)
> I feel like until I get my health straight, nothing else much matters. And yes, I tend to hyperfocus on the computer...
So, you *can* focus. Right now it's targeted. Nothing wrong with that. It's what you know you need to do. You gotta figure out why your life feels like so much work.
There are other aspects of Internet, of course. You meet people like me, that way. <very tongue in cheek> I get cheeky when I'm feeling betterer.
> > > Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
> >
> > Yup, lucky. Lucky have (assumed) understanding partner, too.
>
> Very understanding. I am harder on myself than anyone.You can do something about that part, too. Comparing yourself is hard work. The old you is not relevant right now. The stuff you wish you could do only burdens you further, to the extent you worry about those expectations.
Here's a little Larry anecdote.
About six year ago, I was going through an amazingly rough stretch. I'd get up in the morning, stumble down the hall to the couch, lie there all day, and stumble off to bed. I may or may not have bathed. I may or may not have eaten. I lost all track of time and calendar. I missed a hearing for disability eligibility altogether (the dismissal notice came six weeks after, and I went, "Huh? That happened already?") Ya know? Totally messed.
I did get my sh....er stuff together enough to make it to some counselling sessions, doctor's appointments, but of course they saw me bathed. Still, I made it out. But the rest of the time, I just lay there, thinking about the disastrous condition of my apartment, of my life....
My couch was one of those futon things. I noted that there had actually been created this dent in the surface, this Larry-shaped dent, from my daily laying there. It made me even sadder.
Then, one day, I had an epiphany. I realized that one of the reasons I wasn't getting anything done is because I used up all my energy lying there and thinking about the mess. That day, as I made my way to the couch, I looked at the Larry-shaped dent in a new light. I saw it as the futon's special Larry-shaped place. It was waiting to hold me, so I could rest. And as I lay down that day, I felt it cradle me, and I felt secure and protected. I truly rested, that day. And the next. But those were my last ever couch days. I didn't do that any more.
From that experience, I developed my concept of energy budgeting. I had real evidence to show the waste of energy from the inefficiencies of comparing myself to my past performance, and from carrying around unmet (and unrealistic) expectations. Every day, in every way, I'm the best that I can be. And that is good enough, for me. That is good enough, for ME.
> We both agree my job right now is to get my health straight (with larry's help of course...:)
....reporting for duty, ma'am.
> > > 3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?
> >
> > Can make things worse, if you haven't addressed the underlying vulnerabilities. Like flogging a tired horse. You get a little more output, but at a very high price.
>
> Noted and agreed. PDOC prescribed Provigil but I haven't taken it for the very reason you describe (something doesn't add up when I need Xanax to get to sleep and Provigil to stay awake). Does your opinion vary if person has CFS and ADD?No. The CFS has to be respected, too. I would start there. What you're thinking of as ADD might be complicated or exacerbated by the other stuff.
> > Get a foundation, then think about the house (type of life) you can build on that.
>
> That is a wonderful analogy.Thank you.
> > > Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.
>
> I am still drafting it. It may be a doozy...Doozy me, baybee! <said teasingly>
> > Respectfully is nice, but I don't like to sit on the pedestal. I'm afraid of heights.
>
> I hope you know how much you are needed here and how much you contribute to this board.I keep getting reminded of that. My childhood has made it so hard for me to accept compliments, to even accept my own assessments of my behaviours, if they are positive in character. I'm working on it.
> > > THANK YOU!!!
> >
> > WELCOME!
> >
> > > dazed
> >
> > Not so dazed, from this perspective....
>
> Too kind...Too honest?
> > Lar
>
> Thanks again,
> dazed
>
> PS
> "Larry Hoover for President!!"
> (subtlety is not my strong suit...)I wonder if I am an American citizen, too. My dad's from California. Does that give me dual citizenship, and thus, at least technical eligibility for the Presidancy?
Lar
Posted by Larry Hoover on August 22, 2004, at 8:50:49
In reply to Re: Treatments for CFS or fibro » dazedandconfused, posted by KaraS on August 21, 2004, at 18:55:13
> Unfortunately, the CFS, depression and other stressors have led to adrenal fatigue. I differentiate this from the CFS because there aren't the obvious viral symptoms involved with it. Actually, Larry is the one who mentioned adrenal fatigue to me recently and helped me to see the connection to my other health issues. Once I did some research, it all started making a lot of sense to me.
That is so cool, when that happens. Honour thy gut, Kara.
Lar
Posted by corafree on November 15, 2004, at 17:24:55
In reply to Re: Treatments for CFS or fibro » KaraS, posted by Larry Hoover on August 22, 2004, at 8:50:49
Larry, it's Mon a.m. I had three appts today. I paid $30 for missing one. I prob' have 5-8 appts a week. I am absolutely overwhelmed. Besides mental health issues, I have two particular physical probs' in need of immediate attn. Besides those, I wonder re: IBS, CFS, and feel have a bit of attention prob'. I just want to throw up and give up! How can I get back on the track? I've reached out for help. The only two peeps that help, one my daughter, one my rainydayman. I describe him as such 'cuz he used to be a meth addict, now in recovery 6 mos. My daughter is a jr hi teacher and mo of 2. Her time is little. The man, on the other hand, will run to me if not at meeting or some NA function. I need him like a cane. I need some thrust. We spent 9 yrs in and out of relationship..never lived together. He seems to be on his way to a good place. He will take me w/ him if I want. I am alone. Do I dare commit to this man who may save me from my oversleeping, overwhelming appts, and move me into a different kind of 'loneliness'. I am desperate. I am not in love w/ him as I once was. He loves me desperately. I need a break soooooooo bad. Can you babble me?
Posted by Ed O`Flaherty on October 7, 2005, at 10:33:10
In reply to Re: Treatments for CFS or fibro » dazedandconfused, posted by KaraS on August 21, 2004, at 18:55:13
I have added a piece on chronic fatigue and fibromyalgia to my website at www.omega3.20megsfree.com. Basically it involves EPA fish oil,evening primrose oil and a prescrinbed drug called naltrexone in a low dose.
This is the end of the thread.
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