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MED: CFS diagnosis?
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| John Richards 2005-06-21, 10:48 pm |
| This is my first post here, so bear with me if I'm making mistakes
or violating some rules.
I've been bothered by severe fatigue for some six years now,
and am wondering if it could be CFS. Looking at the official list
of definitive criteria, in order to be diagnosed the patient must
have at least four of the eight listed symptoms (besides fatigue).
Of those, I only have two:
Impaired memory/poor concentration
Unrefreshing sleep
However, when I look at the longer list of typical CFS symptoms,
I see several others that I have:
Muscle weakness
Mental depression (not helped by SSRI medication)
Intolerance to bright lights
Intolerance to loud sounds
Irritable bowel syndrome (diarrhea)
Joint stiffness (mostly in he morning)
Nocturia
If it matters, I am a 61 year old male, forced into early retirement.
So, my question is, do I have CFS or should I be looking elsewhere
for the cause of my medical problems?
John Richards
| |
| Marnia He Sapa 2005-06-21, 10:48 pm |
| First, see your doc. There are many, many diseases and medical conditions
which display high symptom overlap. CFS/ME isn't so diagnosed entirely by
symptom set, but by excluding other possibilities, many of which,
thankfully, have tests. This is important. You don't want to have an
undiagnosed something-treatable, or even something-untreatable. You want a
clear diagnosis. Also, check out your environment. I've discovered that
mold in the flooring, invisible to the naked eye, produces some of the same
symptoms of CFS, including poor sleep, poor cognition, general tiredness
(though not the core fatigue of CFS) and of course congestion (which is
common in CFS/ME due to all the respiratory infections). Also, if you were
forced into early retirement, you may be experiencing some grief, all the
stages that go with that including anger and depression. That won't be
helping, whatever the rest of your situation may be. And it's something
you can do something about. So, you've got a bit of an exploration to
do. Hope this helps, best of luck--Marnia
At 04:48 PM 6/21/05 -0700, you wrote:
>This is my first post here, so bear with me if I'm making mistakes
>or violating some rules.
>
>I've been bothered by severe fatigue for some six years now,
>and am wondering if it could be CFS. Looking at the official list
>of definitive criteria, in order to be diagnosed the patient must
>have at least four of the eight listed symptoms (besides fatigue).
>Of those, I only have two:
>
>Impaired memory/poor concentration
>Unrefreshing sleep
>
>However, when I look at the longer list of typical CFS symptoms,
>I see several others that I have:
>
>Muscle weakness
>Mental depression (not helped by SSRI medication)
>Intolerance to bright lights
>Intolerance to loud sounds
>Irritable bowel syndrome (diarrhea)
>Joint stiffness (mostly in he morning)
>Nocturia
>
>If it matters, I am a 61 year old male, forced into early retirement.
>
>So, my question is, do I have CFS or should I be looking elsewhere
>for the cause of my medical problems?
>
>John Richards
| |
| bobbie sellers 2005-06-21, 10:48 pm |
| Hi Marnia He Sapa & John Richards, on 06/22/05, you wrote:
MS> First, see your doc. There are many, many diseases and
MS> medical conditions which display high symptom overlap. CFS/ME
MS> isn't so diagnosed entirely by symptom set, but by excluding
MS> other possibilities, many of which, thankfully, have tests.
MS> This is important. You don't want to have an undiagnosed
MS> something-treatable, or even something-untreatable. You want
MS> a clear diagnosis. Also, check out your environment. I've
MS> discovered that mold in the flooring, invisible to the naked
MS> eye, produces some of the same symptoms of CFS, including
MS> poor sleep, poor cognition, general tiredness (though not the
MS> core fatigue of CFS) and of course congestion (which is
MS> common in CFS/ME due to all the respiratory infections).
MS> Also, if you were forced into early retirement, you may be
MS> experiencing some grief, all the stages that go with that
MS> including anger and depression. That won't be helping,
MS> whatever the rest of your situation may be. And it's
MS> something you can do something about. So, you've got a bit of
MS> an exploration to do. Hope this helps, best of luck--Marnia
MS> At 04:48 PM 6/21/05 -0700, you wrote:
MS>> This is my first post here, so bear with me if I'm making
MS>> mistakes or violating some rules.
MS>> I've been bothered by severe fatigue for some six years now,
MS>> and am wondering if it could be CFS. Looking at the official
MS>> list of definitive criteria, in order to be diagnosed the
MS>> patient must have at least four of the eight listed symptoms
MS>> (besides fatigue). Of those, I only have two:
MS>> Impaired memory/poor concentration
MS>> Unrefreshing sleep
MS>> However, when I look at the longer list of typical CFS
MS>> symptoms, I see several others that I have:
MS>> Muscle weakness
MS>> Mental depression (not helped by SSRI medication)
MS>> Intolerance to bright lights
MS>> Intolerance to loud sounds
MS>> Irritable bowel syndrome (diarrhea)
MS>> Joint stiffness (mostly in he morning)
MS>> Nocturia
MS>> If it matters, I am a 61 year old male, forced into early
MS>> retirement.
MS>> So, my question is, do I have CFS or should I be looking
MS>> elsewhere for the cause of my medical problems?
MS>> John Richards
Marnia gives good advice though he top posts.
John you mention the bowel problems. You need to be
checked for food sensitivities. I had severe bowel
problems due to newly developed food sensitivities basically
due to wheat, yeast and bovine dairy. I excluded these
from my diet and can indulge occasionally with care. If
I over indulge I have certain problems that a yeast suppressant
drink deals with.
I have Muscle weakness now though it took years to
develope. But I have sustained two fractures to my right
arm over the years and neither time was able to fully
regain my strength.
Intolerance to stimuli; I have that too and so do
lots of other folks with cfids. If I forget my naproxen
sodium twice a day I have lot of joint and muscle pain.
But as Marnia says do your level best to get a clear
diagnosis from your local doctors - I never was able to
get it but as a real illness from my psychiatrist who
was sure it was a physical complaint because he knew my
active lifestyle from when I was well.
I find that if I don't do as much I as I think I can
I can get by a lot better than if I push myself to the
edges of my endurance. After walking about 25 blocks
on Sunday I had to take Monday off after I did a couple
of loads of laundry.
I have found things that help me and will share them
if you ask but the most important thing is for you to find
a good diagnostician that will consider every possiblity.
later
Bobbie Sellers
--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com
Do not taunt the Happy Fun Ball. If Happy Fun Ball starts to
smoke, run away and take cover.
| |
| John Richards 2005-06-22, 8:48 am |
| Marnia He Sapa wrote:
> First, see your doc. There are many, many diseases and medical conditions
> which display high symptom overlap. CFS/ME isn't so diagnosed entirely by
> symptom set, but by excluding other possibilities, many of which,
> thankfully, have tests. This is important. You don't want to have an
> undiagnosed something-treatable, or even something-untreatable. You want a
> clear diagnosis.
My doc gave me a general checkup and a battery of blood/urine tests,
all of which came back normal. He doesn't seem interested in ordering
further diagnostic tests. Incidentally, I'm with a HMO health plan.
The only meds I take are two for hypertension: hydrochlorothiazide (a
diuretic) and atenolol (a beta blocker). Their known side effects should not
be aggravating/causing my CFS symptoms.
> Also, check out your environment. I've discovered that
> mold in the flooring, invisible to the naked eye, produces some of the same
> symptoms of CFS, including poor sleep, poor cognition, general tiredness
> (though not the core fatigue of CFS) and of course congestion (which is
> common in CFS/ME due to all the respiratory infections).
I live in a wood frame house, no cement slab floors. I seldom
experience congestion or respiratory infections. As far as I know,
I have no allergies.
> Also, if you were
> forced into early retirement, you may be experiencing some grief, all the
> stages that go with that including anger and depression. That won't be
> helping, whatever the rest of your situation may be.
That may indeed be a factor. The feelings of fatigue didn't start until
after the forced early retirement, but it may be a coincidence.
> And it's something
> you can do something about. So, you've got a bit of an exploration to
> do. Hope this helps, best of luck--Marnia
Thanks for your input.
--
John Richards
| |
| John Richards 2005-06-22, 8:48 am |
| bobbie sellers wrote:
>
> John you mention the bowel problems. You need to be
> checked for food sensitivities. I had severe bowel
> problems due to newly developed food sensitivities basically
> due to wheat, yeast and bovine dairy. I excluded these
> from my diet and can indulge occasionally with care. If
> I over indulge I have certain problems that a yeast suppressant
> drink deals with.
I'm beginning to suspect a newly developed lactose intolerance.
Several nights in a row I had a bad reaction to eating icecream.
I'll have to get it checked out.
> I have Muscle weakness now though it took years to
> develope. But I have sustained two fractures to my right
> arm over the years and neither time was able to fully
> regain my strength.
No fractures so far. But my muscles feel constantly exhausted,
especially the leg muscles.
> Intolerance to stimuli; I have that too and so do
> lots of other folks with cfids. If I forget my naproxen
> sodium twice a day I have lot of joint and muscle pain.
No joint/muscle pain to speak of, except:
a) I used to have pain in both elbows which my doc diagnosed
as tennis elbow. Glucosamine/chondroitin keeps that pain away.
b) I recently developed pain in the finger joints of one hand.
My doc says it's 'trigger finger.' So far the pain hasn't been bad
enough to take NSAIDs for it.
c) My hip joints always seem to have a dull ache, but it feels
more like tiredness than pain.
> But as Marnia says do your level best to get a clear
> diagnosis from your local doctors - I never was able to
> get it but as a real illness from my psychiatrist who
> was sure it was a physical complaint because he knew my
> active lifestyle from when I was well.
>
> I find that if I don't do as much I as I think I can
> I can get by a lot better than if I push myself to the
> edges of my endurance. After walking about 25 blocks
> on Sunday I had to take Monday off after I did a couple
> of loads of laundry.
>
> I have found things that help me and will share them
> if you ask but the most important thing is for you to find
> a good diagnostician that will consider every possiblity.
Thanks for your advice.
Unfortunately my HMO doctor will only agree to order basic tests,
and I'm not wealthy enough to pay for more elaborate testing
from my own funds.
--
John Richards
| |
|
| John Richards wrote:
The only meds I take are two for hypertension: hydrochlorothiazide (a
diuretic) and atenolol (a beta blocker). Their known side effects should =
not
be aggravating/causing my CFS symptoms.
Tony commented
I've taken both of the above medications. Both of them caused me =
increased fatigue. YMMV.
| |
| jan jones 2005-06-22, 8:48 am |
| I am a slient member of this list. I have CFIDS. I live in Michigan. I read
the list. It helps me. I feel like I know some of you. My husband is now
diagnosed with stage 4 esoghpus cancer. We are having a widespread prayer
tonight for him at 8 p.m. to 9 p.m. Eastern Time. Please join us then in
praying for jeff Jones. I do not have more time to writen now. I will repot
in later we go to the cancer center today to see teh doctors there to see
if they can offer anything more than the oncologist we saw yesterday. GThey
only offer chemo for him. He is not a surgery or radiation candidate it has
spread too much. Plese help by praying.
Michigan Jan
----- Original Message -----
From: "John Richards" <johnrich@gmail.com>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Tuesday, June 21, 2005 11:50 PM
Subject: Re: MED: CFS diagnosis?
> Marnia He Sapa wrote:
>
> My doc gave me a general checkup and a battery of blood/urine tests,
> all of which came back normal. He doesn't seem interested in ordering
> further diagnostic tests. Incidentally, I'm with a HMO health plan.
>
> The only meds I take are two for hypertension: hydrochlorothiazide (a
> diuretic) and atenolol (a beta blocker). Their known side effects should
> not
> be aggravating/causing my CFS symptoms.
>
>
> I live in a wood frame house, no cement slab floors. I seldom
> experience congestion or respiratory infections. As far as I know,
> I have no allergies.
>
>
> That may indeed be a factor. The feelings of fatigue didn't start until
> after the forced early retirement, but it may be a coincidence.
>
>
> Thanks for your input.
>
> --
>
> John Richards
>
| |
| dmv3@earthlink.net 2005-06-22, 5:48 pm |
| Count our church in for praying for you all tonight at our service.
Dawn
> [Original Message]
> From: jan jones <Writeplace@comcast.net>
> To: <CFS-L@MAELSTROM.STJOHNS.EDU>
> Date: 6/22/2005 7:16:16 AM
> Subject: Re: MED: CFS diagnosis?
>
> I am a slient member of this list. I have CFIDS. I live in Michigan. I
read
> the list. It helps me. I feel like I know some of you. My husband is now
> diagnosed with stage 4 esoghpus cancer. We are having a widespread prayer
> tonight for him at 8 p.m. to 9 p.m. Eastern Time. Please join us then in
> praying for jeff Jones. I do not have more time to writen now. I will
repot
> in later we go to the cancer center today to see teh doctors there to see
> if they can offer anything more than the oncologist we saw yesterday.
GThey
> only offer chemo for him. He is not a surgery or radiation candidate it
has[vbcol=seagreen]
> spread too much. Plese help by praying.
>
> Michigan Jan
> ----- Original Message -----
> From: "John Richards" <johnrich@gmail.com>
> Newsgroups: alt.med.cfs
> To: <CFS-L@MAELSTROM.STJOHNS.EDU>
> Sent: Tuesday, June 21, 2005 11:50 PM
> Subject: Re: MED: CFS diagnosis?
>
>
want[vbcol=seagreen]
tiredness[vbcol=seagreen]
the[vbcol=seagreen]
| |
| dmv3@earthlink.net 2005-06-22, 5:48 pm |
| John,
I would agree to approach the food sensitivities issue also. When I first
came down with CFIDS, it was the bowel problems and faitgue that led me to
seek an allergist who did extensive food, environmental, and indoor/outdoor
testing and found out that I was allergic to just about everything, some
mildly, others severely. Years ago, I was able to eat
Breyers natural vanilla, but now I can't even eat that because I have
reactions to either the dairy or the vanilla. When I stay on a no sugar,
no wheat, no yeast, no corn, organic diet, I see some improvement in my
energy levels and brain fog.
Your HMO should cover these allergy tests.
Hope this helps!
Dawn
> [Original Message]
> From: John Richards <johnrich@gmail.com>
> To: <CFS-L@MAELSTROM.STJOHNS.EDU>
> Date: 6/22/2005 4:11:09 AM
> Subject: Re: MED: CFS diagnosis?
>
> bobbie sellers wrote:
>
> I'm beginning to suspect a newly developed lactose intolerance.
> Several nights in a row I had a bad reaction to eating icecream.
> I'll have to get it checked out.
>
>
> No fractures so far. But my muscles feel constantly exhausted,
> especially the leg muscles.
>
>
> No joint/muscle pain to speak of, except:
> a) I used to have pain in both elbows which my doc diagnosed
> as tennis elbow. Glucosamine/chondroitin keeps that pain away.
> b) I recently developed pain in the finger joints of one hand.
> My doc says it's 'trigger finger.' So far the pain hasn't been bad
> enough to take NSAIDs for it.
> c) My hip joints always seem to have a dull ache, but it feels
> more like tiredness than pain.
>
>
> Thanks for your advice.
> Unfortunately my HMO doctor will only agree to order basic tests,
> and I'm not wealthy enough to pay for more elaborate testing
> from my own funds.
>
> --
> John Richards
| |
| John Richards 2005-06-22, 5:48 pm |
| Tony wrote:
> John Richards wrote:
>
> The only meds I take are two for hypertension: hydrochlorothiazide (a
> diuretic) and atenolol (a beta blocker). Their known side effects should not
> be aggravating/causing my CFS symptoms.
> Tony commented
> I've taken both of the above medications. Both of them caused me increased fatigue.
> YMMV.
Interesting. Did you switch to some other medication for your hypertension?
I've taken the hydrochlorothizide for about 10 years, and the atenolol for
only two months. So if anything, I'd suspect the first med.
--
John Richards
| |
| David Guy Fetzer 2005-06-22, 5:48 pm |
| Jan:
Will spread this to my church group tonight. Many blessings to you and Jeff.
Cheers,
Dave
----- Original Message -----
From: "jan jones" <Writeplace@comcast.net>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Wednesday, June 22, 2005 6:16 AM
Subject: Re: MED: CFS diagnosis?
>I am a slient member of this list. I have CFIDS. I live in Michigan. I read
> the list. It helps me. I feel like I know some of you. My husband is now
> diagnosed with stage 4 esoghpus cancer. We are having a widespread prayer
> tonight for him at 8 p.m. to 9 p.m. Eastern Time. Please join us then in
> praying for jeff Jones. I do not have more time to writen now. I will
> repot
> in later we go to the cancer center today to see teh doctors there to see
> if they can offer anything more than the oncologist we saw yesterday.
> GThey
> only offer chemo for him. He is not a surgery or radiation candidate it
> has
> spread too much. Plese help by praying.
>
> Michigan Jan
> ----- Original Message -----
> From: "John Richards" <johnrich@gmail.com>
> Newsgroups: alt.med.cfs
> To: <CFS-L@MAELSTROM.STJOHNS.EDU>
> Sent: Tuesday, June 21, 2005 11:50 PM
> Subject: Re: MED: CFS diagnosis?
>
>
>
| |
|
| ----- Original Message -----=20
From: John Richards=20
Newsgroups: alt.med.cfs
To: CFS-L@MAELSTROM.STJOHNS.EDU=20
Sent: Wednesday, June 22, 2005 10:05 AM
Subject: Re: MED: CFS diagnosis?
Tony wrote:
> John Richards wrote:
>
> The only meds I take are two for hypertension: hydrochlorothiazide =
(a
> diuretic) and atenolol (a beta blocker). Their known side effects =
should not
> be aggravating/causing my CFS symptoms.
> Tony commented
> I've taken both of the above medications. Both of them caused me =
increased fatigue.
> YMMV.
Interesting. Did you switch to some other medication for your =
hypertension?
I've taken the hydrochlorothizide for about 10 years, and the atenolol =
for
only two months. So if anything, I'd suspect the first med.
--
John Richards
John,
I switched to long acting Inderal. Inderal does cause fatigue, but it =
is the best blood pressure med I could find and I've tried many =
including calcium channel blockers, ACE inhibitors, potassium sparing =
diuretics, etc.
| |
| John Richards 2005-06-22, 5:48 pm |
| I'm familiar with the idea of food allergies causing gastro-intestinal
upsets and skin rashes, but I was not aware that they could also
be the cause of this unrelenting fatigue that's been plagueing me
for several years.
I will have to research this further. Do you have a web URL where
I could get a food diet plan that eliminates all the possible problem
sources?
--
John Richards
dmv3@earthlink.net wrote:
> John,
> I would agree to approach the food sensitivities issue also. When I first
> came down with CFIDS, it was the bowel problems and faitgue that led me to
> seek an allergist who did extensive food, environmental, and indoor/outdoor
> testing and found out that I was allergic to just about everything, some
> mildly, others severely. Years ago, I was able to eat
> Breyers natural vanilla, but now I can't even eat that because I have
> reactions to either the dairy or the vanilla. When I stay on a no sugar,
> no wheat, no yeast, no corn, organic diet, I see some improvement in my
> energy levels and brain fog.
> Your HMO should cover these allergy tests.
> Hope this helps!
>
> Dawn
| |
| Daniel Prince 2005-06-22, 5:48 pm |
| On Tue, 21 Jun 2005 16:48:18 -0700, John Richards
<johnrich@gmail.com> wrote:
>I've been bothered by severe fatigue for some six years now,
>and am wondering if it could be CFS.
What happens when you exercise?
--
I have found several good doctors. I just have not been able
to figure out how to climb through my TV screen to go to them.
| |
| Marnia He Sapa 2005-06-22, 10:47 pm |
| LOL.  Everybody's basic tests usually come back within the normal
ranges. As an internist once told me, it's pretty useless because they
don't have your baseline tests -- the example he gave was of being lost in
the woods, whipping out your compass and finding north (basic
tests). Great. Now you know where north is, but you still don't know
where camp is. Dawn suggests allergy tests. I suggest you ask for
something called (at least twelve years ago it was called) a "fatigue
panel" which tests for titers of several viruses. virii. whatever. One
of which is Epstein-Barr. Now, we know, or think we know, EB is not the
cause of CFS/ME, but many docs, including my own, see a high titer count as
evidence that your immune system is under major assault, and coupled with
the other symptoms, may even indicate it is compromised. High EB titers
(two different ways to interpret for SSA) are still regarded as clinical
evidence of disabling condition by SSA. I've forgotten the exact
numbers. Anyway, two more sets of tests your HMO really ought to be
willing to spring for. Also, ask for tests for thyroid. Speak frankly
with your doctor about what else this might be. And finally, for dairy
consumption, I was always lactose intolerant: those lactase tablets are
little miracles. I get mine from Bronson Labs (no connection to me other
than I buy from them). Oh -- if you are experiencing joint pain, get
checked out for arthritis. Sorry to suggest it, but you may be working
with more than one medical "thing" that's awry. best, Marnia
>My doc gave me a general checkup and a battery of blood/urine tests,
>all of which came back normal. He doesn't seem interested in ordering
>further diagnostic tests. Incidentally, I'm with a HMO health plan.
| |
| Lea V. Usin 2005-06-23, 8:50 am |
| Marnia He Sapa (hesapa@my180.net) writes:
> checked out for arthritis. Sorry to suggest it, but you may be working
> with more than one medical "thing" that's awry. best, Marnia
>
Another, often undiagnosed, factor to consider is whether or not you might
have sleep apnea. Do you know if you snore? Do you sometimes wake up
gasping for air? Do you wake up with a headache? Sleep apnea could exist
even without these symptoms, but they make it more likely. Most people
with sleep apnea don't even know they're waking up because it's so brief
and they immediately fall asleep again. However, if this is happening to
you many times a night, you end up very, very tired. Of course one can
have sleep apnea and CFS.
I've read estimates that about 80% of sleep apnea cases are undiagnosed,
so it bears checking out. Many GPs are woefully ignorant of its existence.
My sleep doctor says he's seen many cases of sleep apnea and other sleep
disorders misdiagnosed as CFS and fibromyalgia. And even if you have CFS,
your doctor should not give up looking for other causes for all or some of
your symptoms.
Cheers, Lea
--
Lea V. Usin
ac809@ncf.ca
| |
| John Richards 2005-06-23, 5:49 pm |
| "Lea V. Usin" <ac809@FreeNet.Carleton.CA> wrote:
>
> Another, often undiagnosed, factor to consider is whether or not you might
> have sleep apnea. Do you know if you snore?
My wife says I do if I sleep on my back, but I've learned to sleep mostly
on my stomach. The snoring predates the CFS symptoms.
> Do you sometimes wake up
> gasping for air? Do you wake up with a headache?
No and no. I never have headaches.
> Sleep apnea could exist
> even without these symptoms, but they make it more likely. Most people
> with sleep apnea don't even know they're waking up because it's so brief
> and they immediately fall asleep again. However, if this is happening to
> you many times a night, you end up very, very tired. Of course one can
> have sleep apnea and CFS.
When I get up in the morning, I feel more tired than when I went to bed
the night before. I definitely have the "unrefreshing sleep" symptom.
However, I do not feel sleepy during the day. After a few cups of coffee,
some of the tiredness dissipates and I can do normal household chores
(vacuuming, dishes, laundry, etc.).
> I've read estimates that about 80% of sleep apnea cases are undiagnosed,
> so it bears checking out. Many GPs are woefully ignorant of its existence.
> My sleep doctor says he's seen many cases of sleep apnea and other sleep
> disorders misdiagnosed as CFS and fibromyalgia. And even if you have CFS,
> your doctor should not give up looking for other causes for all or some of
> your symptoms.
I'll keep that in mind. Thanks for your input.
John Richards
| |
| John Richards 2005-06-23, 5:49 pm |
| "Daniel Prince" <neutrino1@comcast.net> wrote:
> What happens when you exercise?
Interesting question. From my research I know that a hallmark symptom
of CFS is that the fatigue is worsened by exertion.
I've been a jogging for exercise all my life, typically running for 30
minutes, four days per week. The last few years I've had difficulty
starting a jogging session because it feels like concrete weights are
tied to my legs. However, after a few minutes of slow jogging the
'heavy legs' feeling dissipates, and I have no difficulty completing the
remainer of the 30 minute run. Afterwards I feel a normal degree of
tiredness, not exhaustion, and 24 hours later I can repeat the exercise
without any lingering effects from the previous session.
Would this rule out CFS, or could I still have a mild form of it?
I seem to have developed some sort of mental block against starting
anything that involves physical exertion, often making excuses as to
why I can't do it. I haven't exercised for some six months now, partly
because of injuries to my foot, knee, and lower back.
John Richards
| |
| John Richards 2005-06-23, 5:49 pm |
| Marnia He Sapa wrote:
> LOL. Everybody's basic tests usually come back within the normal
> ranges. As an internist once told me, it's pretty useless because they
> don't have your baseline tests -- the example he gave was of being lost in
> the woods, whipping out your compass and finding north (basic
> tests). Great. Now you know where north is, but you still don't know
> where camp is.
I would not consider blood tests to be useless.
Most have a well-defined range of acceptable readings, so anything
outside of that range would be cause for concern. For example:
Sodium 133-145 mEq/L
BUN (liver test) 8-20 mg/dL
Both of those were a little high for me on a blood test I took about a
year ago, and my doc said it was probably due to dehydration, so he
advised me to drink more water. I think he was right. I had gotten into
the habit of drinking a lot of coffee, up to 50% of my daily fluid intake.
So I cut down on the coffee and drank more water, which made me
feel somewhat better.
> Dawn suggests allergy tests. I suggest you ask for
> something called (at least twelve years ago it was called) a "fatigue
> panel" which tests for titers of several viruses. virii. whatever. One
> of which is Epstein-Barr. Now, we know, or think we know, EB is not the
> cause of CFS/ME, but many docs, including my own, see a high titer count as
> evidence that your immune system is under major assault, and coupled with
> the other symptoms, may even indicate it is compromised.
So could a person have a high EB titer even if he has never had
mononucleosis?
--
John Richards
| |
| bobbie sellers 2005-06-23, 5:49 pm |
| Hi John Richards, on 06/23/05, you wrote:
JR> "Daniel Prince" <neutrino1@comcast.net> wrote:
JR>> What happens when you exercise?
JR> Interesting question. From my research I know that a hallmark
JR> symptom of CFS is that the fatigue is worsened by exertion.
JR> I've been a jogging for exercise all my life, typically
JR> running for 30 minutes, four days per week. The last few
JR> years I've had difficulty starting a jogging session because
JR> it feels like concrete weights are tied to my legs. However,
JR> after a few minutes of slow jogging the 'heavy legs' feeling
JR> dissipates, and I have no difficulty completing the remainer
JR> of the 30 minute run. Afterwards I feel a normal degree of
JR> tiredness, not exhaustion, and 24 hours later I can repeat
JR> the exercise without any lingering effects from the previous
JR> session.
It would rule out the form of cfids I have at least. I can
handle day one but day two is problematic, day three I am asking
for trouble and day four I may spend indoors all day feeling
ill at some level or another. More exercise the more ill I
feel 24 hours later.
I took a stress test for cardiac evaluation and felt ok
as long as I was moving but it took me two weeks or more to
get over it.
JR> Would this rule out CFS, or could I still have a mild form of
JR> it? I seem to have developed some sort of mental block
JR> against starting anything that involves physical exertion,
JR> often making excuses as to why I can't do it. I haven't
JR> exercised for some six months now, partly because of injuries
JR> to my foot, knee, and lower back.
JR> John Richards
Start by walking 30 minutes a day. If you are prone to
injuries you might want to do stretching exercises after a
short walk and before the 30 minute walk. If you have a
track handy you might want to use it rather than the rough
sidewalks I find on city streets with traffic interrupting the
flow of exercise.
I find the total amount of exertion involved in daily
activities to be very limiting. That means that I have
to count the time I spend just standing up or riding the
bus.
later
Bobbie Sellers
--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com
Some people hope to achieve immortality through their works
or their children. I would prefer to achieve it by not dying.
-- Woody Allen
| |
| John Richards 2005-06-23, 5:49 pm |
| bobbie sellers wrote:
> Hi John Richards, on 06/23/05, you wrote:
>
>
>
> Start by walking 30 minutes a day. If you are prone to
> injuries you might want to do stretching exercises after a
> short walk and before the 30 minute walk. If you have a
> track handy you might want to use it rather than the rough
> sidewalks I find on city streets with traffic interrupting the
> flow of exercise.
My injuries were not caused by running but by other events
(lifting heavy furniture, falling off a ladder, etc.).
I agree that I should be doing some type of exercise, even
if it is only walking, although I find walking to be so
non-challenging that it is boring to me.
--
John Richards
| |
| Tami Halphen 2005-06-27, 9:18 am |
| Most people have been infected with EB - I think I read 95% of Americans, i=
f=20
you get it when you are very young, you probably didn't notice it - you=20
experience something like a cold. If you get it as a teenager, you get=20
mononucleosis.
I would imagine anyone who had been infected in either way could get CFS.=
=20
On 6/23/05, John Richards <johnrich@gmail.com> wrote:=20
>=20
>=20
> So could a person have a high EB titer even if he has never had
> mononucleosis?
>=20
> --
> John Richards
>=20
--=20
Tami Halphen
A Blue Activist in a Red State -http://blueactivist.blogspot.com
| |
| Lea V. Usin 2005-06-27, 9:18 am |
| John Richards (johnrich@gmail.com) writes:
> "Lea V. Usin" <ac809@FreeNet.Carleton.CA> wrote:
>
> My wife says I do if I sleep on my back, but I've learned to sleep mostly
> on my stomach. The snoring predates the CFS symptoms.
This is a typical way for someone to cope with most of the apnea-causing
obstruction. It was certainly my way for years until finally I needed a
CPAP. So, I would think this would be useful to bring up with y our
doctor, or educate him about. OTOH, my CFS symptoms arrived after I had
been diagnosed with OSA. The combination of the two would be worse than
either one alone.
> When I get up in the morning, I feel more tired than when I went to bed
> the night before. I definitely have the "unrefreshing sleep" symptom.
> However, I do not feel sleepy during the day. After a few cups of coffee,
> some of the tiredness dissipates and I can do normal household chores
> (vacuuming, dishes, laundry, etc.).
Would your wife be willing to lend you to me for a bit? The only work
done around here is by the Roomba and sometimes even it can't quite cope.
In the case of sleep apnea, the unrefreshing sleep is often the result of
the fact that one is getting little or no stage 3 and 4 sleep. You start
to go down, through one, then two, and then an apneic event wakes you up
and you start the whole process all over again. Periodic Limb Movement
Disorder can have the same effect (and can be a precursor to apnea). Not
only is it just unrefreshing, but the absence of deep sleep is also
thought to interfere with the body's ability to repair itself and
strenghthen its immune system, making one prey to deteriorating health in
every aspect.
Cheers, Lea
--
Lea V. Usin
ac809@ncf.ca
| |
| John Richards 2005-06-27, 9:18 am |
| "Tami Halphen" cannabis.flower@gmail.com wrote:
> Most people have been infected with EB - I think I read 95% of Americans, if
> you get it when you are very young, you probably didn't notice it - you
> experience something like a cold. If you get it as a teenager, you get
> mononucleosis.
> I would imagine anyone who had been infected in either way could get CFS.
If that is true (nearly everyone infected with EB) wouldn't nearly everyone
test with a high EB titer? And if so, wouldn't that be a meaningless result?
Also, is EB infection a likely (or necessary) precursor to CFS?
John Richards
| |
| John Richards 2005-06-27, 9:18 am |
| "Lea V. Usin" <ac809@FreeNet.Carleton.CA> wrote:
> In the case of sleep apnea, the unrefreshing sleep is often the result of
> the fact that one is getting little or no stage 3 and 4 sleep. You start
> to go down, through one, then two, and then an apneic event wakes you up
> and you start the whole process all over again. Periodic Limb Movement
> Disorder can have the same effect (and can be a precursor to apnea). Not
> only is it just unrefreshing, but the absence of deep sleep is also
> thought to interfere with the body's ability to repair itself and
> strenghthen its immune system, making one prey to deteriorating health in
> every aspect.
Somehow I never assumed I could have sleep apnea, because
a) I don't get sleepy during the day, and
b) I've never woke up in the night, gasping for breath, and
c) Neither has my wife (who sleeps next to me) observed anything unusual.
--
John Richards
| |
| Tami Halphen 2005-06-27, 9:18 am |
| No, here is information from the CDC.
http://www.cdc.gov/ncidod/diseases/ebv.htm
It hides in your body and reactivates when your immune system is down.
As far as being a precurser to CFS, they don't know, it might be in some=20
people but they don't have the evidence. CFS is basically a diagnosis of "w=
e=20
don't know - we've ruled just about everything else out".
On 6/23/05, John Richards <johnrich@gmail.com> wrote:
>=20
> "Tami Halphen" cannabis.flower@gmail.com wrote:
> Americans, if
> CFS.
>=20
> If that is true (nearly everyone infected with EB) wouldn't nearly=20
> everyone
> test with a high EB titer? And if so, wouldn't that be a meaningless=20
> result?
>=20
> Also, is EB infection a likely (or necessary) precursor to CFS?
>=20
> John Richards
>=20
--=20
Tami Halphen
A Blue Activist in a Red State -http://blueactivist.blogspot.com
| |
| Daniel Prince 2005-06-27, 9:18 am |
| On Tue, 21 Jun 2005 16:48:18 -0700, John Richards
<johnrich@gmail.com> wrote:
>I've been bothered by severe fatigue for some six years now,
>and am wondering if it could be CFS.
Do you find it difficult to stand in one place for several minutes?
--
I have found several good doctors. I just have not been able
to figure out how to climb through my TV screen to go to them.
| |
| John Richards 2005-06-27, 9:18 am |
| "Daniel Prince" neutrino1@comcast.net wrote:
> On Tue, 21 Jun 2005 16:48:18 -0700, John Richards
> <johnrich@gmail.com> wrote:
>
>
> Do you find it difficult to stand in one place for several minutes?
Yeah, my legs feel a bit rubbery, and after a while my hip joints
start aching. By sheer will power I can accompany my wife on
her three hour long shopping mall excursions, but it's real misery.
John Richards
| |
| bobbie sellers 2005-06-27, 9:18 am |
| Hi John Richards, on 06/25/05, you wrote:
JR> "Daniel Prince" neutrino1@comcast.net wrote:
JR>> On Tue, 21 Jun 2005 16:48:18 -0700, John Richards
JR>> <johnrich@gmail.com> wrote:
JR>> I've been bothered by severe fatigue for some six years
JR>> now, and am wondering if it could be CFS.
JR>> Do you find it difficult to stand in one place for several
JR>> minutes?
JR> Yeah, my legs feel a bit rubbery, and after a while my hip
JR> joints start aching. By sheer will power I can accompany my
JR> wife on her three hour long shopping mall excursions, but
JR> it's real misery.
JR> John Richards
Back in 2000 I started to get that rubbery leg felling which
frightened me. Shortly after that due to the advocacy of list
members I started using Undenatured Whey Protein on a daily
basis and the rubbery legs went away and my herpes came under
better control.
Lots more information about this supplement available by
googling on this newsgroup, alt.med.cfs or if you ask I will
send stuff to you privately or to the list.
later
bliss
--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com
I think that God in creating man somewhat overestimated his
ability. -- Oscar Wilde
| |
| e_j_anderson@juno.com 2005-06-27, 9:18 am |
| As far as I knew I didn't have allergies, either. I suffered for years until I went on an elimination diet. I wouldn't totally trust allergy testing, either. It depends on on the test and which part of your immune system is reacting to an individual aller
gen. It would be easy to miss important reactions. An elimination diet costs nothing, except effort.
I left behind a lot of pain and brain fog when I stopped eating wheat, corn, dairy, bananas, melons, and several other foods that gave me reactions. I am able to eat some of those things now without a problem, but it was a great help eliminating them at
the time.
The things you eat most often are the most likely candidates. A person can test them by eliminating them one at a time, then adding them back into the diet and watching for reactions. Or one can go on a "cave man diet" and eliminate most likely allergies,
then gradually adding back in all suspect foods and watching for reactions. There are instructions for doing this in Dr. Crook's book, The Yeast Connection, as I recall.
I never had formal allergy testing. I have no health insurance. But I think the do-it-yourself way is best, anyway.
Eric
___________________________________________________________________
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| |
| e_j_anderson@juno.com 2005-06-27, 9:18 am |
| John Richards wrote:
I've been a jogging for exercise all my life, typically running for 30
minutes, four days per week. The last few years I've had difficulty
starting a jogging session because it feels like concrete weights are
tied to my legs. However, after a few minutes of slow jogging the
'heavy legs' feeling dissipates, and I have no difficulty completing the
remainer of the 30 minute run. Afterwards I feel a normal degree of
tiredness, not exhaustion, and 24 hours later I can repeat the exercise
without any lingering effects from the previous session.
-----
Eric Anderson replies:
Interesting. This is a lot like how I felt back before I had severe CFS. At that time I had, unbeknownst to me, a great deal of undiagnosed food allergies. The exercise actually helped, although it felt like hell in the beginning. After I developed severe
CFS, I could not exercise at all except for short walks and non-aerobic exercise.
CFS is not one thing -- it is probably a combination of different conditions. A large percentage of people with CFS have post-exertional fatigue. Even the brain suffers. Exercise should increase circulation in the brain, but SPECT scans show that in peopl
e with post-exertional fatigue as a major part of their CFS, their brain circulation is less after exercise, and even worse a day later. And of course they would have an increase in fatigue as well.
Probably you don't fall into this category. You might still have CFS, but without post-exertional fatigue, it makes it less likely. You could still have some immune disorder that could cause several of the other symptoms that are hallmarks of CFS.
Eric
___________________________________________________________________
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Unlimited Internet Access with 250MB of Email Storage.
Visit http://www.juno.com/bestoffer to sign up today!
| |
| e_j_anderson@juno.com 2005-06-27, 9:18 am |
| John Richards wrote:
If that is true (nearly everyone infected with EB) wouldn't nearly everyone
test with a high EB titer? And if so, wouldn't that be a meaningless result?
Also, is EB infection a likely (or necessary) precursor to CFS?
-----
Eric Anderson replies:
Most people show evidence of infection to EB. Some may have had no symptoms at the time they were exposed, and others might have had a slight cold. A few had mononucleosis. Normally, antibodies would remain in all of these groups at a low level.
HOWEVER, when the immune system is under stress or if it goes haywire like it seems to do in most people with CFS, those antibody levels may start to rise again. I'm not sure anyone really knows why. It may be the body inappropriately producing antibodies
, or it may be that the virus is reactivating after a long latency, and the body produces more antibodies to keep it suppressed.
Mind you, I am not advocating an EB antibody test. I personally think it would be of limited value in most cases. But I'm just explaining the logic behind it, and what the antibody levels mean. There are different antibodies to different proteins involved
in EB virus replication. The balance of these different antibodies, the relative levels of Early Antigen, Viral Capsid Antigen, and one other antigen I can't recall the name of, can indicate whether you have had a recent EB infection that has resolved, a
n infection that resolved itself long ago, or whether there is active replication.
Does that help? Yes, most of the population has been infected, but most would show a very low level of residual antibodies to the virus, because the immune system is keeping the virus suppressed and latent within your cells. Still, it is always there lurk
ing, and under certain conditions, it can come out and cause problems again.
Eric
___________________________________________________________________
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| |
| John Richards 2005-06-27, 9:18 am |
| <e_j_anderson@juno.com>
> Most people show evidence of infection to EB. Some may have had no symptoms at the time
> they were exposed, and others might have had a slight cold. A few had mononucleosis.
> Normally, antibodies would remain in all of these groups at a low level.
>
> HOWEVER, when the immune system is under stress or if it goes haywire like it seems to
> do in most people with CFS, those antibody levels may start to rise again. I'm not sure
> anyone really knows why. It may be the body inappropriately producing antibodies, or it
> may be that the virus is reactivating after a long latency, and the body produces more
> antibodies to keep it suppressed.
>
> Mind you, I am not advocating an EB antibody test. I personally think it would be of
> limited value in most cases. But I'm just explaining the logic behind it, and what the
> antibody levels mean. There are different antibodies to different proteins involved in
> EB virus replication. The balance of these different antibodies, the relative levels of
> Early Antigen, Viral Capsid Antigen, and one other antigen I can't recall the name of,
> can indicate whether you have had a recent EB infection that has resolved, an infection
> that resolved itself long ago, or whether there is active replication.
>
> Does that help? Yes, most of the population has been infected, but most would show a
> very low level of residual antibodies to the virus, because the immune system is
> keeping the virus suppressed and latent within your cells. Still, it is always there
> lurking, and under certain conditions, it can come out and cause problems again.
>
> Eric
Yes, your explanation about EB is very clear.
What still confuses me is whether a CFS diagnosis necessarily requires a
compromised immune system, or whether one could have a milder form that
presents with chronic fatigue only, with few other symptoms.
For example, when my wife has a cold, I never catch it.
John Richards
| |
| bobbie sellers 2005-06-27, 9:18 am |
| Hi John Richards, on 06/26/05, you wrote:
JR> <e_j_anderson@juno.com>
JR>> Most people show evidence of infection to EB. Some may have
JR>> had no symptoms at the time they were exposed, and others
JR>> might have had a slight cold. A few had mononucleosis.
JR>> Normally, antibodies would remain in all of these groups at
JR>> a low level.
JR>> HOWEVER, when the immune system is under stress or if it
JR>> goes haywire like it seems to
JR>> do in most people with CFS, those antibody levels may start
JR>> to rise again. I'm not sure
JR>> anyone really knows why. It may be the body inappropriately
JR>> producing antibodies, or it
JR>> may be that the virus is reactivating after a long latency,
JR>> and the body produces more
JR>> antibodies to keep it suppressed.
JR>> Mind you, I am not advocating an EB antibody test. I
JR>> personally think it would be of
JR>> limited value in most cases. But I'm just explaining the
JR>> logic behind it, and what the
JR>> antibody levels mean. There are different antibodies to
JR>> different proteins involved in
JR>> EB virus replication. The balance of these different
JR>> antibodies, the relative levels of
JR>> Early Antigen, Viral Capsid Antigen, and one other antigen
JR>> I can't recall the name of,
JR>> can indicate whether you have had a recent EB infection
JR>> that has resolved, an infection
JR>> that resolved itself long ago, or whether there is active
JR>> replication.
JR>> Does that help? Yes, most of the population has been
JR>> infected, but most would show a
JR>> very low level of residual antibodies to the virus, because
JR>> the immune system is
JR>> keeping the virus suppressed and latent within your cells.
JR>> Still, it is always there
JR>> lurking, and under certain conditions, it can come out and
JR>> cause problems again.
JR>> Eric
JR> Yes, your explanation about EB is very clear. What still
JR> confuses me is whether a CFS diagnosis necessarily requires a
JR> compromised immune system, or whether one could have a milder
JR> form that presents with chronic fatigue only, with few other
JR> symptoms. For example, when my wife has a cold, I never catch
JR> it.
JR> John Richards
First the cold you recognise is the reaction of the immune
system to the virual infection. If you never get sick it may
because your immune system is bogged down in dealing with
its own problems. You write "compromised" but the term is
actually "dysfunctional" either over or under-reacting to the
infection you may or may not be having.
Secondly since Chronic Fatigue (should be exhaustion) with
Immune Dysfunction Syndrome (cfids) is a syndrome not a
particular illness, some symptoms may be missing and you still
might be a victim of the syndrome. Since it is defined by
a made up definition of which symptoms are to be included and
was at least originally deliberately exclusive of several people
with various pre-existing condition it wasn't much help.
Dr.Lerner has identified two species of virus that can
infect the heart muscle and uses cardiac monitoring to detect
the infection and then uses the anti-body levels to determine
which species of virus is the culprit and thus which of
the anti-virual chemicals to employ. At the initial diagnostic
meeting a lot of lab work is done to rule out other conditions
as well. Sometimes the lab work determines a different condition
causing the person's cfids-like illness and Dr.Lerner will
attempt to treat that according to accepted protocols.
later
Bobbie Sellers
--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com
My powers are beyond your understanding!
*Heck even I don't remember what they were.*
| |
| Daniel Prince 2005-06-29, 5:48 pm |
| On Wed, 29 Jun 2005 10:10:50 GMT, you wrote:
>10,000 times the normal concentration of mercury in heart
>tissue is something that's hard to ignore or discount.
Not for western MDs. They have an unlimited ability to ignore
things that they do not want to believe. They could ignore a 100
megawatt light bulb blinking on and off a foot from their face.
They could ignore a quadrillion medical journal articles.
--
I have found several good doctors. I just have not been able
to figure out how to climb through my TV screen to go to them.
| |
| Lorene Calcagno 2005-07-05, 11:54 am |
| FoggiLori's reply to:
> My husband is now diagnosed with stage 4 esoghpus cancer.
I am so sorry to hear this. I had a cancerous growth my self and was
fortunate enough to have caught it in time, but I know it could show
up some other place at any time. You truly have my sympathy.
Please check out this site:
http://www.essiacinfo.org/free.html
This is an herbal cure for cancer developed by American Indians and
passed on to a nurse in Canada. She has had great results with it and
you can buy it at any nature store.
I personally know of one man who cured prostrate cancer with it and I
have bought the first box my self. It takes four boxes to complete
the regimen and it is a tea.
I live on the Mohawk reservation and they do wonderful things with
herbals. They have cured TB. The drug companies sure wanted that
recipe.
| |
|
| Most everyone I've ever known with cfs had the sore throat and swollen
glands in the beginning at least.
The symptoms you have can be from several other things. The main tip
off to me that it's likely NOT cfs is that you don't have a problem
with stanima and can do a 30 min workout without wiping out. Altho i
had cfs from the beginning I didn't know it for 9 yrs. I did know
that i'd had pesticide poisoning and got multiple chemical
sensitivity. That can cause all the symptoms that you mention
including fatigue...also from food allergies as was mentioned already.
Someone also mentioned sleep apnea. My SIL works at a sleep clinic
where my brother met her... he has sleep apnea. He had some of the
problems you mention but not all of them.
Most of the problems seem to be nervous system related. More and more
they are saying that cfs, fm and mcs are all neurologically based..as
is MS. There is a lot of overlap between these illnesses btw.
As I'm sure you've already found out the way the dx cfs is by
eliminating everything else first. Fun and games I know. BTW any
illness can be worsened by stress, even good stress. That you had to
take early retirement probably is bothering you too which is adding to
the situation.
Since there is not much that can be done about CFS or fm (tho i'd want
to make sure i didn't have something else) perhaps the thing to do is
to try a bit of experimenting to see if you can find something that
helps you. For instance keep a journal and see if anything you eat,
touch, smell, do -are around trigger any symptoms, make you feel
worse. That is one way to help figure out if something you're using
is bothering you. For food allergies they do a rotation diet.
Another thing which perhaps isn't so easy to do but is totally
harmless, actually is quite GOOD for anyone to do is get rid of all
the common chemical triggers in your home...ie anything with
fragrances, household cleansers, hair care products etc ...go with
simple, natural stuff that are fragrance free (not just unscented).
watch what you're using and in particular look at what is in your
bedroom... also watch for molds. You'd need to avoid them for a
month before you can tell if there's a difference. Even tho i have
cfs getting rid of all those things cut some symptoms...esp
brainfog... I try to tell all my cfs friends not to overlook this
aspect as most of us develop mcs over time if we didn't have it
already.
hope that helps
zona
>However, when I look at the longer list of typical CFS symptoms,
>I see several others that I have:
>
>Muscle weakness
>Mental depression (not helped by SSRI medication)
>Intolerance to bright lights
>Intolerance to loud sounds
>Irritable bowel syndrome (diarrhea)
>Joint stiffness (mostly in he morning)
>Nocturia
>
>If it matters, I am a 61 year old male, forced into early retirement.
>
>So, my question is, do I have CFS or should I be looking elsewhere
>for the cause of my medical problems?
>
>John Richards
| |
| John Richards 2005-07-20, 12:43 pm |
| Comments inline.
Zona wrote:
> Most everyone I've ever known with cfs had the sore throat and swollen
> glands in the beginning at least.
The last time I had a sore throat was five years ago when I caught
a bad case of the flu. I've gotten a flu shot every year since then,
with no reoccurrence.
> The symptoms you have can be from several other things. The main tip
> off to me that it's likely NOT cfs is that you don't have a problem
> with stanima and can do a 30 min workout without wiping out. Altho i
> had cfs from the beginning I didn't know it for 9 yrs. I did know
> that i'd had pesticide poisoning and got multiple chemical
> sensitivity. That can cause all the symptoms that you mention
> including fatigue...also from food allergies as was mentioned already.
> Someone also mentioned sleep apnea. My SIL works at a sleep clinic
> where my brother met her... he has sleep apnea. He had some of the
> problems you mention but not all of them.
>
> Most of the problems seem to be nervous system related. More and more
> they are saying that cfs, fm and mcs are all neurologically based..as
> is MS. There is a lot of overlap between these illnesses btw.
>
> As I'm sure you've already found out the way the dx cfs is by
> eliminating everything else first. Fun and games I know. BTW any
> illness can be worsened by stress, even good stress. That you had to
> take early retirement probably is bothering you too which is adding to
> the situation.
>
> Since there is not much that can be done about CFS or fm (tho i'd want
> to make sure i didn't have something else) perhaps the thing to do is
> to try a bit of experimenting to see if you can find something that
> helps you. For instance keep a journal and see if anything you eat,
> touch, smell, do -are around trigger any symptoms, make you feel
> worse. That is one way to help figure out if something you're using
> is bothering you. For food allergies they do a rotation diet.
You may be right about the food allergies. I'm about to start an
elimination diet program through FoodIntol.com.
> Another thing which perhaps isn't so easy to do but is totally
> harmless, actually is quite GOOD for anyone to do is get rid of all
> the common chemical triggers in your home...ie anything with
> fragrances, household cleansers, hair care products etc ...go with
> simple, natural stuff that are fragrance free (not just unscented).
> watch what you're using and in particular look at what is in your
> bedroom... also watch for molds. You'd need to avoid them for a
> month before you can tell if there's a difference. Even tho i have
> cfs getting rid of all those things cut some symptoms...esp
> brainfog... I try to tell all my cfs friends not to overlook this
> aspect as most of us develop mcs over time if we didn't have it
> already.
We ripped out all the wall-to-wall shag carpeting a few months ago,
and fixed a few leaks. Some of my symptoms have lessened, but
I had attributed it to cutting down on coffee and increasing water
intake. The nocturia and joint stiffness have improved quite a bit.
> hope that helps
> zona
Thanks very much for your input.
--
John Richards
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