Do any of you have any experience with any Stimulant Meds., like Adderal of Provigil? What was your experience? Good or bad? Thank you!
Sue
Coffee makes me feel hyper and anxious. I drink one cup of decaf a day.
Sue
sorry no have never tried it. coffee makes me very nervous and hyper. I can
only have about 1cup or less per day. how about you?
Hi sue, I have one cup of coffee in a.m. its 1/2 decaf and if I
have more I just go to the bathroom more but nothing makes me feel
speedy anymore. I think that cfs does that
Cindy
Hi Ive taken adderall and several other stimulants to try to get some oooomppphhh back in my oomp. So far nada…I think they work for a while but then I crash for 2 days of sleep and pain. Right now I am trying to use a light box to simulate natural sunlight. Being I live in Seattle that is a must, also I had been searching on the center for disease control where they acknowledge the issue and they tested several natural products such as the usual ginseng etc you can read their results. My point here is that the only product that they tried that has PROVEN results is a natural product called NADH or the true name of it is Nicotinamide adenine dinucleotide. No it is not a coffee or caffeine in it nor nicotine as I originally thought when I read about it. It originally was called coenzyme 1 not Coenzyme Q10 but the one I listed first. It comes from the vitamin B3 group. I am trying it, but it takes a while to absorb and become noticeable, like 3 or so weeks, and it does cost about 30 bucks a month. But for me, if I can get out of this sleep rut and energy rut Ill be thrilled. Anyway just my 14 cents worth and at least more things to check into. Good luck all. Candy B
Candy,
Right now, I’m trying a supplement that is a combination of CoQ10, Alpha Lipoic Acid and Acetyl L-Carnitine. I haven’t noticed any increased energy yet. I wonder if you have to use it for a while?
Sue
to all of you, I have tried all types of vit. and herbs,etc. I could open up
a pharmacy, ha ha, The thing I see over and over again is to take all your
vit. b’s very important for the nervous system and energy conversion. also
the omegas at least 2-3 per day very good for brain activity and the cardiac
sysyem and also helps with depression,etc folic acid 800mcg/day very
importantand calcium withh magnesium at least 400mg/day You can take 200mg
in am and 200mg in pm It is an enzyme that helps most parts pf your body
good for arteries muscles brain activity without any toxic effect if you
take to much it will makeyou have a bm, so then just take a little less I’ve
done tons of research about magnesium and noone talks about it but it’s like
natures little secret . also youshould increase your vit d to 600mg along
with your calcium. newistinfo on vit . vit. c is a must for all of us to get
rid of body inflammation esp. if your a smoker. your lungs will thankyou for
that 1500-2000my/day if you smoke. get all those toxins out.1000-1500 is
enough for the average person unless your sick with a cold or something then
up it to2000mg. vit b12 is as far as I know suppossed to be difficult for
your body to absorb so it is suggessted to take alone an 1hr or so before or
after you eat. well thats all I can think of for now oh one more thing the
vit that Sue mentioned on reply are supposed to be good for you ,too the
CoQ10 very good for free radicles that we dont need in us and also great for
the cardiac system.the other two are supposed to help get rid of fats in
our system. they help break them down so we can loose wt ,etc. well that is
it for now I hope your not all bored to tears with my vit. spiel!
connie
In a message dated 5/9/07 3:52:14 PM Pacific Daylight Time,
cfs-cpt3158@lists.careplace.com writes:
Right now, I’m trying a supplement that is a combination of CoQ10, Alpha
Lipoic Acid and Acetyl L-Carnitine. I haven’t noticed any increased energy
yet. I wonder if you have to use it for a while?
I generally give any new product a month to work.
When the bottle is empty, I do without for a few days to see if I backslide
without it.
I tried NADH years ago. The first day, I had a major bounce, but didn’t
continue to improve. When I ran out, I didn’t see any change. A couple weeks
later, I got out for another package, didn’t see another bounce, and concluded
that it wasn’t worth the money. The bounce I had was probably just coincidence.
Karen M. Campbell
Sacramento CA
Hi all,
I guess all I would say about anything is that as my Dr says unless it is something that would be conceived as harmful to ingest, why not try something that might be new out there. Or a different combination or whatever. I keep trying things to keep my energy levels up, no bouncing here just kind of steady. Most things to take a while to kick in though. At least most of the prescription drugs that can be taken a lot of them need time to get in the system. I think Ill keep trying and see what might help. Meanwhile it is nice to hear others that have the same issues I have. Geez, we just went to Reno to celebrate my husbands birthday and the landing coming back was brutal. We literally smacked down and man talk about hurting. So I spent a whole day plus some in pain in my hienie area plus hips from this crash landing. But at least Im down to one day of sleeping instead of the two I did about a year ago. Id be happy to see what others are taking to try to combat this illness. Gee anyone that thinks this isn’t an illness is completely nutso. Take care all. Candy
Candy, I am so sensitive all over that its gotten embarressing just to shake
someones hand ,esp. new people . the’ll shakemy hand and all of sudden I’m
almost on my knees with a big ouch! my tender points seem to be getting
worse lately my hips right between the joints , my knees and the out side of
my thighs burn when you touch them and it goes on &on. I just don’t
understand why dr.s take such a lacsidazical approach to this ,I t makes me
so angry.It feels alot like arthritis ,but with something extra. I called
this well known arthritis center here in town where they used to take and
treat firomyalgia pts. so I called thier office a few weeks ago and they
said we do not take pts with fibromyalgia anymore. I asked why? and the
nurse just said we just don’t. I felt like I had the plaghue or something.
I went to two otherdrs. who were rheumatoligsts and they both sucked crappy
attitutde and all. I was finally told by my primary dr. to go see a pain
specialist, we’ll see how that works out ,although the pain meds have helped
the pain alot, but thier very addicitive so I have to be very careful which
so far its been ok. well enough about me, I hope you at least had fun on
your trip .I kind of stopped dating and have been alone for a while ,I
hatetop fake my feelings and don’t realy want to talk about this illness,
but then how do you explain the fatique etc ? I kind of give up, but I’m to
young to give up and thats where I start to feel depressed. I try to stay
positive and keep a good sense of humer, but at 53 I don’t think guys realy
give a shit unless you look like a model and have haave all this energy like
I usd to have. Oh well I realy did not mean to throw a couple of dowwners in
there Be glad you have a husband who loves you,take care sorry about the
complaing,
connie
In a message dated 5/12/2007 6:45:09 A.M. Pacific Daylight Time,
cfs-cpt3158@lists.careplace.com writes:
I called
this well known arthritis center here in town where they used to take and
treat firomyalgia pts. so I called thier office a few weeks ago and they
said we do not take pts with fibromyalgia anymore. I asked why? and the
nurse just said we just don’t. I
I got the same thing after my long-time doctor was hospitalized (and then
died).
She had given me a list of doctors who were good with CFS, and I called them
all. This one simply wasn’t doing CFS anymore, that one had given up on
CFS/fibro and was doing exclusively diabetes.
A friend insisted that I call her beloved rheumatologist, and as soon as I
said CFS, not even her name was enough to get me in the door.
I wound up with the only doctor in the area who was willing to see me, and
it turns out that his ulterior motive was to prove to me that I didn’t have
CFS, I was just depressed, and that his combination of anti-depressants and
verbal abuse was what I needed to get back to work. All his pills did was make
me violently ill.
Karen M. Campbell
Sacramento CA
Join us for CFS/Fibromyalgia Awareness Day – May 12
Please write your elected officials, and enclose the Request for
Congressional Action prepared by a committee of patients:
http://www.co-cure.org/Congressional_Action07.htm (http://www.co-cure.org/Congressional_Action07.htm)
Thank you!
www.CFSfacts.org – where we give you the facts and dispel the myths
CFS Myths, with citations: http://www.aacfs.org/images/pdfs/myths.pdf
************************************** See what’s free at http://www.aol.com.
No one around here will take CFS either. My theory no way to win in this disorder. So people just dont want to deal with it. Anyone else think that way. Candy
In a message dated 5/12/2007 3:35:30 P.M. Pacific Daylight Time,
cfs-cpt3158@lists.careplace.com writes:
No one around here will take CFS either. My theory no way to win in this
disorder. So people just dont want to deal with it. Anyone else think that
way. Candy
That was the entire point of the government calling it CFS. It was a silly
name that would not be taken seriously. Although it’s clearly the same thing
as Myalgic Encephalomyelitis, it’s damn near impossible to get an ME
diagnosis in the US these days because CDC wants it called CFS and few doctors have
the guts to buck CDC.
When Hillary Johnson was writing “Osler’s Web” (if you haven’t read it, you
should), she did a FOIA request for the government documents and found the
incriminating evidence in their own memoranda that the name was chosen to
benefit the disability system and screw the patients.
It’s been noted that
Prestigious papers, for example, Annals of the New York
Academy of Sciences 1995 (containing 50 papers on clinical
neurology, neuroscience, electrophysiology, brain imaging,
histology, virology, immunology, epidemiology, with contributors
from the US, Australia, Canada, France, Sweden and the UK)
point out the similarities between post-polio syndrome and
ME/CFS, notably that the mechanism of the extreme fatigue
(called “visceral exhaustion”) --is exactly the same in ME/CFS as
in PPS.
It’s also been noted that CFS epidemics tended to occur simultaneously with
polio epidemics until the polio vaccine. They weren’t sure if it was a mild
case of polio or a variant virus. But I guarantee you, if they called it
Polio Lite, people would be far more up in arms about it.
Dr. Richard Bruno, who wrote the book on Post Polio says:
Unfortunately, polio survivors and health professionals are not
aware that PPS exist and are readily treated by reducing
physical overexertion, “conserving to preserve” polio survivors’
remaining poliovirus-damaged neurons, and not by exercising
and the “use it or lose it” treatment polio survivors received 50
years ago. Polio survivors and health professionals need to be
aware of the cause and treatment of PPS.
Sound familiar? Doctors are telling them to “exercise your way back to
health” because they’re just as ignorant of proper PPS treatment as they are of
proper CFS treatment. And it has the same effects.
The first thing we need to do is get CDC’s point man for CFS, an expert in
"stress", waaay far away from CFS and get him replaced by a virologist.
Someone who understands that viruses can have long-lasting consequences, and that
we don’t have blood tests for every possible variation of every possible
virus.
************************************** See what’s free at http://www.aol.com.
Ohhh Connie, dont worry about being a downer. Believe me, I am doing my level best to not be one myself. I tend to be negative and it is very difficult at times to stay positive. I am very very fortunate myself to have such a fabulous family. I think there are some places that you can meet potential mates that would be understanding about it. As far as the pain meds go, you just need to forget about them being addictive. Id rather be addicted to pain meds than be so miserable in life every day. I take morphine regularly and yes it is highly addictive but its a necessary evil if you will. This is a disease that has no easy answers and most Doctors just do not know what to do with it. My advice is to do what it takes to make yourself comfortable. If that is what it takes to be in a so called normal lifestyle then so be it. I know it sounds like failure but this is a disease that they CANNOT decipher so you need to do what is necessary to have a good life. Talk about too young…Im only 45 and have had so many freakin surgeries that its unreal. I am starting on my chemo next week for breast cancer. I am thankful, and I know that sounds odd but there is so many solutions to other things that to know that this is something that has affected me and that once the cancer was taken out I felt much better. But I had the CFS before that. Please please, do you need to talk??? Ill be happy to talk to you about it…mostly please understand that you need to take medicine to control the pain. This is a horrible thing to deal with and you need to do what is necessary to deal with it.
write to me off list and Ill either give you my phone number or I will call you. You sound like you really need help. I feel badly and believe me I am soooo thankful I have my family. my off list email is cab102361@comcast.net. please feel free to write me maybe we can talk. you sound like you are resisting medicines. DONT its a necessary thing. Candy
In a message dated 5/12/07 4:14:04 PM Pacific Daylight Time,
cfs-cpt3158@lists.careplace.com writes:
you sound like you are resisting medicines. DONT its a necessary thing.
Absolutely.
I got in the sorry state I was in because the doctors wouldn’t give me
medication. The turn-around once someone finally gave me what I needed was
remarkable.
I can keep clients instead of doing an endless series of one-time jobs.
I’ll probably never go back to full-time work because the doctors let me
deteriorate too far without proper medication, but I’m a lot more functional than
I was without medication.
The sleeping pills were helping, but after someone finally gave me pain pills
… WOW! I started waking up feeling like I remember normal. It didn’t
last, but it was something I hadn’t felt in years.
Karen M. Campbell
Sacramento CA
Join us for CFS/Fibromyalgia Awareness Day – May 12
Please write your elected officials, and enclose the Request for
Congressional Action prepared by a committee of patients:
http://www.co-cure.org/Congressional_Action07.htm
Thank you!
www.CFSfacts.org – where we give you the facts and dispel the myths
CFS Myths, with citations: http://www.aacfs.org/images/pdfs/myths.pdf
See what’s free at http://www.aol.com.
sue… one of my CFS friends takes a stimulant med and she does say it gets her throu her day (she’s still working part time).
She thou also has said it also thou has a down side, that being it often makes her overdo things…so when she crashes… she crashes much worst than she did previously.
"Right now, I’m trying a supplement that is a combination of CoQ10, Alpha Lipoic Acid and Acetyl L-Carnitine. I haven’t noticed any increased energy yet. I wonder if you have to use it for a while? "
I dont know how long that combination would take to start to affect one if its going to help at all but i know some things can in fact take up to several mths for the affects to become noticable.
When im taking something like calicum daily (for hormonal mood swings…but some CFSers also use it for cramps and spasms). ive noticed it takes 8 weeks…for me to notice the affects of it (the moment I come off of it thou… I can notice the negative difference in my hormonal cycle mood).
I assume some other things may be similar or take even longer. So I’d suggest trying things for 3 mths before quitting on them as it may be just something which takes a little time for effects to show.
" I try to stay
positive and keep a good sense of humer, but at 53 I don’t think guys realy
give a shit unless you look like a model and have haave all this energy like
I usd to have."
connie… there are guys out there who it gives them a great degree of satifaction to be taken care of another.
Ive recently come across 3 different guys like this (all single and all were interested in me, thou like you, I have no energy. I cant work at all or even take care of myself well).
Im 36 and ended up choosing to go for the 67 yr old guy as I felt I’d be more able to keep up some, with an elderly guy. (Im only too aware that even if a younger guy dont mind looking after me, I’d hate to feel like Im letting a younger guy down, by not being able to go out places with him etc etc).
Anyway, this 67 yr old guy is currently being like a godsend to me, helping me out in so many different ways… even to the point of ringing my country to sort out all the bullcrap the government depts are putting me thou.
Within the month (hopefully right after the 7th of June… just waiting to get some medical appointments out of the way and hoping I wont get other important tests booked), He’s paying for me to go on holiday and meet him (no commitment necessarily if I dont like him as he thinks I could do with a break anyway and wants to treat me to one). If i like it with him, i have the option to stay.
So dont loose hope…there ARE nice guys out there who would still want you and would feel good looking after you.
…
On the subject of addictive pain killers, I personally think real care needs to be taken around that kind of stuff and ADDICTIVE ones I think should be avoided if at all possible. I say this as I used to have severe FM (I couldnt handle any part of my body touching anything at times, even laying on bed hurt)…but I dont have FM any more.
If I had been put onto addictive painkillers… maybe today I would of been left with an addiction issue which I could be still fighting to overcome (with no FM present anymore), that would cause aweful stress and Ive still got CFS so that would of been a very bad thing.
I also put my recovery from the FM down to the fact that I had FM, made me rest more, some days I was in so much pain I was scared to move. As my FM is interlinked with my CFS, having to rest more with the FM symptom… helped my CFS some. So as my CFS improved, my FM improved.
Had I been on pain killers… hence not had severe pain stopping me from doing things (thou the weakness i had stopped me doing things too), I would of moved about more and not rested so much. Without pain I would of been more able to push myself more, the pain stopped me from overdoing things more. Hence I dont think I would of gone into a remission state with my CFS for many years if I’d taken pain killers and ignored my state.
Maybe I would of never recovered then for a while??? and maybe then I would still have the FM symptom of my CFS today???
…
(If someone has just FM thou and its not competely interconnected with their FM… I think exercise may be more the way to go…as exercise is know to help FM).
…
For FM if one has okay days where one isnt hurting so badly, I really suggest getting some massage done on those days.
Massage Ive found can help FM some as long as it isnt hurting one too much while being done. I know its impossible to be able to handle thou if one is so severe that one cant stand to be even touched.
In a message dated 5/21/07 11:31:20 PM Pacific Daylight Time,
cfs-cpt3158@lists.careplace.com writes:
She thou also has said it also thou has a down side, that being it often
makes her overdo things…so when she crashes… she crashes much worst than she
did previously.
That’s the problem with anything that makes you feel like you can do stuff.
It’s also one way of determining whether you have CFS or mere “chronic
fatigue”. If pep pills don’t make you crash, you probably don’t have CFS.
http://www.cnn.com/2007/HEALTH/05/21/exhuastion.main/index.html
The key is deciding whether what you’re doing is worth the crash. I have a
great bunch of gal-pals who dragged me off to the mountains during the heat of
summer, reminding me that “four of us are nurses, and all of us are mothers”
(plus one has a CFS sister and two have fibro in the family). They reminded me
that I was safer coming on vacation with them than staying home alone.
I’d have to check into a hospital to get that much attention from nurses
every day. 
I decided that going away with friends was worth the crash, and I’ll admit
there was one day that I was contemplating “you spent $300 just to lay in a
different bed and stare at different walls?” But there was only the one day that
I was totally useless, and I was really fussed over that day. I did feel up
to joining them for dinner, but if I hadn’t, they would’ve happily brought me a
"doggie bag" from the restaurant they went to, or someone would go to the
grocery for chicken soup.
Karen M. Campbell
Sacramento CA
Join us for CFS/Fibromyalgia Awareness Day – May 12
Please write your elected officials, and enclose the Request for
Congressional Action prepared by a committee of patients:
http://www.co-cure.org/Congressional_Action07.htm
Thank you!
www.CFSfacts.org – where we give you the facts and dispel the myths
CFS Myths, with citations: http://www.aacfs.org/images/pdfs/myths.pdf
See what’s free at http://www.aol.com.
Hi, at this point I basically told this guy to get lost .I would rather be
alone then be with a jerk. So this guy is good to you and that is good I
hope it makes you somewhat or more happy. Your a worth it female and you
deserve to be happy however you choose to do it , as long as your in control
and some one else doesn’t dictate your life. take care I hope things work
out for you thanks for the encouragement .connie
On 5/22/07, taniaaust1 cfs-cpt3158@lists.careplace.com wrote: