Need some advice

Chronic Fatigue Syndrome
#1

I have had CFS and FMS for a long time now. More than 10 years. I had a really good year last year where I was able to go to school and hav a life, but this year I have been pretty sick (other health issues) and now my CFS seems to be kicking back in. I am hoping that this will be a short flare, but my last one lasted 2 years.

Does anyone have any advice on how to stop the onset of a flare? How to minimize a flare? Get more energy? 

I just hate spending my days in bed. I sleep more than 12 hours a day. I can only go out for a couple of hours max before my body crashes me to sleep.

Please, does anyone have any advice??

#2

Please be advise that I will be on vacation from Wednesday October 17th returning back to the office October 29th.

In my absence please contact Rafaela Delanuez at rdelanuez@kglogistics.com or Ingrid Moncada at imoncada@kglogistics.com

Best Regards,
Helga Friday

#3

Does anyone have any advice on how to stop the onset of a flare? How to
minimize a flare? Get more energy?

First off, get some sleeping pills to improve the quality of your sleep. If pain is interfering, then also ask for Tramadol. If the doctor argues with you, point out that it’s available over-the-counter in Canada.

I tend to feel better when I’m eating lots of protein. Meat or eggs at every meal.

If you’re going to put something together at your local health food store,
powdered Adrenals, Co-Q-10 and 5HTP are a good start.

Karen

#4

Thank you for your email.
I will be out of the office until October 18th.
I apologize for any inconvenience.
I hope that you have a great day!
Warm regards,
Linda Tannenbaum

#5

"Does anyone have any advice on how to stop the onset of a flare? How to minimize a flare? Get more energy? "

The only way i know how to minimize one is to start pacing out what needs to be done better… and get a lot more rest.

I’ve found that it’s harder to recover from a crash… than stopping a crash from getting worst. So work to stop it from worsening even if it means giving up a few things right now so you can rest more.

When i say to learn to pace better… i mean if you know you crash some after being out for 2 hrs…cut this time right down, so you dont have that worsening occuring. More rest breaks after shorter periods of activity. One can end up being much more productive and getting more done in their day by doing this.

#6

I reduce white carbs like bread, pasta, etc. and increse fruits and vegetables and protein. This has helped me some. Also, a vitamin mixture called “from fatigued to fantastic” especially made for fibro. and just like others said, don’t overdue!

One day of overdoing tends to crash us for days. I am finally learning to pace myself.

Hope this helps!
Sara

#7

Please tell me more about “from fatigued to fantastic” .

Thank you

Cat

#8

I have fibro, osteo and all of it. You said something about vitamins?

#10

Dear Cat, Fatigued to Fantastic is a vitamin/enzyme revitalization
supplement . You mix the granules in water, and then with that, you take a
B-complex vitamin supplement (it comes with) . My husband uses it, and has
more energy and drinks less coffee! I suggest buying it on line. Cost is
about 35-45.00 for one month supply. My chiropractor charges 75.00, so that
is how we started buying it on line. I only use 1/2 dose because it makes me
anxious_ i have panic disorder so I am VERY sensitive.If you are sensitive
to new products, you may want to 1/2 dose at first. If not, take a full dose
(once daily). If you cannot locate it on line, let me know, I will find a
website for you! I just can’t remember exactly where I ordered it - sorry!
It may not be a magic cure, but I believe it will help with your fatigue.
Please let me know how it goes - I hope I have helped you a little bit!
Wishing you energy, Sara
----- Original Message -----
From: “CatD” cfs-cpt6386@lists.careplace.com
To: phamann@tampabay.rr.com
Sent: Sunday, October 21, 2007 2:38 PM
Subject: Re: [cfs] need some advice

#11

Dear Achesalot,
the vitamin supplement is called “Fatigued to Fantastic!” It is called an
energy retalization system you take once daily. It it full of vitamins,
enzymes and amino acids. You mix the granules in water or juice, and take a
B-complex capsule with your drink. (capsules included). A one month supply
is 35-45.00 a month. My chiro was charging 75.00. We now buy it on line.
My husband uses it every day. I reccomend it to anyone with fatigue issues.
It was specially made for people with fibro/CFS, but I believe anyone can
benefit. I do not sell it, just use it. If you cannot find it on line, let
me know. Hope this helps! sara
----- Original Message -----
From: “achesalot” cfs-cpt6386@lists.careplace.com
To: phamann@tampabay.rr.com
Sent: Sunday, October 21, 2007 3:22 PM
Subject: Re: [cfs] need some advice

#12

Hi , I am sorry if the vitamins did not help Karen. I know it is not a magic
cure. To anyone who is interested, I think it is worth a try. Sometimes you
need to take supplements for a month or so before you notice a difference.
It is a vitamin/enzyme/amino acid supplement you mix with water or juice. It
also includes a B-complex vitamin. Take it once daily.
My husband swears by it. You may order it on line for about 40.00 a month
supply. Hope this helps!
----- Original Message -----
From: “CFSfacts” cfs-cpt6386@lists.careplace.com
To: phamann@tampabay.rr.com
Sent: Sunday, October 21, 2007 3:56 PM
Subject: Re: [cfs] need some advice

#13

Dear Barbara., I have tried several things for CFS, and the only thing that
worked for ME, was pacing. I have read several books on CFS, and it makes
sense, because we only have a limited amount of energy we can expend (even
less than others without CFS). Is there any way you could work part-time?
Change jobs with less stress? I know these ideas are easier said than done,
but I HAD to do it. We live on one income. We struggle to make ends meet. I
drive on E a lot of the time, etc
It still is the best decision I ever made. If you are not able to make
drastic job changes, make sure to speak to your family (yes, even the kids)
and see how they can help out. Maybe a teenager can make Hamburger Helper
for dinner, or if you cook, someone else cleans up. Work a nap or rest
period into your day ie. 1/2 rest time after you are home from work before
you start your work at home. Go to bed earlier, just to rest. I fall asleep
by 10:30, but I try to get into bed by 9:00.

If you do laundry on Monday, do not do any on Tuesday. Maybe you vaccume
instead. Wednesday take a break from house chores, and do something else on
Thursday. My house is not perfectly clean, and my dinners are simple and
tasteless at times, but the upside is I have more energy, I am happier, and
a better wife and mom.

Modify your diet if you have to. Include lean proteins like chicken and
fish, and lots of fresh fruits and veggies. Try American Ginseng which you
can find at a health store. Exercise does not work when I am having a flair.
It makes it worse - however, some people swear by it. I do stretches
instead.

I had a family meeting and basically said "I cannot and will not do all this
anymore, my body will not allow me to. I feel I am slowly killing myself!"
My husband listened, and so did my daughter. I MAKE time to rest, just like
I make time for other things in my life. Make time for YOURSELF. You are
valuable, and you are worth it!! I hope this advice helps, if just for the
fact that you know you are not alone! Sincerely, Sara
----- Original Message -----
From: “Barbara” cfs-cpt6386@lists.careplace.com
To: phamann@tampabay.rr.com
Sent: Monday, October 29, 2007 6:38 PM
Subject: Re: [cfs] need some advice

#14

In a message dated 10/21/2007 6:24:12 AM Pacific Daylight Time,
cfs-cpt6386@lists.careplace.com writes:

When i say to learn to pace better… i mean if you know you crash some after
being out for 2 hrs…cut this time right down, so you dont have that
worsening occuring.

The problem is, some of the things I need to do require a single exertion in
excess of my known limits. I can’t go to the grocery store today and come
home tomorrow and put the ice cream away the day after that. Safeway sorta
frowns on people sleeping in the aisles!

But those things that you can control, definitely, don’t feel compelled that
you “have to” do the laundry start-to-finish in one day. Strip the bed
today, carry the basket to the laundry room tomorrow, load the washer the next
day, move it to the dryer the day after that – a single load of laundry can
take me a whole week, but I’m not bedridden in between.

************************************** See what’s new at http://www.aol.com

#15

The pacing is a great idea but what about when we have to go to work and do
all the other stuff? Any ideas on just trying to get more energy with CFS?

Thanks
Barbara

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#16

Pacing is an excellent way to manage fatigue - This is what I do when my fatigue is really out of hand or when I’m recovering from a flare. It’s worked since I got sick in 1995 and it’s how I recovered from being in bed for 6 weeks.

I call it the bargain energy plan.
I’ll ‘work’ for 1/2 hr to 1 hour then stop for an equal amount of time. If I’m recovering from a real flare, I’ll double the time I need to rest.
For example. I keep my winter clothes put away - so when it gets chilly, I have to ‘switch’ my clothes. So, I’ll take all the summer clothes from the closet and the dresser drawers and put them on my bed - for 1 hour.
Then, I rest for an hour.
Then, I pull out the winter clothes and put them away - for 1 hour, then rest for 1 hour.
Then, I put the summer clothes where the winter clothes were - for 1 hour and rest one hour.
If you’ve been counting - that’s 6 hours to do one ‘project’ (my word).
Yea, it’s a long day - but I got 3 hours of rest back during it. It’s hard to do the rest part with the chaos of everything around you - but if you don’t - you’ll be in trouble.
The next day, I’ll finish up what other switch stuff needs to be done.
I do laundry when I watch tv - we have a tv in the basement - where my hubby and I usually go in the evening. That’s when I do the laundry - usually I can get most of it done in one evening (there’s only 2 of us). We sit and watch a netflix movie and I switch loads, fold and then my hubby will take everything upstairs for me. I put it away the next day - or the next 3 days - depending on the other stuff that’s going on in the house. Many times, I have a full laundry basket of clean clothes and several days of dirty clothes on the floor! But the dog likes to sleep on them, so I figure it’s ok.
As for when you’re working full time - that’s a toughie. I personally feel you need to let your boss and close co workers in on what’s going on with you - health wise. Just as if you had cancer or a serious illness -you need to let them know you have a serious fatigue illness. It will help them understand why it takes you longer to do some tasks on some days.
The other thing I feel you need to do at work is make lists of what needs to be done and the priority in which they need to be done. I feel that organziation is key. Then, when you have a low energy day, you can work on the lower priority items and pace yourself. Another option that worked for me - I was fortunate - is to work part time. You’ll expend less energy and still have time to do ‘home’ stuff. Eventually, my fatigue became so severe, that I needed to apply for disability. But I still use the ‘tricks’ that I used at work to manage my home life.

I hope this all helped!
Linda

From: CFSfacts cfs-cpt6386@lists.careplace.com
Date: 2007/10/29 Mon PM 05:17:07 CDT
To: lkaserman@verizon.net
Subject: Re: [cfs] need some advice

#17

Dear Linda, your email about pacing what excellent - I hope Barbara will
heed some of your advice! I only wished that I started “pacing” many years
ago. Your husband sounds very helpful and understanding. When you have
support from your family it really makes a BIG difference. I wish you energy
and wellness! Sara
----- Original Message -----
From: “Nannyspoons” cfs-cpt6386@lists.careplace.com
To: phamann@tampabay.rr.com
Sent: Tuesday, October 30, 2007 10:47 AM
Subject: Re: [cfs] need some advice

#18

In a message dated 10/30/2007 9:12:03 AM Pacific Daylight Time,
cfs-cpt6386@lists.careplace.com writes:

Your husband sounds very helpful and understanding. When you have
support from your family it really makes a BIG difference

Amen to that. Any time I had to ask for help, I got snarked at “I didn’t
get married to have to cook and clean.” He wouldn’t even look for a better job
(he had enough education, just not enough ambition) that paid more so that I
could cut back my hours at work per doctor’s orders.

The first doctor we saw had the theory that all women want to be housewives
and will fake an illness if their husband won’t “let them” quit, and persuaded
him to ignore all the objective unfakeable things he’d seen (like the
fever). Even when I got the diagnosis and reassurance that “it’s real, you’re not
imagining things”, he still preferred the first doctor’s assessment that I
was a hypochondriac who used this illness to avoid doing things I didn’t want
to do. (He’d grown up in a household where people did make excuses to avoid
chores they didn’t like.)

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#19

In a message dated 10/29/2007 3:38:50 PM Pacific Daylight Time,
cfs-cpt6386@lists.careplace.com writes:

The pacing is a great idea but what about when we have to go to work and do

all the other stuff? Any ideas on just trying to get more energy with CFS?

Spend all your non-working hours in bed. Eat extra protein. Delegate as
many chores as possible.

I worked full-time 12 years after my diagnosis.

************************************** See what’s new at http://www.aol.com

#20

Dear Spinning-
I know exactly how you feel about the sleeping. Been there, done that for a year on and off. Just recently, I made the mistake of trying accupuncture and I slept 24 hours a day for 3 weeks except to use the bathroom, eat, and brush my teeth and not exactly in that order. Then I got a clue, and decided to stop it for a while just to see. Meanwhile a friend of mine who has had ME-CFS for 20 years sees a guy that won’t touch ME-CFS or FM patients because he believes that it overstimultates both diseases. So after finding that out and having a checkup with my cardiologist(and the tests were all fine), the sleeping got less during the day, maybe down to an hour or two, and I sleep at night REAL good. But in Sept. 06, it was sleep in the morning, then in the afternoon, then I’d fall asleep at 8 pm on the sofa with hubby and then to bed shortly after waking up at 9 pm. I know you feel like a vegetable, but look at it this way, if you push, you don’t get well or you have it much longer, it is essential to your survival. This is the main coping stratedgy that everyone I know tells me. DO NOT PUSH!! And by that I mean, when your body tells you "oh, I feel so fatigued and weak I cannot move from here to my bed, or I’m so fatigued and weak, that I can’t get out of bed. Do what you have to. If you have to get a miniture toilet to put beside the bed do so. Cut back as much as you can in the pushing department and you’ll slowly, very slowly start to see a difference. Not necessarily in the fatigue, but in the sleeping area.
I know also, that if you slept during illness as a child, you’re more apt to do it as an adult as well. It’s your body telling you that your way is to sleep to get well. I didn’t believe this at first, but it really is true!!
I hope this helps.
Blessings and Huggles–Beauty

#21

thank you all so much for the advice.  Beauty - I really especially appreciated your words to remind me that I just have to take care of myself.  I hate the fact that I live with my retired parents. I hate that they are taking care of me. It should be the other way around at this point in our lives. My parents worry about what will happen to me when they are gone. Who will care for me? 

I hate that they have this worry. I try not to think about the future because it scares me to death.

I am sorry that I haven't responded sooner but I have been in the hospital. I just got out yesterday. The fun part is that once again the docs told me that they don't know what is causing the problems. I just have to live with it. What fun. I am frustrated. Well, going to take another pain pill and zonk out.

Take care everyone.