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Home Arthritis and Fatique
A couple of weeks ago I mentioned in the newsletter that I was dealing with some major fatigue. My emailbox filled with letters of support and offering suggestions. Since so many of us can benefit from these emails, I decided to post them all right here:
Break up projects into very do-able ones. For dinner parties or
luncheons (yes you can do this with RA and Fibro) a) set the table in
stages several days before b) feel free to use deli and easy food - they
are coming to see you. Those pre-peeled organic carrots were made for
us! c) use paper napkins and paper plates if you need. d) take advantage
of stuff you can prepare up to a week in advance.
I don't have
tips..I just wanted to say thenk you to all who have shared their
stories. My family think that I am too fat because I fall asleep all
the time...they are stil having trouble after 9 years with my RA. This
forum may end up being a lifesaver for me. Thank you again.
-Michael
This is a quick summary of my method of combating the old fatigue factor.
I have severe RA and I have a problem with fatigue, too. I found out by reading your notes that I'm not the only one who falls asleep on the toilet! :-))) I consider myself lucky to have the doctors that I have. I got hit hard and fast with RA, progressing from just my feet to all over my body within 2 months. My family physician sent me to the rheumatologist and he put me on very aggressive treatments right away. Still, it took several months for my body to "uncurl".
In addition, I was sent to a psychiatrist to deal with the emotions of a sudden life change. He put me on Cylert (pemoline) to help with the fatigue, as well as Paxil for the depression. The Cylert helps a lot. I'm supposed to take 2 a day, but I only take one unless I have something coming up (like a family visit or something like that). If I take 2 every day, I feel pretty wired.
I kept working for 8 years after I was diagnosed. I was a teacher in a private vocational school and on my feet all day. I don't recommend doing the same. I caused some damage to my feet because of working. At the time, however, I didn't know I had any options. I'm at home now, on disability (now THERE'S some red tape!!!!)
I cried for the first two months after I quit working because I didn't know what to do with myself. I'm used to it now, and I have some hobbies to keep me entertained. I can't work on them for very long each day or I get a flare-up, but it's something.
Anyway, even though I'm at home, I still get tired all the time. I still take Cylert, but if I don't have my afternoon nap, I'm going to fall asleep on the toilet (again!) at about 6pm!!!!
Alter your dreams for your life, or live a nightmare. So you will never hike the appalachian trail, don't be upset, the stairs are an acceptable challange. Get a picture book of the appalachian trail. Allow some pity time, maybe 15 minutes a day to cry and feel sorry for yourself, then stop or you will kill your soul. You must accept your fatigue and so must your family and friends. Educate them and they will learn to support. Remind them of the time they had the flu for two weeks and how you feel that way every day all day. There is no one solution, so build a patchwork quilt of solutions for living your severly altered life. Hang around other sick people, this is the one case where misery loves company, you will end up laughing at a lot of things. Hang in there but do not hang yourself. -Bubbbles
I showed this article to my doctor, finally I was told that the fatigue I was feeling was real. He out me on Provigil, it does work, however, I need something that is going to work all day, by 2:00 I am falling asleep again, but, I at least can get my work done in the morning. I hold a full time job, I do the accounting for a small software company. They depend on me a lot. The depression gets to me because I do have so much responsibility and I feel like I am letting them down. When took this job 3 and ? years ago I never thought I would have a chronic illness. I am 48 years old and I had gone back to school so I could have a better job, all my jobs had been brainless and I needed to make more then minimum wage. I was so happy when I finished school and got this job. I was finally going somewhere! Little did I know that in less then a year my life would come crashing down on me! Mad? You darn right I am! I never wanted to be a burden to anyone! I went back to school so my kids didn?t have to take care of me in my golden years or if I got sick, (we had to help my mother, and yes we all resented it) So now I worry every day, because I DON?T KNOW WHAT THIS DAY OR THE NEXT DAY HOLDS FOR ME!!!! Thank you for listening to me!Please everyone take care - Wilhelmina
I'm a "fitness instructor" and was diagnosed with RA less than a year ago. I feel like such a fraud - acting peppy and fit and then collapsing after the class. I've given up some of my more intense aerobic classes but love this so much and am trying to find a way to continue in this line of work. I'm on plaquenil and vioxx and it seemed to work for awhile but now I'm up and down - good days - really bad and painful days and figure this disease out. Question: does any medication take the pain completely away or is that an unrealistic expectation ?
What a downer I sound like. On the up side a nap for about a half hour helps and then I can pretty much make it through the rest of the day. I guess the point is to give myself "permission" to nap and stop feeling like I'm just being lazy. - Rosemary
I don't have any fighting fatigue facts...I was told that since my RA was somewhat under control there was no reason for me to be so tired. I have been on the same meds for over a year and up until 3 months ago, had no problems with being so tired. I can sometimes feel myself drift off while I am eating, going to the restroom....etc. All I have to do is put on hand to my forehead and rest my head it and that is it. So am I just faking being tired? Or maybe the meds are making me tired? I know one thing I am reallly tired right now and I feel like crying because I am soooo tired of hearing it is the meds...or honey if you want to hear about tired!!!!
Sorry, I am exhausted and every joint in my body hurts, I have to stop feeling sorry for myself!
Thank you for listening - W.D.
I have FMS, DDD, crohns disease and just recently diagnosed with MS. The fatigue from the MS is bad. I told my neuro about it and she put me on Provigil. I take it as needed. It is actually a medicine for narcolepsy.
It really works for those days I have to get something done. I call it my pep pill. - Shirley
Hi to all fellow fatigue sufferers,
I have just found out that I (and my older sister) are not lazy or hypocondriac, but akylosing spondylitis sufferers. It is the frustration of wondering why one has to have a sleep most days that is the most wearing on a persons psyche. Also the stiffness, aches and pain that remain oblique in origin with most doctors. My sister went from doctor to doctor for years trying to get an explanation for the dragging fatigue and the crippling pain in her neck. Finally it was her osteopath that put her on the right track with the doctors and a diagnosis!!!!! I have learnt from her not to let yourself be put off if you feel some-thing is not right.
My story is: 15 kilos overweight, starting to feel stiffness, had fatigue for near on seven years, ( a very unenlightened doctor told me I needed a holiday) after having a severe attack of glandular fever (while pregnant second child), gradually got back to light jogging with a very low-fat eating regime, being nice and thin (for the whole family), felt better for it. Moved interstate, and with all the stress came down with what seemed to be Chronic Fatigue Syndrome. Life was a haze of fatigue, did the exercise routine, then had to sleep most of the day, interspersed with palpitations, severe giddiness. Visited reputable naturopath, returned me to a near normal existance with Vitamin B and other tonics, and a less intense exercise routine. Got back to work, (banking) very stressful, started munching on the sugarless chewing gum, Phenylalanine (aspartame)., slowly spiralled in to ill health again. Little did I know that aspartame is highly toxic. 2 years. Found out about the toxicity of aspartame, stopped ingesting it, and the head cleared and alot of the fatigue, but was expecting it to lift totally, as I started light running/walking again, lost 10 kilos, but the fatigue still lingered. Was going crazy as I expected to at least feel a little better, so my routine is: Slowly rise, eat two pieces of fruit orange and apple (quick energy lift ), with a 500 ml bottle of water, and TWO guarana/ginseng 2000 mg tablets, otherwise I just can't be bothered to live life!! Exercise for 1 hour most days, alternating aerobic activity with strength work-out, then sleep for an hour or two depending. Get up do house-work if able. If the fatigue is expecially bad ,and I need to, I take another guarana tablet. I have checked with my naturopath and she o.k'd two tablets a day, but not four for long term.
The worst thing I have found is trying to make friends and family try to understand understand about the fatigue,(before diagnosis) but I have found it more wearying and stressful, and downright demoralising to try. So to all I say, they don't have to live in this body, so they will never understand, so save yourself the trouble.
A great saying
Until you have walked in anothers shoes, you are in no position to judge!!
Hope this was helpful. - A. I am new to this website and
new to arthrits. i have three different types, PA, inflammatory bowel
disease, inflammatory arthritis, and fibro. I have two teenagers and
we all know how selfish they can be. I am so tired all the time. I do
the B-12 shots and B6 shots which really help. what seems to bother me
most is sugar. i think. i know it is some type of food that puts me
into a spin but i can't figure out which one. i kept a food diary but
sometimes a food does it and sometimes it doesnt. my rheum put me on
malic acid. that really helps alot!! haven't accepted this disease yet
and it is very depressing for me but it looks like this website can
help. thanks everyone, -karen
Hey Y'all... After being diagnosed with RA 19yrs ago i have found that much of time the fatigue is harder has been harder to get passed. i worked for 22yrs as a nurse have 4 children and i remain married to the same man for 23yrs. It would seem that despite the RA i was doing well. Then i turned 40 and i feel like i have been trying to wake up ever since. i could longer work do mainly to the
exhaustion, and trying to keep up with my husband and family was not only painful but depression. Well i knew that i needed to get my life back to some sort of
normalcy or i was going to loose my mind.-----These are some of the things that helped me. A lot of great tips here--ones I will incorporate, especially adding
more B-12. Thanks, everyone! I'd sooner put up with the joint pain than
the fatigue...it's awful. :-( Hi.I've been diagnosed as a sufferer of AS and chronic fatigue for 6 years. I find what works best for me is to pace myself and not to say 'yes' when I mean 'no'. Hi! I have found the fatigue fighting tips here very useful. I have had RA for the last couple of years and fatigue hit me hard last spring (2001). I would sleep 10-13 hrs a day if I would let myself, whcih I usually did on the weekends. During the week, I tried for 8-9 a night. Unfortunately my job does not allow a nap during the day, but I have used the bathroom trick mentioned by DeeTee. I am going through the Lupus diagnosis process. I have read that I am not alone with the fatigue! I am so tired all the time! I work from 3:30 to midnight so getting to bed early is impossible. I usually wake when the rest of the family does around 7 am. My husband doesn't understand why I can't function on 6 hrs. of sleep like I used to just 6 months ago. I nap for an hr. or more in the morning and another hr. before going to work. Someone mentioned taking the Calcium +D before bed and not in the morning. What a wonderful idea! Thank you. One think I find helps is to make my meals smaller. The more I eat at a meal, the more sleepy and tired I feel within a 1/2 hr. or so. I may have an additional snack of fruit or veggies but it has helped a lot!
-Kim
I've found that taking Chyawanprash very helpful. I've even found energy to paint my bathroom!Amla fruit is the one of the main ingredients in Chyawanprash. Hi! I am taking Provigil now for about 10
days. Honestly I cannot say if it is helping or not. I do notice that I
am a bit more anxious since taking it. I am going back to the Md. who
prescribed on Tuesday and I will mention it to him.-Andrea.
I
am 53 and have been Dx. with PA when I was 25. I guess you could say I
am moderately severe and ,at present, find that most of my daily
activities are limited by pain and fatigue.
Hello! I was very surprised to here of someone else sho is taking
ritalin with RA. Originally I too was diagnosed with narcolepsy. It
was 3 years before I diagnosed with RA. The fatigue was so bad at
first I would sleep 18 hours a day I couldn't get out of bed. There
are still days where I have fatigue and I still need a nap most days.
I am just glad to here I am not the only one.-H
I am 53 and have been diagnosed with
psoriatic arthritis for 20 years,,Lately fatigue has been more in the
picture of debilitating aspects of PA. One thing that helped with me was
acceptance, that being accepting fatigue as just another aspect of my
disease pattern... hi everybody!!! I'm new to this
websight but while clicking through the screens something caught my eye,
FATIGUE!!! I am 22 years old, and I was recently diagnosed with RA. I
knew something was wrong with me, and many of the stories I read were
about me, about all of us. Little things were different, the time the
place, the degree but it was all the same, it was FATIGUE. I have never
been one for drugs and I'm currently taking prednisone, and plaquenil,
and nortriptiline and i can barely make it during the day. i drag on
like a "slug" as the day goes on, but then I decided
to pep up. the first thing that helped me was to learn all that i could
about RA, about my meds. Then I found a doctor who practices more of an
inner and outer body medicine. I am now involved in an Aquatic
program, and a Pace program both which are designed for Arthritis
suffers, I also layer my clothes, keeping warm seems to help my fatigue
and my pain. I also frequently have massages (from someone who
deals w/ people wth some form of arthritis) and I practice Tai Chi,
which teaches you how to read your body , its signals, and that inner
peace that you get seems to make everything go away. In
essence, I think for me a combination of meds, and spiritual wellbeing
makes all the difference in the world!!! -Lildell I find for Fatigue the B-Complex with
zinc works so well once in the morning and once at night only if you
have a night job, otherwise just in the morning I have inflammatory arthritis in my knees and wrist
and there are times when I am so tired that I just know I cannot take
another step if my life depeneded on it,so I decided that since I am an
'outdoors' type of person and enjoy being outside doing a lot of
gardening, fishing, bird watching and the like that I was not willing to
let go of that.I started to take a little stroll every day..just a few
minutes at a time, and now I am up to half an hour !! I feel much better
and don't get so tired as I used to and I noticed I can go a lot longer
during the day without getting so tired.Our local mall has a 'mall
walkers club' where all sorts of folks get together and walk around the
floors of the mall, its a great club and fun to be in.When I joined ,I
huffed and puffed and could not make one floor let alone, 3 !!!! Now I
can walk around the outside of the mall with little effort..its about a
mile and a half if you walk around outside and a little less if you walk
the 3 floors inside. So I would suggest just strolling around a little
here and there,you'd be surprised how much better you will feel if you
do.I would love to hear from other people who walk for the fun of
it.Maybe you could form a mall walkers club in your area malls -Kaye I
just HAVE to say that all of those references to falling asleep at the
computer, while you are in the middle of a conversation, etc., have been
happening to me for quite a while. (On the day before Thanksgiving this
year I was diagnosed with RA after 2 1/2 years of extreme foot pain
unexplained.) Until this very second I had no idea that my tiredness and
the unusual fatigue I have been experiencing had anything to do with a
medical diagnosis -- and of all things, I am a working RN!!! My level of
fatigue had been steadily becoming worse and worse and the more fatigued
I became the more I would get depressed over being tired and fatigued,
and I am such a go getter type. Thank you everyone for enlightening me
so much ... I feel like I am learning so much, and it is all such a
relief for me to know that all of these things are not just something
that is just happening to me all by myself. I love you all. My first
rheumy visit is DEC 13th and I feel I have learned more since
discovering this site in the past few days than ever before in my life.
What a life saver you all are!!!!!!!! -Lynn My dr has found that the Dhea-S level in my blood was
way too low, something that seems to be quite common in RA /SLE
patients, it is supposed to be somewhere between 0.9 and 11.0 (depending
on age) and mine was 0.56 !! So that was even below minimum! After
starting on a higher dose (it takes some time to find out what dose
works best for you, so you'll need to have your blood tested every month
for the Dhea-S level when taking Dhea as too high a dose causes acne
etc) I have found that for me 12,5 mg a day works best and on working
days I take 25mg. Just to find out if it really worked I have tried to
go without it for a week, and experienced that taking the Dhea is making
all the difference in the world! My average Dhea-level is now between
7.0 and 8.0 which is okay. I used to take two 2 hour naps each day
last year plus sleep 6-7 hours at night. I'm no longer taking naps as
much. Although I might need to lay down to rest for an hour during each
day, I consider that to be a good thing. One of the e-mails you got concerning fatigue
mentioned breads as a cause. I find that high fat meals like pizza or
cheeseburgers make me too tired to move. My family knows...one trip to
Pizza Hut means an afternoon nap for mom! I find if I stay on a high
protein, low carb, low fat diet I have a lot less fatigue.-Dee I usually wash my face in cold water many times a day.
If I feel really tired I put on soft back ground music and have a nap
only takes 1/2hr then I feel great. ~RJ
While driving I'd get so my eyelids couldn't stay
open. I'd bite my cheek, stop and run around the car slapping myself,
pour water over my head and the shock of each quit in a short time and I
absolutely fogged out of function. I tried to figure what I had eaten
when and how much and found that carbohydrates like bread made me
sluggish but cutting it didn't help. I found never have a donut or roll
with my coffee. It wasn't narcolepsy either. I was young when it
started. I never knew when it would hit me or how often weekly, daily,
several times a day or longer periods of months. I even went to sleep
while playing cards with friends at the card table. The only thing that
helped me function was when I felt it starting I immediately pulled over
in my car and put the blinkers on, locked the doors and laid down till I
woke up with a start and was fine. Later in life is was less. ~Joyce I found that Cod Liver Oil, 3 times a
day really helped my fatigue level. Also B-12 shots. My doctor wrote an
RX and I had my neighbor who was a nurse give me one each week! It's an
IM shot so if you are brave you might be able to give it to yourself.
With MS that 4:00 crash is called "Hitting the Wall." I know
exactly what you mean. My neuro suggested laying down every day just
prior to the time it happens. Get horizontal is how she puts it. Put
your feet up and take off binding clothes. I do this regularly and even
if I don't dose off, laying down for 45 minutes in combo with the above
supplements has really helped me fight the fatigue. Hope this helps! ~DianeW I have RA and OA and pace myself every
day. Curl up and do some self-talk "I
am very special and need to lay my little head down to rest and feel
good" Hang in there and thanks for helping so many...balance it
with rest.~Judy Good morning! You're looking for
fatigue busters. Well every day (let me make that clear - EVERY DAY)
take a 15-20 minute break. Since I am at a job, I go into the ladies'
room and just sit on the john, lean my head against the wall and close
my eyes. When the weather is nice, I go out to my car, lower the
passenger side seat, put on eye shades and rest there. Doctors have long
said that a 15-20 minute nap in the middle of the day is as beneficial
as several hours of sleep at night. If you have to, set an alarm clock,
but don't let yourself sleep for more than 30 minutes max. You'll be
surprised how much more energy you have at the end of the day and it
should beat those 4 o'clock blues. ~DeeTee I hope you're doing well. I understand
fatigue all too well. I know vitamins have helped me, as has going on
Weight Watchers -- not as much due to losing weight (which does help
some) but more due to eating so many fresh fruits and veggies, and
generally being very healthy in my eating. Been trying to stay a bit
higher protein and a bit lower on processed carbs. Keeping the carbs to
fruit/veggies and whole grains as much as I can is a good thing. And
drinking TONS of water. Take your body weight, divide in half, that's
how many ounces of water you are supposed to drink in a day. Urine
should be a pale straw color, unless you are taking vitamin B, then it
should be a pale *fluorescent* straw color. ;-) Most of us don't drink
nearly enough. Anyway those are my tricks for helping the fatigue. Also
getting out in sunshine when I can, and getting some form of exercise --
usually a slow walk -- as often as my body will allow. And last but
certainly not least, if your insurance pays for medical equipment, for
about $200 you can get a good quality full-spectrum light box, and that
helps a TON if you sit in front of it 30 minutes once or twice a day
(put it on your desk or by a chair where you read) If the fatigue is
being made worse by seasonal affective disorder it will make a big big
difference. ~Aim Tina this could not come at a better
time. I am sitting here at the computer and actually falling asleep. I
just dont know what else to do and what else to take. I am so glad I can
share this with someone because its really having a tremendous effect on
my life right now and its scaring me. I start having to really panic,
and its just me. Thanks again Tina. I cant wait to hear what your doctor
has to say. ~Rachel Hi Tina, |
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Many of us with inflammatory arthritis
also suffer from fatigue, sometimes severe. See 