Fatigue - what sort do you have

[Guest guest]

I know a lot of people talk about fatigue, I didn't have any till I added Arava

to the MTX. Tiredness is a side effect of Arava, but maybe its the initial

disease that is affecting me?

 

I get 7-8 hours of sleep a night, bit more on weekends.

 

I don't feel tired at work, the main time is when I sit down in front of the TV.

It doesn't matter what I am watching, it can be my favourite show, as soon as I

am in the armchair which is comfortable (unlike when I am sitting in a straight

chair like now in front of the PC), I fall into a deep sleep within a few

minutes. Not just a doze.

 

I've mentioned it to my rheumy but he doesn't seem concerned. Any ideas of how

to tackle this?

 

regards

max

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[Guest guest]

I call this my tv narcolepsy! It happens to me all the time! I'm not sure it is

related to my mtx dose at all, but more rated to my need for more sleep. I do

find that if I sit as opposed to recline, I am more able to stay awake.

david

[Guest guest]

Max, for me, fatigue isn't about being sleepy or falling asleep.  Fatigue is

extreme tiredness.  I don't usually feel that sleepy, but I feel complete

exhaustion over my entire body.  It is often almost a scary feeling - hard to

even describe...but almost like my organs are shutting down, they are so tired.

Sometimes when it hits, I wish I was closer to a hospital because feel like my

heart, etc should be monitored.  Often when I have it, I can't fall asleep.  I

lay in bed saying to myself, " I hope this isn't it! "   I am learning to rest

before it hits. And the weird thing is that it often goes away as quick as it

comes.  Weird stuff!  It is possible that what you are experiencing is a side

effect of the drug.  It seems that it is more of being sleepy than being

fatigued.  Hope you find something that helps! This disease if definitely a

challenge!

Suzanne Woodring

[Guest guest]

As far as the fatigue goes ­ this was one of my first noticeable symptoms.

My doctor prescribes Provigil for me.

Without it, I can hardly get out of bed in the morning. It is a fairly new

drug, and has very few side effects.

It has been a lifesaver for me.

kristina

[Guest guest]

Max: the sleepiness you've described is what I had at the very beginning -

before I was even diagnosed. It was one of my first symptoms of something going

haywire with my immune system. It was so bad, it was almost like having

narcolepsy - especially if I was driving a car. In fact, I did have a minor

accident on an expressway in heavy traffic. It was

almost at the end of about a 3 1/2 hour drive and I had just been

struggling to keep my eyes open. At one point, I must have fallen

asleep at the wheel for no more than 2 seconds and skimmed a concrete

dividing wall. Nobody hurt, minor damage to my car but very, very

scary; and that's when I stopped driving except around town - at least until my

disease got under control.

I also had trouble concentrating. I love reading - have a book in my hands

whenever I'm not busy; but I got to the point where I'd read a page and had no

clue what I'd just read.

All these symptoms gradually went away as my disease was diagnosed and treated.

Joanna Hoelscher

[Guest guest]

Hi Suzanne,

I suffer from major fatigue most of the time, I have just restarted the Humira

last week. The fatigue is horrible, I spend most of my time in bed and/or

resting. I had to take short term disability at work, between the fatigue and

the pain I just can't function. I don't think my Rheumy is going to start me on

MTX due to my elevated liver enzymes. I nap daily and sleep through the night. I

wonder how much of the fatigue is from the disease and how much is from the MTX.

Lori in AZ

[Guest guest]

They had to cut my MTX in half because of my liver enzymes.  My fatigue has come

back full force. It was doing much better before they cut it...so I don't think

it is the MTX.

Suzanne

[Guest guest]

Hi Joanna,

I am exhausted all the time, I only drive when I have to more due to the pain in

my hands. I have brain fog very often, I don't remember conversations with my

husband, I also love to read but as soon as I start I get very tired and after a

page or two I have to stop and go to sleep. I am on short term disability now, I

am really thinking about filing for Social Security Disability. I am always in

pain or discomfort and always exhausted. I take Percocet for pain which helps

but makes me more tired. I am so sick of this, I don't know how I can help or be

of use to anyone like this.

Lori in AZ

[Guest guest]

I understand what you are saying about all of it. I can't say mine is from PA or

what has caused all of it. I had many birth defects of the pancreas, and

suffered with pancreatitis for years. My entire pancreas was removed in 2006. I

have an intrathecal pump ( pain pump) which delivers continuous morphine. I also

take routine and breakthru pain meds. I have to say that currently I am more

active than I have been in years because of the pancreatectomy. That said I

still still spend about 2-3 days in bed. This sucks, but it is the only life I

know and remember, it has went on since 1997. That said, I have done and seen

more things than I ever hoped too. At the ripe old age of 32 I was told to find

someone to take my only child, as my demise was impending. I am now 43 will be

44 soon, and was present at my only daughters wedding and at the birth of my

grand daughter, she is my " sunshine " .  Life isn't always the great blessing we

thought we would get.

It is easy to over look the good. Only thing I can say is watch for the little

things that take your breath away, Don't let yourself get so jaded by illness

you forget the beauty in a sunset, or the feel of the breeze when you are hot

and sweaty. There can be little gifts along the way, don't allow yourself to

miss them.

Atwell