fatigue and RA?

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lucysgd
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Date Joined Jun 2008
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   Posted 9/7/2010 3:46 PM (GMT -7)   
Hi - I've just recently started looking for info on RA - usually am on the Lupus forum.  Recently diagnosed with mild RA, after a dx of UCTD with a strong suspicion of Lupus. I also have fibro.  My worst problem right now is fatigue.  Pain is an everyday issue, some days better than others - but the fatigue overrules even on a better day.  If I can muster energy for a project or activity, I always pay for it later.  Is this normal for RA?  Most people seem to talk about the pain aspects of it - not so much fatigue. 
 
I seem to be relatively home bound for the most part.  My husband has taken over grocery shopping and many other tasks.  Socializing wears me out.  I don't have the energy for creative projects or other things I once enjoyed.  I see my rheumy at the end of October - which seems far away.  But I don't want to be a whiner, but I feel so stuck.  Does this sound usual for flare with RA ?
 
Lucy 

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 9/8/2010 2:31 AM (GMT -7)   
Hi Lucy,
I suffer fatigue too, not sure if its from the diseases or the meds. Its horrible how it affects 'normal' living. I describe my fatigue somedays as having carried an extra person on my body with me all day (hope that makes sense).
Even when I have my diseases under control, a little better ,I still need a nanna nap most days.
Sorry you feel like this too.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 9/8/2010 3:42 AM (GMT -7)   
Hi Lucy

I suffered 6+ years of "sciatica"-type pain before being diagnosed with psoriatic spondyloarthritis only three months ago. It hit me hard about 4 months ago and I ended up in my family doctor's office, literally in tears. Ever since, not a day has gone by that I don't feel fatigued.

Somehow I manage to soldier on. Apart from only a very small number of trusted friends, most of the people I know and work with would not even know that I had a disease at all (and those that do, only usually see the bright, happy me).

It's only when I get home, at the end of the day, that it just hits me and, some nights, I'm completely out for the count. Tonight, for example. After we had finished dinner, I found myself lying flat out on the bed for a quarter of an hour. I just could not move, I was so tired. Not sleepy; tired.

Lately it's been getting on top of me, and I'm considering leaving work and stepping back into the "stay at home mum" role. At least until I get myself into a better place, physically.

I completely crash almost every night. After I tuck the last little man in to bed (I have three sons) I sit down on the lounge and do not move. I am exhausted.

Some days are better, and some are harder, but every day there is fatigue.

I was extremely interested in your story. You're right, you don't hear a lot about the fatigue. I'd love to find out if others experience the same kind of thing.

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/8/2010 8:14 AM (GMT -7)   
Hi Lucy,
 
Yessssss! Fatigue and tiredness seem to rule my life! I'm not currently taking any medications for RA, and have been off of MTX actually since June according to my script records. So for me it is more of the RA that is causing my tiredness. I also have the joint pain/stiffness along with a new spine pain symptom, but would much rather deal with the joint pain over the fatige/tiredness. I feel as if I'm wading through quick sand, and can't seem to reach the other side. Since your appointment isn't until October, there is nothing wrong with giving your doctor a call ahead of schedule. I see mine in a couple of weeks, so I'm trying to hang on.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/8/2010 2:31 PM (GMT -7)   
You need to learn to count your spoons!

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 9/8/2010 5:11 PM (GMT -7)   
I like the spoon theory very much, what a great way of explaining your energy levels.
Yes Lucy, being tired and oh so tired is very much a part of RA. When I'm flaring I feel full of lead, all my bones become so heavy, even breathing seems to take effort. I can feel nauseous too, it can affect your liver and kidneys, your heart as well, so YES you get tired.
Ring your rheumy they may be able to help the fatigue. Especially if its limiting you so much, you're not whining you have several serious diseases at once, you didn't ask for them. Don't feel guilty. You have to look after yourself or you will have no energy left. Ring your rheumy and good luck, golitho

MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 9/8/2010 9:56 PM (GMT -7)   
wow - LOVED the spoon analogy!  Thanks, James.
 
What an eye opener. 
 
I'm such a noob.  At the moment, there is no counting of spoons going on here.  I'm really just continuing on about my life as though nothing is wrong with me, and I'm draining myself before I even get home from work most days.
 
 

Post Edited (MELttdown) : 9/8/2010 11:03:51 PM (GMT-6)


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 9/9/2010 8:36 PM (GMT -7)   
Thanks all, for your responses.  I love the descriptions (feeling like you're carrying another person around all day, walking through quicksand....etc.)  I can so relate.  I've often referred to it as slogging through mud, or plodding.  I've had fibro lots longer than the autoimmune stuff....and it seemed easier to manage because it wouldn't last for weeks on end (months?)  I could eventually get back to being able to expend energy without crashing.  That hasn't happened for longer than I care to think about
 
But.  Today was a little better - managed grocery shopping w/ hubby in tow, plus another appt., plus a slow walk around the block.  Will see what tomorrow brings.  My hat is totally off to anyone trying to manage the fatigue and pain and children AND a job! Honestly, I don't know how you do it.  My kids are grown and I'm not working now - much as I'd like to.
 
The spoon theory is a wonderful description - I first heard about it when I was dx'd w/ fibro.  Lately the spoon drawer is just slap empty.
 
The link below was helpful also.
 
 
Good sleep and energy to all!
   

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/10/2010 2:03 AM (GMT -7)   
Lucy - if you find you don't have any spoons, I find the best thing to do is root around and see if you can find any knives or forks. I know it isn't ideal, but any cutlery is better than none.

I had a spork once, WOW was that a good day or what!

Having RA with Fibro especially sucks as both cause fatigue, I didn't know what had hit me when I developed fibro about 5 months ago (only confirmed 2 weeks ago!). I've had to quit one job because it was too painful, and making it in 5 days in a row for my other is an absolute killer. I can't wait for college to start again so my day will be a little less hectic!

What are you taking for the fibro? I recently started on Amitriptyline and have noticed a massive improvement, initially at least. It's starting to decline against now, but at least it has been a break in the cycle :)

tke care.
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 9/10/2010 2:07 PM (GMT -7)   
Hi Lucy - your fatigue could be from one of many sources. Fibro can cause alot of fatigue. RA can certainly cause fatigue. My rheumatologist told me that once we got the inflammation under control then I wouldn't be so tired. And guess what????? He was right. My daughter (age 15) has Chronic Fatigue Syndrome, Fibromyalgia, and Postural Orthostatic Tachycardia Syndrome. She is basically housebound - the fatigue is unbeleiveable. We haven't found anything yet to help with the debilitating fatigue. I wish you the best.

Kim

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 9/10/2010 2:08 PM (GMT -7)   
tongue  Thanks for the chuckle, James!  And you are absolutely right, any cutlery is better than none.  As Picasso said, when I don't have red, I use blue.
 
I'm sorry you are dealing with Fibro as well.  It's a double whammy that complicates and aggravates whatever else you are trying to cope with.  I tried Nortriptyline (sp?) and Neurontin for Fibro - neither did me any good.  The best fibro "medicine" for me was regular exercise.  A herniated disc put a wrench in that and then as I was trying to get back on my feet, the connective tissue/RA stuff started in.   So that "Rx" is very hard to come by these days.  I try to get a walk in, but if the pain doesn't act up the fatigue takes over.  You know, right?
 
Recently experimented with exercising in a pool - but found it was too exhausting to do the whole showering, toweling dry, changing,etc. after mild exercise in the water.  Put me out for another week.  Plan B. Or F.  Whatever.
 
Best of luck with the meds and I hope you get an extension on that break in the cycle.  I should confess I only tried the Nortriptyline for a week or so.  Gave me nightmares, and I was started on it to improve my sleep.....
 
Lucy
 
 

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 9/10/2010 2:15 PM (GMT -7)   
Hi Kim - just saw your post.  So sorry your daughter is dealing with all that! - especially at such a young age - such a heavy load - and hard on you, too.  I agree that the inflammation is a main culprit - and will be talking to my rheumy about that very thing.
I don't like taking meds, but the Plaquenil doesn't seem to be enough.  What did you find that helped you?
 
Take care, and all the best...
Lucy
 
 

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 9/11/2010 1:43 PM (GMT -7)   
The fatigue can be so bad that I am sitting in my chair with the refrigerator in sight but in the next room really thirsty and needing a drink, and I just sit there balancing the tremendous effort it will require to get up and go to the fridge with the need for a drink. I also plan what other errands can be done without adding steps to that trip-can I grab a granola bar to serve as my snack later on my way back from the fridge-or did I goof up and put them all away.


By the way, plaquinel took care of most of that fatigue for me nothing else has ever touched it.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/11/2010 3:19 PM (GMT -7)   
Oh, yeah, sjkly - that is it in a nutshell - well said.  
 
At night, too, I'll wake up parched and in serious need of a sip of water, with a glass of water sitting there on the nightstand right next to the bed, inches away from my head.  I'm awake - that's not the problem, but mustering the energy to roll over, and then raise myself up enough to reach out and hold onto the glass long enough for a couple swallows without spilling, often is. 
 
There really is an awful lot of negotiating, estimating and calculating going on inside our heads just to do the simplest things on those bad days.
 
Nice to know others understand, but sorry you do.
 
 
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