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Adrienne Dellwo

'Stop Before You Want to Stop' With Fibromyalgia & Chronic Fatigue Syndrome

By November 12, 2009

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Pacing is one of those fundamental things that I think all of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) struggle with. When we don't take it easy enough, our bodies eventually force us to take some down time -- by cranking up the volume on symptom after symptom until we can no longer function at all!

A reader recently left a great comment about pacing, especially around the holidays, with some advice that I certainly will try to keep in mind -- it's one of those simple things that can have a major impact on your life. Lucy wrote:

"Stop before you're ready to stop. If you go till you're too tired to do more then you'll crash. When you think 'I'll just do that 1or 2 more things, or visit 1or 2 more shops, or go up 1 or 2 more aisles' - don't! Thinking this is your cue that you should stop - works for me. Keep it simple. Decorate - but not as much, celebrate - but not as much, cook if you can - but not as much." -Lucy

That's a great approach to the holiday season and to your everyday life -- stop before you're ready to stop, and keep it simple. Thanks, Lucy, for sharing your wisdom!

What helps you pace yourself, and know when to say when? Have you been able to pare down your responsibilities and expectations to be more realistic? Do the people close to you understand why you have to do this? Leave your comment below!

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Comments
November 12, 2009 at 5:55 pm
(1) Jenny says:

I really pay attention to physical cues, like weak and shaky hands or muscle twitching happening anywhere in my body. These things seem to happen before I notice the pain and fatigue rushing in so as soon as these happen I completely stop and rest.

November 13, 2009 at 4:15 pm
(2) Cherish Hellfire says:

Never knowing when to say “when” to physical activity is one of my greatest challenges and one of the biggest sore spots in my new relationship. I’m always so excited when I finally feel good enough to take complete care of my fiancée, the 2 dogs, and our new cockatoo, instead of just getting by with the bare minimum. It’s a heady feeling, being able to do the things that most other women take for granted. Running myself down comes all to easily, and I’m fooled by the times that I am able to do what I expect of myself without the “crash”. More often then not, the crash is coming anyway. I still need to learn tricks to make it ok to slow down while I’m still feeling good. Right now I’m, in a situation where I am suffering a new disability in the form of torn rotator cuff, which makes it challenging to do most anything. I rotator cuff was torn one day a few weeks ago when I was having a particularly lengthy good spell, and I pushed until it became a bad spell, and then fell because I did. Now the recovery is going to take a long time, and my relationship is stressed to the limit, all because I just didn’t know when it was time to slow down. If my story does nothing else then provide a cautionary tale to help you find a way to say “when” when you must, then maybe it will help you find motivation to learn a trick or two to learn how, as I know must.

November 13, 2009 at 5:11 pm
(3) Annie says:

Although I sometimes miss seeing the stores decorated and the music playing in them, I now have learned to do the bulk of my gift shopping on line. I try to have it finished by the end of October, so there is much less stress for me around the holidays. It’s easier on me and leaves me more time to decorate my home.

The only thing I have to go out for is wrapping paper and ribbon and I do try to do that early.

November 14, 2009 at 5:09 pm
(4) Misha says:

This is my biggest problem, except I usually work until I cannot work anymore. I am presently in the middle of a crash that has upped the volume (I like that description) on everything, so that even quietly sitting doing my emails is making my eyes water with pain. Yep – I’m going to bed as soon as I’ve finished this. Please, you younger sufferers, especially, don’t be an idiot like me (there’s no idiot like an old idiot – I’m 58), listen to your body. When you have Fibro/CFS, you are NOT normal at any time. If you are a compulsive worker and have any advice, I’d love to hear it. I always swear I’m never going to get this miserable again and everytime there is work to do, I try to work until it’s finished. I don’t seem to be able to leave a job half finished.

November 14, 2009 at 6:23 pm
(5) LuAnn says:

I always use a timer when trying to get things done. I never rely on myself to pace my workload as I have an ‘invincibility’ shield that kicks in when I feel good enough to get things done. I set my timer for 15 minutes and then change either to a rest period or change of activity level or physical/mental output. This could be as little as doing dishes for 15 minutes and then filing paperwork for 15 minutes.

I’ve been dealing with chronic pain/FM/arthritis for 25 years now but only in the last 5 years quit working due to osteoporosis w/fractures setting in. It’s taken me this long to figure out that as much as I’d like to push through the pain I’m only making things worse when I dol

November 15, 2009 at 2:28 am
(6) Misha says:

The timer idea is great. Thank you. I know what you mean about the arthritis. I started developing bad arthritis about 18 months ago and had to quit my job teaching high school. I was a full-time care-giver to my sick little husband and then he passed away a month ago. Grief seems to add to the physical pain too. Lost my job and my income, then my husband and my pain levels are just astronomical despite heavy painkillers. Sigh. I will try the timer though – I have one with a nice loud bell. :o )

November 16, 2009 at 1:15 am
(7) Tammie says:

“Stop before you’re ready to stop.”

Good advice for some….unfortunately I’m physically ready to stop before I ever get started!

November 16, 2009 at 6:54 pm
(8) Misha says:

LOL – love it!!

December 4, 2009 at 1:30 am
(9) Carol says:

It is a big challenge for me when I feel up to doing anything is “knowing when to stop” I have not learned that one yet. I have tried the 15 minute timer but when it goes off I tell my self just a few more minutes, then before I know it I am crashing. will I ever learn.

December 5, 2009 at 7:52 pm
(10) LifeInMyPurpleHousecoat says:

After living with Fibro for 20 years, pacing is still not one of my strong points.
Actually, I just came home from shopping and my body is Throbbing. I went to one store and wanted to go to one more. My friend asked if I was ok to do so and I replied YES. I was so excited just to be out.
I should have listened to him and quit.

What can I say but eggnog and a tiny bit of rum is helping but that is not the answer for everyday but for now, it will do.

I buy alot of things from The Shopping Channel and they will ship it right to wherever you want it to go. I am going to Toronto for part of the Holidays and when I arrive, some of the gifts will already be there. Last year, I had to pay extra at the airport because the luggage was so heavy. This year, I am travelling only with the light things.

Good Luck Everyone.

December 28, 2009 at 10:02 am
(11) Kathy says:

Here’s one for ya guys. How about always being ready to stop but can’t ? I’m 47, I think, { post holiday fog } and am raising 8 year old twins alone, after raising 3 other children alone. The person I used to be if she were here would be kicking me in the ass in disgust and telling me to just knock it off and get up and stop this crap, but Iam slowly learning and accepting that she’s “not” here and fearing her repremands less and less. This sure is a slow process though, but reading all the posts gives you hope if others can make it through, maybe I can too. I wish I could stop apologizing to my little ones for not being the mom they deserve and feeling that I’m not. I have a long way to go, but havent given up yet, though I think about it daily. I’m so tired sometimes I cant even make it to the doctors to treat my conditions, it takes all my energy just to make sure my little ones have what they need. They say, just take it day by day but for alot of us it’s more like, minute by minute .Well, restful holidays to everyone, and a safe and happy new year, and quick spring !

December 10, 2011 at 4:17 pm
(12) Tammy R says:

Life in general wears me out. Add the Christmas season into my daily challenges and I can be beyond exhausted before my day is half over. And this year has been a definite challenge. Our Christmas tree and decorations were lost in a flooded basement incident so I have been scrambling to replace 30 years of decorations and memories (can’t be done). Frustration and an overwhelming sense of failure can take over quickly. I have enough failure in my life without worrying about replacing what can’t be replaced and buying just the right gifts. I used to look forward to the holiday season. Now I dread it and hope it passes by quickly.

December 16, 2011 at 10:35 pm
(13) Nikki says:

Yes, I so agree, I felt fairly good for 2 days, so I cleaned and wrapped gifts….then on the third day my neck hurt so bad I was in the bed, then that turned into a full blown flare. I stayed in bed 2 full nights and a day. Did I say we were looking for a car to replace the one we just sold… ugh. Happy Holiday!!!

December 24, 2011 at 5:31 am
(14) Heather says:

I’ve definitely been overdoing it this holiday season, and the presents will still be mailed late. I just have to keep reminding myself that I can’t do everything at once, as much as I’d like to. I was raised believing that weakness was failure and I’ve struggled against that for all 16 years I’ve had CFS. I try to remember that I need rest and it’s not bad to give myself what I need. Best wishes to everyone!

December 25, 2011 at 9:40 pm
(15) Susan H. McIntyre says:

I definitely overdo it, as I am used to being the “responsible good girl”. I am learning to let things go, but it is difficult. Now I decide what is worth a fibro flare or not. I went to Christmas worship and stayed awake to celebrate with my husband and 2 adult children. I may pay today for it today, but it was worth it! Grocery stores are not. Housework is not. Too many phone calls are not. I am at least learning what is important enough in life to extend. I guess that’s a start, huh!

December 17, 2012 at 12:44 pm
(16) Jo says:

I often stop before everything I need to do has completed. This has often caused arguments with my family as they don’t seem to grasp what my Fibromyalgia is about regardless of how many times it been explained. My children have called me lazy and selfish. But even through all this I still stop before I become too exhausted

December 19, 2012 at 6:31 pm
(17) Kristina S. says:

Reading all your posts almost brought me to tears. I see a bit of me in each one of you. I too have beat myself up for not knowing how to pace, for pushing too hard, for not being able to kick myself in the butt and “just get over it”. There are days when I feel almost enraged when people tell me to just rest and I’ll be fine. With Christmas parties looming and all the family noise, though happy energy, it drains me in ways I can’t explain. I am so tired of trying to get people to understand yet I know they never will. My husband is almost in tears some days as he watches me suffer and is left in bewilderment and sadness.

All I can say is thank you for your honesty and bravery in sharing your experiences. It means so very much.

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