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387767 tn?1345872027

Anyone else who doesn't feel like *doing anything*?

Hi, just a question about motivation I guess.  I can't seem to find much energy or even the mental drive to get anything done or even leave the house sometimes.   This disease is making me lazy and I was always a person who was constantly busy and active.  

Every morning when my husband goes to work he says to me *try to DO SOMETHING today.*  Sometimes I feel like smacking him!  It's all I can do to deal with the pain and fatigue from getting like only 3 hrs. sleep.  If I can make it through a day just kind of puttering around the house and maybe cook a simple dinner or do a load of laundry, to me that's a decent day.  I might take the dog for a 10 minute walk (that a big deal) or run to the farmers market or make some phone calls or pay bills.  But it's not enough.  I do feel bad that my husband gets stuck with a lot of work because I just can't do it, but he just doesn't seem to understand I'm not doing this on purpose.  I would LOVE to be *normal* and live an active life.

By the way, it's not just my husband who says things like this to me.  I get it from my sister and even my neighbors sometimes.  I'm tired of trying to explain and justify all my diseases.  I have more than fibro, I have arthritis and back and neck problems that create more pain.  If my back and knees were better, I could do so much more, even with the pain.  Any thoughts?
13 Responses
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Avatar universal
My doc has me on 200mg of amitriptoline. We started out at 20 mg & slowly had to add more as it wasn't working. Alot of people say they feel like a zombie the next day but we are all different. I have no problem taking the 200mg but it really does help me sleep. It doesn't help me fall asleep but I think it helps me stay asleep longer when I do finally fall asleep. I know some nights it takes me 3 hours to fall asleep but when I do fall asleep I get around 7 hours about 2-3 nights a week which is better than no nights. It is so hard to explain this monster to others as they just don't understand. My husband says I walk like an 80 year old women, which I tell him I can't help it. Or he suggests we do something and I say I just can't. His comment it then well you haven't been telling me how bad you are feeling so I figured you were feeling okay. My response is why sit and complain every day how bad I feel because nobody can help me, so I just grin and bare it. Don't know if this helps at all, but maybe ask your doc about it.
Helpful - 0
329994 tn?1301663248
Hi Cindee56,
I need so much sleep because I have CFS, but not Fibro. I know that my sister who has Fibro, she takes an anti-depressant that helps her sleep because she is the same way as you are. She is in pain too. I feel so bad for you.

Husbands - mine is similar. Before we were married, he would go to bed around 7:30-8:30. He gets up around 4am. He would always tell people, "well, I get up at 4am, that is why I am so tired" but he wouldn't tell them that he went to bed around 8pm, that is 8 hours sleep, lol.  I would go to bed around 11 or 12pm and get up at 5am, so I actually got only about 5-6 hours sleep compared to his 8 hours.  But he couldn't see that. It is kind of funny. You have to try and laugh it off!

Are you on any medications that would help you sleep? It sounds like that is what you need.  I don't think you have said what you are doing for your Fibro.  Hopefully, someone can come along with the same problem and tell you what they do. Good luck!
Helpful - 0
387767 tn?1345872027
Again, thanks for the comments.  I just want to mention about the sleeping thing.  Maybe I am the opposite because I actually CAN'T sleep.  It's not that I sleep long hours, my problem is that I can't fall asleep the middle of the night because of pain and anxiety.  Sometimes it's already 5 or 6 am before I finally so get any sleep.  Then I will wake up around 10 or 11, so the most I get is about 5 or 6 hours.  

My husband says to me *get out of the habit of getting up late.*  I could slap him!  I said well, if I don't fall asleep until 5 a.m. and then get up at 7, that's not even close to enough sleep so I HAVE to sleep till 11.  And even then, of course, I am tired and feel horrible all day.  And I am not one to *nap.*  I lay down, but I can't sleep during the day.  He goes to bed at 9 p.m. then brags about how he gets up at 5.  Big deal!  He's still getting 8 hrs!  Sheesh, husbands are SO annoying.  
Helpful - 0
329994 tn?1301663248
It is very hard to cope with this and then all the comments from other people. I was asked recently if I thought that my problem was that I "slept too much".  I couldn't believe it, but the problem is that people are not educated enough about these disorders and if they don't have it themselves, they don't understand. Not fair, but we have to be the ones to try and pass on what we are feeling, what the pain is, the extreme exhaustion, well, you all know, so I don't have to spell it out.  

Helpful - 0
Avatar universal
I READ ALL THE COMMENTS AND LADIES I THINK ALL OF YOU ARE RIGHT! ! ! ! !  I THINK WE FEEL THAT WE ARE RAMBLING ON BECAUSE ITS LIKE WE ARE TRYING SO HARD TO EXPRESS HOW BAD AND AWFUL WE FEEL THAT ITS LIKE WE CANT GET IT ALL OUT OR EXPRESS IT ENOUGH SO ONE WILL UNDERSTAND HOW WE ALL FEEL... AM I MAKING SENSE?  AND THERE ARE SO MANY FEELINGS AND WAYS TO EXPRESS ALL OF THE THINGS THAT ARE GOING ON THAT ITS LIKE WE CANT THIINK OF EVERYTHING THAT IS GOING ON AND ... WELL.... I DONT KNOW.  IT IS AWFUL THAT THIS HAS TAKEN AWAY SO MANY THINGS THAT WE ALL USE TO DO.  IT IS SAD ! ! !  AND I CAN RELATE WITH ALL OF YOU ABOUT THE HOUSE CLEANING AND NOT BEING ABLE TO GO TO THE GROCERY STORE AND ON AND ON AND ON.  WE CANT EXERCISE ANYMORE WE CANT STAND AND COOK LIKE WE ONCE DIID AND WE CANT GO OUT AND PLAY WITH OUR CHILDREN AND WE CANT EVEN SIT UP AND TALK TO ANY OF OUR FRIENDS OR FAMILY WITHOUT FALLING ASLEEP ON THEM.  I KNOW WE ALL FEEL LIKE WE HAVE BEEN BEATEN UP.... I FEEL LIKE A GANG OF PEOPLE  HAVE HIT ME OVER AND OVER AND OVER WITH PILLOWCASES FILLED WITH BARS OF SOAP.  WE ALL TRY TO DO THE LITTLE THINGS AND WE STILL HAVE ALL THE PAIN AND EXHAUSTION THAT GOES WITH IT.  I ALSO GOT TIRED OF EXPLAINING TO PEOPLE WHT I COULDNT DO THIS OR THAT AND THEY WOULD JUST LOOK AT ME LIKE I WAS JUST LAZY AND DIDNT WNT TO DO ANYTHING AND I REALLY GOT TIRED OF THE REMARKS FROM EVERYONE ABOUT SLEEPING ALL THE TIME.  THE SAME PEOPLE WOULD ASK ME OVER AND OVER ....WHY DO U SLEEP SO MUCH?  AND ITS LIKE I TELL THEM OVER AND OVER AND OVER THE SAME THING .... WHY CANT THEY GET IT IN THEIR HEAD? ! ? ! ? !  I JUST DONT DO IT ANYMORE... I DONT HAVE TO.  I MYSELF GET SICK OF LOOKING AT MY MESSY HOUSE AND NOT BEING ABLE TO DO ANYTHING ABOUT IT OR ANYTHING ELSE! ! ! !  I HAVENT SLEPT IN A BED FOR YEARS AND IT HURTS MY HIPS SO BAD THT I CANT STAND IT AND CANT LAY ON MY BACK CAUSE IT HURTS TO... IS ANYONE ELSE LIKE THAT...SLEEPING IN A RECLINER? ? ? ? ?
LIKE I SAID I CAN GO ON AND ON AND ON ABOUT THIS... JUST LIKE ALOT OF OTHERS,  I WISH IT WOULD ALL GO AWAY FOR US... THAT WOULD BE NICE ! ! ! ! !
WHAT I FIND A LITTLE WEIRD IS ... I NEVER HEARD OF THIS BEING SO BAD OR KNOWN AS IT IS NOW.  HAS ANYONE ELSE ? ? ?  NOW IM RAMBLING!  GOODLUCK TO ALL................ CATWOMAN
Helpful - 0
886844 tn?1241634047
All I can say is I know how you feel. Some days are way harder than others. I'm sorry that you have to go through this. I must admit tho that coming here and seeing that I'm not alone really helps! It makes me feel a little bit like we are all on the same page and that feels good since basically no one in my house understands. My husband once told me that "normal" people dont sleep until noon...well I know that I'm not normal, I need rest. Try not to feel too bad and just try to do little tiny things. Hugs and thanks for understanding with me!
Helpful - 0
387767 tn?1345872027
Thank you ladies for all the responses.  It definitely helps to get encouragement from people who understand.  I am slowly starting to accept that my life is not going to ever be what it was, and I'm thinking about what else I can do to fill the time that won't cause pain or make me too tired.

One thing I really miss is exercising, I used to do it all the time, and now ANYTHING I do causes pain in my back and knees.  But I have to make the best of it.  Even if I walk for 10 minutes with my dog, it's better than nothing.

I wish all of you a good day, and thanks again!
Helpful - 0
757597 tn?1315801812
I have some of the same problems as well. It is hard as someone else said. I would like my old life back too but we have to deal with the cards we've been dealt. My husband isn't the most understanding either. However he does have to shop more , do laundry and sometimes cook. All I can say is do what you can. I'm learning as the days go by. One thing a know for certain now If I push my self too much I'm down like now for days. I think it's important to find a balance. As for the neighbors and others I don't even try an explain. I just say I have an illness that;s chronic that's all. I try and think about the things I can still do and enjoy. I use my energy for those things. I prepare meals for two to three days and my 11yr old helps with dishes , sweeping and little things. Keep your head up and know we're here.

Gentle Hugs!!
Gee
Helpful - 0
329994 tn?1301663248
I can't offer any advice, but just wanted to say that I understand. I have CFS and explaining that to people is impossible. They all say to me "Well, I am tired too" and you just want to scream, because it is not the same but unless they have it, they won't understand. When you wake up in the morning and all you want to do is go back to bed for the day, that is not normal. and feeling like you got hit by a truck, not normal.
My sister has fibro and honestly, I didn't understand either. I believed her, but I didn't understand until I came on here and also was researching my CFS.  NOW, I know how she feels.
Maybe you could print out some articles for your husband to read?
You have lots of support on here, so come here when you need some extra support and vent anytime you want!
Helpful - 0
Avatar universal
I understand completely there are somedays all I want to do is sit on the couch I am lucky my husband is understanding. The reason for that is I used to ask him to rub my legs and lower back which are covered in knots and no matter how much he massage they never went away so he could feel the knots which made him understand why I hurt so bad. I have started Jucing and it has given me more energy to get thru the day I juice vegatables I wouldn't have believed if I had not have tried it but it works. I  haven't had brain fog as bad ethier it is nice. Now if it would just get rid of all the knots on my body I would dance a Zig!!!!!!!!!!!!!!!!!!!!!!!!
Helpful - 0
Avatar universal
I totally sympathize with you about this.  It seems that some days, it's all I can do to change clothes and brush my hair.  If I don't pace myself i'll end up in bed for two or three days.  Washing dishes is a huge chore now...before I was able to do the whole house in about 4 hrs.  I can't do it now despite the number of hours involved.

I'm fortunate in that my husband understands and does extra, but it does leave a guilty feeling with me.  I enjoy doing things myself...I just don't have the energy anymore.  We can only so much with this illness.  It doesn't help when it's plastered over the news that FSM doesn't exists or is all psychological because we have PTSD or are depressed.  I'm not sure how you can make others understand what it's like.  Have you talked with your hubby about FMS and how it makes you feel?  Maybe show him some of the articles about it so he will be more familiar with the symptoms.  I don't bother discussing my illness with neighbors because they won't understand anyway...unless they suffer or know someone who does.  

Until we get the acknowledgement that we deserve from the medical arena, we will continue to face the stigmas attached to FMS.  I hope that one day soon we will see this change.

Know that you are enough...just as you are, regardless of what anyone else believes.

Take care of yourself.
Helpful - 0
694135 tn?1299018983
Hi - I know exactly where you are coming from. By Friday I can't get out of bed to go to work. I work 7 - 3 pm Mon thru Fri and it kills me. I was dx with BC and had 3 surgs in less than one yr. Then several biospies and infections - this is how I ended up with fibro. My husband has been out of work (construction) since Nov. 2008. I MUST push myself everyday to go to work - I need my job. He does handle everything - the 2 dogs, cleaning, laundry cooking - we have been together for 20 yrs now. He knows that this is not me. These men out there need to remember who all these women were like before the fibro hit. We did not chose this - it choose us. I wish they could feel all the pain for one week, I think they would be awhole different then. I still wouldn't wish this on anyone. Good Luck & just ask him to remember - they forget like we do. Lots of hugs, Sunshine
Helpful - 0
606078 tn?1247264553
  Girl, I don't know what I could say to make things better. But, I'm going through the same things that you are. Right now tho I feel about half decent, so I'm not going to push it to hard. My hubby just left for the store with a list in hand. Since about Jan. this year he has done all of the grocery shopping or almost all of it. He doesn't mind at all, he enjoys going to the store.

  I don't usually mention that I have a housekeeper. Maria has been with us a long time, and she is part of this family. I thank God for her everyday, without her I wouldn't be able to get anything done. I take care of our bedroom and bathroom and Dave's office, and I try to do the laundry, if I can beat her to it.....lol

   I miss my old life, miss being able to get out and go where I want to go anytime I want. I have been fortunate that my family understand and they support me. My neighbors don't understand but I really don't care. They don't live with me and they don't pay my bills. I do take care of my cat boxes, and I feed my dog and cat babies.

   It's hard Cindee, damn hard! I get angry that this disease has taken so much away from me and my family. But I've learned that anger makes me ill because I stress myself out. I do apologize for rambling on and on. I do that at times. Take care.

gentle hugs
Angel
Helpful - 0
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