Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Fatigue is ruling my life !


  • Please log in to reply
21 replies to this topic

#1 georgette

georgette

    Senior Bronze Member

  • Members
  • PipPipPip
  • 58 posts

Posted 02 August 2008 - 11:34 PM

Hi everyone , I was just wondering how everyone here manages the terrible fatigue that comes with sclero , I am finding that the fatigue is making me dodge socialiseing , even a casual visitor that just pops in for a cuppa and a chat ,I find it exhausting , I even got to the stage where sometimes I dont anwser the phone as I just dont have energy to carry a conversation , ...I dont feel depressed ,just tired but I am a bit worried about how I am hybernating more and more , much happier in my own company , what do you all do to manage the fatigue , the only way I can manage it is to retreat ,but some how it doesn't seem healthy ....looking forward to see how you all deal with it .... hugs georgette

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 03 August 2008 - 12:35 AM

Georgette, I am getting a reprieve from the severe fatigue at the moment. Most of my friends and family come to visit. The coffee is usually on. Everyone gets their own coffee and cleans their cup or one couple will clean everyones cups or dishes when I am having issues. Family members know when I dissapear for about 45 minutes I am recharging and ask if I feel better when I return to visit. I usually say that I need to lay down for 45 minutes and I set my little kitchen timer. Everyone loves it here so they make sure everything is in order or help where ever they feel they can help. On days that I am extremely tired I tell everyone what is going on and they usually understand and stay home. I haven't ever had issues of not wanting people around or to visit with others. I like my own company but I also like people around. If I were to get to the point of not wanting people around then my husband would know something is wrong and so would I. I would call that a slight form of depression if it were happening to me. People can have mild depression because situations in their lives change. They don't feel well. They are extremely tired. Being tired alone could make a person get depressed after a while. I am glad that my fatigue comes and goes. It doesn't stick around for longer than two weeks. I can handle that. Any longer I would be seeking help, because I wouldn't want to feel down, or not want company. I do have to fight fatigue or sleep when the couch becons. All for now.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 03 August 2008 - 04:12 AM

Fatigue is the single most difficult symptom for me to cope with and some days I really do find it difficult. As Sheryl said, the symptoms you describe do sound a bit like depression. It wouldn't be a bad idea to talk to your doctor about this. My own doctor recently increased my SSRI (fluoxetene) to see if it will help. Plaquenil is supposed to help with the fatigue, but it apparently can take up to six months before it makes a difference. I am still counting.

Our page on Scleroderma Fatigue may have some useful tips for those of us who suffer from fatigue:

Mild to extreme fatigue is a common symptom of scleroderma. It affects your daily activities and overall quality of life. Fatigue is not in your head. It is caused by physiological problems as well as psychological problems associated with the disease or other symptoms of the disease.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 bloominacres

bloominacres

    Bronze Member

  • Members
  • PipPip
  • 10 posts
  • Location:Everett, WA

Posted 03 August 2008 - 04:25 AM

Hi Georgette,
My fatigue usually comes and goes like Sheryl's. It is with me now though as I needed 3 naps just to get through the day yesterday. My biggest issue with the fatigue is feeling guilty not getting anything done.

I live by myself so that guilt is self-imposed. My friends can usually tell when I am having the issues and all offer to help out. I rarely call on anyone for help though, though I really know I should. It is a defense mechanism of mine. Kind of not wanting to let go of what I can do. I just do it at a snail's pace.

I am on Plaquenil and have been for 3 years. It did take six months to kick in and help, though I am finding it seems not to be working as well as previously as the joints are killing me also.

You may want to consider talking with someone if your fatigue is getting to the point of social hybernation. It is perfectly OK for a few weeks maybe longer for some, but after that may need the added boost from talking with a therapist and possibly medicating, even if just for awhile.

Good luck Georgette and warm hugs,
Mary B

#5 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 03 August 2008 - 04:40 AM

Some days are worse then other for me.. But I have notice that years ago I was alot like what you mention. Now that I am on lyrica for my fibro pain I have noticed that I have more energy now. I do like that. I also been doing more with the kids. Everyone has noticed that. I really dont know what is going on. but I like it. Don't get me wrong some days I just want to sleep but it not 45 min like sheryl its 2 to 4 hours or more. Sam
Sam

#6 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 03 August 2008 - 04:46 AM

Hi Georgette, I feel like you do at times- sometimes even a conversation feels like too much effort and I find myself avoiding or not enjoying things I would normally enjoy. I do think that for me it is possibly a mixture of fatigue and mild depression, but don't know whether the depression is caused by the fatigue or vice versa. It has got to the point when I have wondered whether I should talk to my general practitioner about it but has never lasted more than 2-3 weeks at a time, so haven't so far but would if it persisted for longer. Like Sheryl, when I people round or am out at a social event and I feel really washed out, I excuse myself and go for a rest, and reappear later.
Hope you are feeling better soon
Lizzie

#7 annkd

annkd

    Silver Member

  • Members
  • PipPipPipPip
  • 172 posts
  • Location:Sacramento, Ca.

Posted 03 August 2008 - 05:44 AM

I am getting to understand the difference between the fatigue I suffer from - physical and psychological. Sometimes a combination of both. There are days that I really need to be alone but if that continues I usually talk to someone (usually a dear friend that also has sclero). Right now I am really having trouble with pain in my hands and legs. I can't do a thing. My husband is on a river rafting trip and I couldn't even drive up with him... let alone get on a raft. I get so fatigued just dealing with the pain. It is exhausting. So for today, it's a good book and hopefully some good cooking shows on T.V. Hang in there and listen to your body. Get someone to talk to if your think you feel depressed. Hugs, Ann

#8 Alice02

Alice02

    Senior Bronze Member

  • Members
  • PipPipPip
  • 75 posts

Posted 03 August 2008 - 05:48 AM

Hello everyone, I too suffer from fatigue even though I am on Plaqenil 400 mg a day. But I do blame it on the weight I put on from taking depression medication (MIRTAZAPINE) But it sure make one’s life miserable and hopeless.


Much love, Alice

#9 Purr

Purr

    Silver Member

  • Members
  • PipPipPipPip
  • 264 posts
  • Location:Kokomo IN

Posted 03 August 2008 - 06:37 AM

Georgette,

My story is "almost" exactly like Mary B's (Bloominacres). The 'almost' part is that I take methotrexate. My routine the last 3 days has been to get up about 8:00 AM, feed the cats, read the paper, and play on the computer for alittle bit. Then, about 10:30, I lay down and take a nap for 1 to 2 hours. The afternoon is for errands, housework, or reading. Sometimes I go for a couple weeks without needing a nap. Not very often though.

The fatigue was much worse the first few months after I was diagnosed. That was in 7/07. It's improved alot since then.

Christy
Love makes the world go around!

#10 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 03 August 2008 - 08:28 AM

When I get fatigued, I just lay down and take a nap. Since my amputation and hospitalization, I becoming more and more active and I think that contributes to the tiredness. If a nap is 1 hour or 4 hours, done deal and I'm up like a bunny. Could be up at 3 AM, but so what; thank goodness I don't have to go to work!
Tru

It is what it is...........

#11 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 03 August 2008 - 08:29 AM

The way I deal with it is to schedule daily rests. It isn't unhealthy to rest your body when it needs it. I don't always answer the phone when it rings. I just check the messages later. Here are some things that make my day easier. I have a stool at my washer and dryer for when I unload the clothes. I have a shower chair in my shower stall. When I go out if there is a scooter in the store I use it. I get my husband to do most of my errrands. Don't feel guilty for resting. I think fatigue is our bodies telling us to take a rest.
Take care,
Nan

#12 smurfette

smurfette

    Silver Member

  • Members
  • PipPipPipPip
  • 148 posts
  • Location:PA, USA

Posted 03 August 2008 - 08:48 AM

I am so sorry to hear about your fatigue. I totally understand it though. This disease can turn our lives upside down and we just have to do the best we can. The first thing we can do is to not punish ourselves by feeling guilty for what it does to us! We have to do what we can do. Do talk to you doctor and make sure that there is not something that can be done. Are your meds contributing to your fatigue? Can their times of ingestion be changed or their strengths? Do you need an anti-depressant? Sometimes things need adjustment, sometimes it is a new med to be added or sometimes it is a period of absolute fatigue that just needs to be catered to.

There are some days - when I don't go to work that I barely get out of bed. I have been up late the night before because of reflux and assorted discomfort and I nap on and off all day! It may continue into the next day. I feel like I live in my nightshirt. My poor husband must get tired of looking at me in my gorgeous couture. It may be a struggle to socialize, but sometimes I just pull myself together some evenings and have dinner out with friends or family. There are occasions when I am sorry I did it because I get sicker with worse reflux and fatigue but it was still ok to be out. There are other occasions that it made me come out of myself and I feel like I needed it. I kick started me out of my cycle of fatigue. Other times I am a disaster and wished I never got out of bed, let alone the house.

Take heart, we all deal with it and there are many ways - (medical, psychological being just two of them) to help you deal with your fatigue. I hope you feel better and stronger every day!
Smurfette

Chocolate, It isn't just for breakfast anymore!

#13 georgette

georgette

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 58 posts

Posted 03 August 2008 - 11:03 AM

I thank you all for your input, I will keep it in mind that it may be mild depression , but I must say when left to my own space I perk up ! but I guess thats because I can lay down and rest when I want , I guess it doesn't help that I have fibro and crps as well as sclero I think they all add to the fatigue , I think my biggest frustration and quite possibly why I am isolating is probably that I dont think my friends and family quite get it , I dont think the gt how bad the fatigue can be , eg I had to go to the store to get groceries ,when I was there I was feeling the tireness setting in I get a sore throat and a little cough which are symptoms that tells me to rest ,as soon as I do both symptoms go , but I just got in the door at home put stuff away and layed on the couch and a friend dropped in ,meaning well I told her I was feeling tired even though she made the cuppa teas , I was too tired to pick it up or sit up to drink it but she just kept on talking , so I told her again that I wasn't really with it and needed to sleep she still took another half hour to say her good byes , I ws exhausted , she;s a friend of 30 years , but I think thats why I find it easier to avoid everyone because when I tell them I'm tired and need some time out they dont get it , but any ways thanks for all ya input , I will watch and see if its depression or just pure frustration cause noone is listening or a bit of both thanks georgette

#14 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 04 August 2008 - 06:02 AM

Hi Georgette!

We're listening and we get ya! My fatigue was worse at the onset of scleroderma. After 8 months, I was a professional couch potato 85% of the day. Now, it's much better. I still feel tired at times and nap at least once a day. I hate to say I avoid most social events because if they are long and drawn out, I'm exhausted at the end. Sometimes I find myself coming up with excuses why I can't go. Like yesterday was my nephew's son's first birthday. Both sides of his and his wife's family are huge so I knew there would be at least 150 people at this picnic. For me that's too much socializing and I would pay for it the next day. I honestly prefer smaller gatherings where people know me and my situation. With it being summer and so many invitations to parties, it becomes expensive. Gifts and gasoline add up. I do like going out and having company, just not excessive. As far as drop in's, I prefer a call ahead of time so I can freshen up a bit.

If you're feeling tired, take as many breaks as you need. We all have our stay in pajama days, feet up and scruffy hair. It's what our bodies want us to do.

We hear ya Georgette!


Pajama Day Hugs,

Razz
:blush:
Live well, Laugh often, Love much

#15 Nina

Nina

    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 04 August 2008 - 12:32 PM

Hi all ~ boy do I understand the fatigue thing. And the part where your friends and relatives just don't get it...
I had problems with Fibro and GAVE (watermelon stomach) where my hemoglobin would drop as low as 6 ~ yet still, there were friends and relatives who just didn't understand.
I'm afraid I expected to feel YOUNG again after my operation (I had a section of my stomach removed) ~ now, even though my hemoglobin is up to 12.6 I STILL feel tired. In fact, I fell to sleep at work just today. I only work three days a week from 8 a.m. to 2 p.m. I have the perfect job and I love it. I could NEVER work full time ~ and now I know that.
Anyway, I guess I just want to say I understand and I wish I had some other suggestions, but listening to your body is by far the very best thing you can do. I also isolate, in spite of being on Cymbalta (four years now). I think having to explain my fatigue often makes it not worth going out ~ so I stay home and rest ~ like my body wants me to.
Glad you posted, and we all got to chime in. Makes me feel better that almost everyone deals with this nasty pest ~ fatigue.
Listen to your body ,~
Much love,
Nina (DE)

#16 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 04 August 2008 - 06:04 PM

Nan:

I know when I'm overdoing it; I could feel from the neck to the middle of the back begin to arch and ache. That's the time I'll sit and take a breather from whatever I'm doing.

I had the washer/dryer moved from the basement to the kitchen (thank goodness I have a huge kitchen). Now I realize I should have done it years ago, just for the convenience from when the kids were little and there was so much laundry! I also keep a counter stool in the kitchen to sit on when cooking at the stove for long periods or just meal prep in general at the counter tops. I also had the plumber put an automatic water feed on the boiler so no more going up and down the stairs to check the water level. Still waiting for my son to come over to move the modem and router upstairs for the computer so I don't have to venture down the steps to reset them after a good storm.
Tru

It is what it is...........

#17 Karenlee

Karenlee

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 05 August 2008 - 03:02 AM

Yes, I do occasionaly feel super tired for no good reason. And to make matters worse, lately I've been exhausted all day and up and awake all night.
Since the UCTD I think the fatigue from the tightening takes it's toll just living normally day to day, and the automatic strain from the tightness must be causing it. My neck has been particularly tight the last few weeks and I can literally feel the CT and tendons pulling like tight rubberbands right thru my skin. Hopefully the plaquenil will bring releif from that at some point. I am 3.5 months on it, and don't feel much help from it yet. Can't even bend down enough to paint my toenails. :(

So, I do what is necessary, like making the bed, fixing hubbys lunch, grocery shopping, and making dinner. And other misc things like laundry and dishes. But I try to spread it out and not do everything at once. The one thing I find very difficult is cleaning the bathroom as that involves a lot of bending and crouching on my knees. And the scrubbing does a number on my hands.
Maybe I'll call a maid service next time :D

#18 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 05 August 2008 - 11:21 AM

I have noticed that I am subconsciously planning my day and trying to get things done when I know I will be up to the challenge. This is usually right away in the morning so I try to get what I need done right away. Then I know that around 10 or 11 in the morning I can have my first rest. Then when it's time to make hubby's dinner I am subconsciously eagerly awaiting my afternoon nap. I am seeing that on some days this can be the entire afternoon but I have quit trying to fight it. I used to fret and kick myself for not getting anything done but I have come to realize that if this is what my body needs then I do it. I have gotten better in realizing that things will wait and the world won't end if doesn't get done right now. This is pretty hard for a perfectionist to do but I am trying. Some days I win that battle and some days I don't. I have also realized that I can no longer mow the lawn and have reluctantly relented and have hired the neighbor boy to do it. I have tried to just mow the front once and while and pay dearly for it so have quit doing it. I know what you mean when it comes to socializing as I have actually had people tell me that I'm not very engaging and ask if I'm ok. I just tell them that I'm really tired and not feeling so well. I feel bad but I can't help it. I can honestly say this fatigue thing lately is really kicking my behind and I'm trying to do the best I can and trying to quit fighting as it doesn't do any good anyway.

Warm hugs,

Peggy

#19 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 05 August 2008 - 12:20 PM

You know what? You guys are awesome!!! All of your comments have not only I'm sure been helpful to Georgette, but to me also. Fatigue is one of my BIGGEST problems. I had my rheumatologist appt yesterday and spent the majority of my time talking about that. You guys were more helpful!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#20 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 05 August 2008 - 08:01 PM

Maybe we're missing the whole thing; we're just sleeping beauties :lol: . What's not to love? :)
Tru

It is what it is...........