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Exhaustion


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#1 JJ-Knitter

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Posted 06 March 2008 - 01:11 PM

Hi everybody,

I've recently been hit with my first experience of something that goes far beyond just being tired. It's been going on pretty constantly for about 6-8 weeks, with just the odd good day. Any ideas on how long this sort thing is supposed to last and what you can do to make it a bit easier to cope with or hasten it out the door? My doctors have pretty much decided it isn't medication related.

JJ

#2 MaryFanPhilly

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Posted 06 March 2008 - 01:32 PM

Hello JJ and sorry for your problems... I too had serious fatigue problems especially when the disease first became active. It hit me pretty hard. I asked the rheumatologist what could I do to help it and he said.... take naps. At first I was offended but then I DID start taking naps and I just do it now... I listen to my body and I feel better. If I have a bad day I stay in bed, and what gets done, gets done and if it doesn't, well, too bad. I know it sounds stupid but if we listened to our bodies more, we'd all be better off. Keep warm and happy napping.. love Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#3 RememberingToSmile

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Posted 06 March 2008 - 01:57 PM

I don't think anyone really understands the severe impact this kind of fatigue can have, until they go through it!

At my best, I can work and get home tired and completely worn. At my worst, the effort of eating and dressing in the morning sends me back to sleep a couple hours. So far, these bad times have accompanied other disease symtoms and a medication change/increase eventually helped. It is a good feeling when the medications kick in. The worst episode I had lasted 12 weeks.

I've heard Plaquenil works for some people - didn't for me , though (I was on 400 mg/day for 18 months).

-RTS

#4 peanut

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Posted 06 March 2008 - 02:27 PM

Fatigue can be so hard. When I was working I would fall asleep at my desk and wouldn't even know it... till my co-workers woke me. Thankfully I wasn't fired, but had a few close calls. My worst was a few months ago. It seemed the kitchen and bathroom had moved miles away from where I was, which was usually the couch or bed. The vit-B shots I always talk about helped me kick that bout of fatigue.

Take care of yourself and don't worry if things don't get done around the house.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 Annie N

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Posted 06 March 2008 - 02:52 PM

I also have fatigue, and I also found that vitamin B is great. I don't digest the oral kind so I get injections. When the fatigue was at it's worst, I had blood tests and was found to be severely anemic and was put on iron pills, which I also still take.
None of this would have happened except that my husband made me go to a hemotologist who tested me out and found it out. My rheumatologist at the time kept telling me the low iron was just the result of "chronic illness" and did nothing to help me, so if it lasts for a long time maybe push to get blood tests as well.
I still am fatigued and need to rest just about every day, but at least I'm feeling better than before.
Hope you feel better soon...but I think you should definitely rest rest rest when you're tired to let your body recuperate.
Annie N

#6 omaeva

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Posted 06 March 2008 - 07:48 PM

Hi,

For years I thought I was just over stressed and over worked, it's kind of nice to know that the tiredness is a result of this condition. I go to school full time and even though I have more than a full schedule I find it to be easier to pace myself, and get time to rest. I try to schedule my classes so I have time off during the week, where I don't have to be ANYWHERE in particular.

#7 KarenL

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Posted 07 March 2008 - 03:21 AM

I know how you feel. Sometimes I ahve to pull the car over and nap so I don't crash! Make sure you have your blood levels checked. I recently found out that I am seriously anemic and also have a B-12 level that is undetectable, both of which cause fatigue. The doctor says they are usual in scleroderma patients. I had a chest port put in on Tuesday and today I will begin infusions of iron and B-12 shots. Otherwise, just nap when you can, the sleepiness seems to come and go for me. Best of luck,
Karen

#8 WestCoast1

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Posted 07 March 2008 - 04:55 AM

Hello JJ~

Fatigue is such a hard thing to deal with! I have had a past rheumatologist brush it off and say "oh what is fatigue really?" she insisted that everyone is fatigued some times! Hmmmmmm. We here know that fatigue is something much worse than that. I can appreciate Karens description where she pulls over to the side of the road to nap...been there!

There are a few meds that you can talk to your doctor about that help with fatigue. It might be worth it to see if any of these would work for you. I guess it is best to find the reason for the fatigue such as anemia...and go from there.

All in all, a good nap, does wonders. I hope that you start feeling better soon.
*WestCoast*

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#9 Fictionite

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Posted 07 March 2008 - 05:26 AM

Hi. I'm glad you posted this topic, JJ, because I'm having the same problem with the same time frame. This really hit me about mid-January, and I'm so tired of being tired! I'm taking Cymbalta for depression, so I know that's not my problem; however, I don't necessarily feel sleepy - just overwhelmingly exhausted. Sitting around all day can really wear a person out, I guess.

I wish I could be like Mary & Peanut and not dwell on what isn't getting done, but I'm still new at this (not quite 6 months since diagnosed), so my lack of energy and inability to do-do-do/go-go-go is incredibly frustrating. The worst part is that my mind is active and ready, but my body won't cooperate. I feel like I need a serious jump start.

I'm seeing a new rheumatologist on the 17th, and I'd like to address this fatigue issue. I read about a stimulant drug, but has anyone tried anything like this? While I love a good nap, trying to sleep doesn't help. I feel like all I do is sit at the computer or read. Anything that involves actually moving my body is out of the question. Any extra advice is appreciated.

Thanks, LeAnn (Fictionite)

#10 Piper

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Posted 07 March 2008 - 06:11 AM

Hi JJ, I'm another with this kind of fatigue. Some days all it takes is to vacuum half a room and then I have to sit down. I will fall dead asleep for 20 minutes to half an hour and when I wake up I feel much better so I believe my body is telling me what I need. As I don't have a diagnosis yet I tend to push myself to the limit because I feel like I'm just being lazy but, falling asleep like that is not normal. I am also on iron because of anemia but I haven't noticed much of a difference since I've been on it. Just know you are not alone. People who have never had this feeling have no idea how disabling it is.
Hugs, Piper

#11 debonair susie

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Posted 07 March 2008 - 07:50 AM

JJ and Everyone who posted on JJ's thread... I hear ya! It's all true! The same goes on with me, too.

I have a friend who felt like she had the flu, several years ago... she has always been such a hard worker, but she was going thorugh a terrible time. After she described this all to me, I suggested she go to a rheumatologist and get checked out. She found out she has Limited Scleroderma. She said that everyday, for at least 2 weeks, she would take 2-3 hour naps... She hadn't napped since she was a small child! I let her know that was "normal". She said, "Now I can really appreciate what you've been gooing through".

I'm just glad we all have this forum to talk about all of the things that plague us :rolleyes: .

Hugs,
Susie
Special Hugs,

Susie Kraft
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#12 nan

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Posted 07 March 2008 - 08:45 AM

Hi,
Fatigue is definitely a problem for me. I had to take disability retirement in 2005. I try to pace myself. I feel like I have had a full day if I can get my son to school, get him back home, do some laundry, and possibly a trip to store. I can't clean my house at all. I always ride a scooter in the store. I take frequent naps. Currently I am dealing with a 16 week old stress fracture in my foot and that is really wearing me down.
Take care,
Nan

#13 Margaret

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Posted 07 March 2008 - 10:01 AM

Hi Everyone,

Gareth's been sleeping on the couch for an hour now (3:45 pm). It's like this every day when he gets home from school. Lays down and passes right out!!! He was in to see the cardiologist today for his yearly checkup and there is nothing wrong heart wise except for the mitral valve prolapse that they found last year.

Take care, Everyone.
Margaret

#14 JJ-Knitter

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Posted 07 March 2008 - 02:01 PM

Wow, what a great response! Thanks a million, everyone. I'll ask my rheumatologist about B-12 and iron. I know that I have been anemic in the past so it is definitely worth checking. I'll follow the recommendation to take naps as needed! :rolleyes:

I haven't been diagnosed all that long either and I'm with you, Fictionite - it really bugs me sometimes that I can't do-do-do and go-go-go right now, today and everyday. C'mon Body, let's have some consistency here, says the Mind! Nuh uh, says the Body, I rule and you must obey....

Thanks again, everyone. Have a great weekend and stay warm and rested!

#15 barefut

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Posted 07 March 2008 - 06:52 PM

Hi JJ,

Thanks for the post. I learned a lot from the replies. I had forgoten about vit b shots - worth mentioning to my rheumatologist next visit.

Fatigue is probably my worst symptom in more ways than one. It gets me physically and psychologically.

I worry my fatigue will cause me to lose my job too. Some mornings I don't know how I will ever make it in to work. Most days I hit the proverbial brick wall sometime after lunch and all I can think about is laying down.

Thank goodness we have a couch in the conference room. I laid down yesterday on my lunch break and it was like my cell phone alarm went off minutes after I put my head down and it had been an hour!

Take Care. I hope some of the suggestions work for you - and me!

Love,
Barefut

#16 tintin

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Posted 07 March 2008 - 07:18 PM

I hesitated to reply to this thread, as I do think one should try all of the non medication based solutions first. However, I also know what it is like to have tried them all and gotten nowhere. Years before I was diagnosed with CREST I had to deal with the fatigue of Dysautonomia.

When you are young and look healthy you don't get a lot of sympathy. I found that it is better to keep your mouth shut and just find a way to get everything done. It took everything I had to get through a normal day back then.

These days I use Provigil to take the edge off of my fatigue, and I have to say it has been an enormous help.
keep on smiling

crawler

#17 MaryFanPhilly

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Posted 09 March 2008 - 02:11 PM

Hi LeAnn & JJ, you'll find your way around this fatigue just like all the other obstacles, never fear; you are stronger than you think you are. I forget who said it somewhere on this site, but they explain their disease to other people by saying they wake up every day with a number of 'spoons.' Some days they have more spoons than others. Sometimes it takes one whole spoon just to shower and get dressed. When the spoons are gone, they're gone... we learn how to pace using our spoons! I've had to learn to ask for help which I fought for a long time, but once I got past that I found that soooo many people are so willing to help. They call me on really cold days to see if I need anything so I don't have to leave the house. They have throw blankets ready for me when I visit their houses. My kids are experts at cleaning and cooking, and my 17 year old turns on my paraffin bath to warm up for me if I happen to be out on cold days so it's there waiting for me. I had to learn to change MY expectations of MYSELF. I take my spoons and use them wisely... and you will too. The first year is the absolute hardest but when it's over you realize you made it through, and knowing what's coming next is not exactly reassuring but it helps a lot. Wishing you warm days and lots of spoons.... love Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#18 Fictionite

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Posted 10 March 2008 - 07:19 AM

Thanks Mary, and to everyone else who offered advice/support. I know that I need to change my expectations for myself. I also know that I need to learn how to be satisfied with and proud of my "little" accomplishments each day. I am trying, but my previously type A personality gets in the way sometimes. I think I could handle the pain and physical limitations if I could just muster up some of my old, fierce energy. Is today a pity-party day? I think so! Ha.

You're all invited. Thanks for being here for me. ~LeAnn

P.S. We'll make it, JJ - I know we will!

#19 JJ-Knitter

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Posted 10 March 2008 - 12:36 PM

Hey LeAnn!

Thanks to the invite to the Pity Party! I'll bring the chips and dips. :lol: We're strong-minded people and I think "will" features a lot more than "won't" or "can't".
That determination is going to stand us in good stead, I think.

Yes, Ma'am, we will make it!

JJ

#20 jaxs

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Posted 12 March 2008 - 01:24 PM

hi I too suffer from fatigue :( badly I spend all my hours in bed and if not there im sitting doiing nowt B) even doing trying a crossword or reading leaves me mentally exhausted :( I dont often post coz im that tired im on meds just for reflux and my raynoids (if thats how u spell it) hope u find some peace to your fatigue soon :rolleyes: u all take care keep warm jaxsxxx
live life for today and not for tomorrow