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Norma

Fatique

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Hello, my name is Norma. I am 42 years of age and was diagnosed with scleroderma approximately 20 years ago. The progression has been very slow starting with raynauds of the hands and feet. I count myself very lucky that the disease is localized. However, I am always tired. It does not take much for me to become exhausted. Does anyone have any advise on how to get more energy? Thank you so much.

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Hi Norma......fatigue is a major problem with lots of people here. My own son was exhausted till he was put on Plaquenil. Even then, it took a good 2-3 months before he was back to normal.

 

Take care, Everyone.

Margaret

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Hello Norma and welcome to this forum.

 

You'll get lots of suggestions I've no doubt as fatigue is common to us all.

 

For myself I sleep when I have to and fit things in around that. I can't make the fatigue go away so I have to recognise it's there and try to work with it because if I don't it will get me in the end and I'll be in bed for days. It's a question of doing it when I can and sleeping when I can't.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Welcome Norma,

 

Fatigue is a big problem. Many of us have modified our lifestyle in some ways to eliminate some of the symptoms as best we can. When modification isn't working there are medications. Plaquenil has helped so much with my fatigue. It would be so horrible at times because I would feel so weak I almost could not move. I would have to fight to stay awake driving to work and that was scary. Thought I wasn't sleeping enough. But 8-9 hours of sleep should have been enough. The fatigue had been long standing and it is basically gone, scale 1-10, it used to be a 10 and now it is 2-5. It also helps with rashes, itching and some joint pain.

 

Hope this helps alittle.

 

Judy


A happy heart is good medicine.

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Hi Norma,

 

Welcome to the Forums. I am sorry you are having such a hard time with fatigue. It is one of the most complained about of all sclero symptoms.

 

I'm just going to give you a laundry list of things I have been advised to try:

 

pace yourself

get plenty of sleep

eat well

take a multi vitamin

get your iron checked

walk

get help - with whatever

 

In addition, make sure you're not depressed. Though depression can bring on fatigue and fatigue can bring on depression to make a vicious cycle, then it is hard to know what came first. I discovered that one can be depressed and not even really realize it.

 

I would talk with your doctor about your fatigue if I were you. Hang in there and keep us posted.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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I have cycles of fatigue. When I am fatigued it seems that everything is worse, everything hurts and I can't breathe. Having insomnia doesn't help either. Luckily I work afternoons so I can sleep late.


~ Teresa~

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Hi Norma,

And welcome!! I'm so glad you've joined us, but sorry it's because of your diagnosis.

 

Are you on Plaqeunil? It can really help with fatigue. Also my doctor just started me on Provigil and it really helps too. Almost too much, I can't take it everyday or I'm zinging of the walls and can't sleep.

 

Looking forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Norma:

So glad you found the Sclero Forums ~ so sorry you are feeling so tired.

Unfortunately, I've grown use to being fatigued. I think you've gotten great advice thus far, do listen to your body and rest when you need rest. You'll get good at it after a while.

Welcome and please stick around, it helps just to know others understand.

Much love,

Nina (DE)

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Welcome Norma,

 

I've come to know fatigue very well for the last going on 11 years. The best way for me to handle fatigue is to pace myself. I make sure I eat throughout the day to keep my metabolism up. Also I try to limit sweets and caffeine since this gives an immediate boost but then brings me down quickly too. I found eating fruits or juicing gives me an added burst of energy. Using the spoon theory, I figure how much energy an activity will consumme and limit a certain amount of time for that activity. Once the time allowed runs out I know it's time for me to stop, eat and rest. If I don't stop and rest, I'll either get cranky or feel completely run down the next day. Nothing is worth pushing myself to exhaustion.

 

I'm glad you found us. Keep posting and venting whenever you feel the need!

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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Hi Norma

One thing that wasn't mentioned and helps me a lot is B12 injections. I'm also on iron. Because of sclero my stomach doesn't digest foods well, and when my blood was tested they found the iron and B12 low. They treated me for that and I began feeling better after a bit. I still get tired and have to pace myself, often taking one weekend day to total rest as much as I can. I also will buy prepared foods for dinner once in a while so I can take an evening collapse, too. Naps help alot too.

Annie N.

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Norma,

 

I forgot to mention when I say I rest throughout the day, I mean actually lay down, put my feet up. Usually for an hour or more. Sometimes I fall asleep for a while. That's when I know I really needed a break. I just listen to my body. Taking vitamins should also help!

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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Hi, Norma. Welcome to the ISN Sclero Forums. I hope you have had a chance to read some of these comments and look forward to getting to know you better. For me, fatigue is the most difficult symptom to cope with. I would be lost without my daily naps.

 

For your reading pleasure between naps, I propose having a look at our page on Scleroderma Fatigue.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I learned something about fatigue just recently that made me realise that when fatigue hits ya better off just surrendering to it even if it is a lay down for just 10 minutes , what I learned was the difference between normal healthy fatigue and medically induced fatigue ......I remember when I was healthy before sclero and I would get tired so tired that you wonder how you can even get out of the chair to go to bed ,and just as you go to get up you remembrer you forgot to make the lunches for the kids next day , you push your self out to the kitchen and start making those lunches , but at some point you tend to get a "second wind" you suddenly have more energy where ya can do even more than just do the lunches , this is healthy tired ,you do get a second re charge , but with medically induced fatigue once your fatigued there is no 'second wind' no second extra charge , when your on 'empty' thats it , the only way to refill your tank is to lay the body down so it can recharge itself ...... hope this makes sense , but this has been my understanding and my experience .....when I get the fatigue , I just cannot push thru it but soon as I lay my body flat to rest it it seems like the muscles etc can get a recharge , so I give in to this and it make for a much better day in the long run ....... hugs georgette

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