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Severe Fatigue


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#21 Snowbird

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Posted 25 September 2009 - 12:29 PM

It is so true....everybody thinks that if you are fatigued, you just need a nap. It is just not the same as being tired...when you're tired, you take a 1/2 hour nap and get up sooo refreshed....but when you are fatigued, you can sleep 12 hours and still get up feeling exhausted. I guess for those that never experienced the two, they just won't be able to understand the difference.

Imagine2...I hope you remember to discuss with your doctor that you feel dizzy when you're tired...should check anything new (you said it's been happening the last few months)...or did you already do that? :)
Sending good wishes your way!

#22 imagine2

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Posted 25 September 2009 - 04:04 PM

Snowbird, I havent mentioned it to my Doctor yet, wanted to see if it would go away on its own, I see him in November, so will mention it then, he will write it down and not say anything lol. Or I will get, oh, its the scleroderma, not much can be done for that. Do you ever get sick of hearing that one. They blame everything on scleroderma. :VeryHappy:

#23 Snowbird

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Posted 26 September 2009 - 03:23 PM

Imagine2....oh my ...I sure hope not....I hope he investigates further than that or at least sends you to someone who would. This is where I would say...if not, I would keep looking till you find one that does so you get the best care that you do so deserve. :)
Sending good wishes your way!

#24 charliehorse

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Posted 28 September 2009 - 11:51 PM

A lightbulb flashed :VeryHappy: when reading all of your posts about fatigue. I suffer from CREST and often find I hit the wall late afternoon. There are two issues I'd like to explore.

I'm very interested to hear how you cope physically with illnesses like flu and colds and how this contributes to your fatigue. I've been battling something rather disgusting now for about six weeks - I think it might be that H1N1 flu - and I just can't shake it. Just when I think I'm getting over it I slip backwards again. The worst part is the fatigue which comes on at various times during the day and, like many of you have said, I feel as though I need to sit down right where I am and not get up again. Sometimes with sleep and sometimes without sleeping I gradually recover from the fatigue and can then continue. Is this a common experience with viruses?

Another element of the discussions that interested and scared me is the whole work issue. I've been on disability in the past because as a teacher I have found it very difficult to deal with the physical, emotional and mental exhaustion as well as the sometimes impossible task of obtaining a warm work environment. I returned to teaching and I get through at the moment, but it scares me to think of not being able to work in the future. How do people manage to pay their mortgages and support themselves? Now I am a house owner (or at least the bank is on my behalf) I feel little on the trapped side.

Warm regards,

Charliehorse :bye:
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#25 Shelley Ensz

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Posted 29 September 2009 - 04:36 AM

Dear Charliehorse,

Welcome to Sclero Forums! I'm glad you've joined but sorry you have CREST and excess fatigue.

I'd venture to say that any sort of complication you may be having (flu, cold, fatigue, whatever) might be a great opportunity to visit your primary care doctor. They can tell through blood tests and other things whether the fatigue is due to infection or inflammation, and so forth.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#26 nan

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Posted 29 September 2009 - 08:37 AM

Hi,

I too have CREST and Sjogren's. Sjogren's by itself can cause extreme fatigue, as can scleroderma, put the two together you get really bad fatigue. I am not a doctor, but that is what I have heard from my doctors and from researching the two. I am lucky in that I don't work, so I can nap as frequently as I like.

Take care of yourself,

Nan

#27 Patty LaFave

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Posted 29 September 2009 - 01:34 PM

Charliehorse,

You may want to look back a few months or so, there are a few discussions on disablity. Someone related that scleroderma is now on a list of disaeses that are supposed to be fastracked through the paperwork.The person that responded to this post said that you have to make sure you tell the person from disabilty that interviews you that the sclero diagnosis is suppose to be fast tracked in order for them to place you application there. This person also said because sclero is fast tracked that she was approved in 5 weeks. Patty

#28 charliehorse

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Posted 29 September 2009 - 07:17 PM

Thanks so much, Patty, for the information.

I'm not sure if that information is applicable in Australia (which is where I'm from). I'll have to do some research.

Kind regards,

Charlie :happy1-by-lisa-volz:
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#29 Shelley Ensz

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Posted 05 October 2009 - 07:38 AM

Charliehorse, what have you found regarding the status of scleroderma for Australian disability?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#30 charliehorse

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Posted 05 October 2009 - 09:19 PM

Hi Shelley,

I don't know what the official line is, all I know is that when I applied about four years ago I was processed very quickly. I suspect that the strength of my application was the Raynaud's issues rather than the scleroderma. I have no recollection that scleroderma of itself was given special recognition, but the severity of my Raynaud's, I believe, was what they noted.

Cheers,

Charliehorse.
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#31 charliehorse

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Posted 05 October 2009 - 09:24 PM

Actually, Shelley, while I'm here ...

I have been doing it hard for the last little while because where I live in Australia the seasons are changing from cold to a bit warmer and I have a theory that this temperature change mucks with my system. I tend to be a bit vague about it all and every time I go through something I think it's the first time but my fiance assures me we (he and I) have been through this every year! I really feel that it is something in my system that struggles with the change in temperature. I just wonder if you come across anything about that.

Kind regards,

Charliehorse. :emoticon-hug:
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#32 sandra

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Posted 07 October 2009 - 02:33 AM

Hi Charliehorse,
Well I too beleive that when the seasons change (temperatures) that my body goes "wingy" for about a month then starts to settle down again, I have promised my self after I was approved for "Disability Income" and adjusting our life style, downsized to a more affordable home and less upkeep! made a world of difference for me & my husband and started gaining our security level & comfort back , and we are both very happy we did it this way :) We promised ourselves notto carry all the complicating symptoms that come with Scleroderma in our brains, I have found it becomes :wacko: Brain Overload :wacko: real fast, and thats not good for us either, so I taught myself too take control and try not to let it control me, (it can become so mind boggling)I deal with each day as it comes now, and actually I do better this way. I have a list of all the overlapping complications about 14! It was driving me crazy, trying to figure this mess out- So I quite, I overloaded my poor husbands brains everyday with this and saw his worries and stress building- So I had to take control, I love him so much :wub: , I don't want this to hurt him anymore,I was making his life all about "ME" every day,Now I bring up subjects that he likes (fishing, camping etc) , and he starts yacking away and lites up :D - and this makes me feel better. Charliehorse this is just "my way" Ive lightened the load, and you will find your way.
Positive happy thoghts to you both :bye: Sandra

#33 mando621

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Posted 07 October 2009 - 06:54 AM

Hi all,
I just had to reply with a comment about all the emoticons, What FUN!! I love the animated bunny, how appropriate for my life right now.

When school started this fall I thought I'd never be able to make it. Well, things are getting somewhat easier to deal with on a daily basis. I know that right now I am so stressed, depressed, and anxious that it is causing lots of problems.

A recent conflict with someone has really brought me down. This morning my daughter was talking about a project for school, she needs to pick a song that describes her. Right now, I feel like Mozart's Requiem. I was walking my dog this morning, and I saw a cat lying dead on the road, I was in tears on the way home and it made my whole chest hurt. I think the sadness just dredged up all my hurt and it was literally giving me pain. :crying: .

I see my primary care doctor on Friday, and I'm going to bring up my emotional status at this time. I guess it might be time to try better living through pharmeceuticals (as someone once said here).

I know that this emotional upheaval is causing my fatigue to be even worse.

Thanks for listening.

Mando.

#34 imagine2

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Posted 07 October 2009 - 07:23 AM

Hello Mando,

I have to be honest with as an animal lover, I would have cried too. Hope you are feeling better really soon. I am also trying very hard to pull myself out of the pit I fell into , but we have to believe it will get better. Take care.

#35 WestCoast1

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Posted 08 October 2009 - 04:48 AM

I had to chime in about fatigue. the first time I mentioned it to my rheumatologist she replied "So what is fatigue really?!...Don't we all have fatigue!". That was a great disappointment. Since then, and 2 rheumatologists later, I have had my ups and downs with fatigue but lately I'm really feeling it.

I had to quit my job due to fatigue and pain. Now that I am working at home, I don't understand how I did those long hours just a year ago. I have been on a medication used for fatigue and other autoimmune illnesses, but it seems to have lost some of it's usefulness. It only helps for the stiffness these days. I do strength exercises in the morning where I do modified push ups off of the bathroom sink (just leaning onto the sink and pushing up). I can measure my bodies weakness or strength by how many I can do. I was up to doing 16, then 12 and now almost 10. I think that this total body weakness goes hand in hand with fatigue, for me at least.

I am REALLY hoping that there is another medication that can help with this fatigue. Any ideas? PM me if so.

Wishing you all the best~
WestCoast
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#36 Amanda Thorpe

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Posted 08 October 2009 - 05:51 AM

Hello Erin

What a completely unhelpful reply...we all have fatigue? You think?! :emoticon-bang-head: There is a world of difference between feeling tired and scleroderma fatigue which anyone with it knows. You are not just tired but weak as well, even simple tasks seem huge undertakings. Today I have done zippo because I am so fatigued, no idea why today's any worse than yesterday but there you go.

Even if my only sclero symptom was fatigue that would be enough to prevent me from working so you're not alone there either.

Take care.
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#37 Snowbird

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Posted 08 October 2009 - 12:45 PM

Hey Mando...try not to worry too much about the pharmaceutical aspect, if you are, think of it as only a name. If I have learned one thing, it is the understanding that sometimes people just need a little extra help to get them through extremely difficult times...and we all know there is nothing easy about this disease! Try to think of it this way, if you need it, take it...when you don't, you'll know in your heart (then chat with your doctor)...and the two of you will decide together just when and how to go about giving it back :emoticons-yes: I think you really will do that, give it back when you're ready!

Erin, I can't say anymore than Amanda already said about the fatigue.... :emoticon-bang-head:

and...I also love these little emoticons....they're so much fun!
Sending good wishes your way!