amberjolie

Severe Fatigue

37 posts in this topic

Hi Robin,

 

Wow, you sure aren't getting much help from the medical staff you see. I can't eat banana's because I'm allergic to them. I haven't had my blood levels of Vit. D and potassium checked and I keep forgetting to take my vitamins.

 

I'm seeing my gastro. doctor tomorrow, it will be interesting if he has any insight into my problems. I was denied life insurance recently after they talked to him. I need to know what is in my charts from him.

 

I got the flu vaccine yesterday, and that WIPED ME OUT!!! I could hardly function at 11am. I had the shot at 8:00. Not good. I had to teach all day and grade tests last night.

 

My husband tells me I should get more sleep. He doesn't understand that even if I had more sleep, I'd still get this fatigue that is so different from just feeling sleepy.

 

Mando.

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I don't think most people do understand the difference between being just tired, and being fatigued. My sister tells me all the time to just get more sleep. I wish it worked like that. There are times when I can't even make it to my bed, and fall asleep sitting up on the couch. I did very little today, and I'm wiped out. It was a chore to take my shower. I have also noticed within the last few months that I'm feeling dizzy when I'm tired, not sure if that is something else entirely or just part of the fatigue. I have a better relationship with my blankie than I do anything else right now. :D

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I get the fatigue which can be so draining, it's as if every ounce of strength has gone, a bit like a battery running down or someone pulling a plug out! During these times I can't concentrate or think straight so I take myself off to bed & sleep. But sometimes even that is not enough. The only time I have felt like it is when I had Glandular Fever.

 

Buttons

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Shelley, you are the greatest! Thanks for making me a yawning redhead [emoticon!].

 

While I am still thinking about fatigue :yawn: , I thought I'd share my brilliant first-thing-in-the-morning "ah ha"! I mentioned I try to make my naps a treat. It seems to me that when we talk about coping skills, a lot of the time we are talking about dealing with the emotional fall-out, physical limitations, and anxiety, etc. Maybe we should think about our new normal as needing to be coped with too.

 

I think I came to terms with the disease and it's possibilities and potentials early on, accepted them and moved on, not wanting to give up my enjoyment of life nor the looking forward to further pleasures. The fatigue we get can be so overwhelming that it seems to cause its own set of emotional issues. I really needed to give it a positive spin instead of a negative one 'cause it was spoiling my fun, hence my lovely green fleece blanky, my special tea mug,and a basket of paperbacks just waiting for me to take a nap. (The books are probably having their own emotional issues since I never seem to read them, just knowing they are there is enough. ^_^ )

 

So maybe this is a worthwhile trick - figuring out something positive in everything negative. Raynaud's? You should see the wonderful green and white mittens, hat, and scarf I'm working on. I hope the thyroid medication doesn't make me too warm!

 

Warm and cozy hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie, I to have a ritual before nap time, and you are so right, it does make a difference. My mom bought her self a nintendo ds, and played super mario on it all day long. When she passed away, I took it, just to hold it while I slept. Then I started playing it after getting into bed, it seems to relax me a bit, and helps me fall asleep faster. I also love my warm blanky. I have had hypothyroid now for several years, taking the medication hasn't made me any warmer, so it may not for you either. Keep making those gloves. :lol:

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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!

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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:

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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!

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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:


Charliehorse

 

Life is better with Jeeves and Wooster

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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

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.

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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

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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

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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:


Charliehorse

 

Life is better with Jeeves and Wooster

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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.


Charliehorse

 

Life is better with Jeeves and Wooster

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