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Severe Fatigue


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#1 amberjolie

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Posted 21 September 2009 - 03:50 PM

I've been diagnosed with CREST syndrome - just recently been tested for Sjogren's, but I'm not sure I would have that. I also have hypothyroidism (currently on meds for it). My question is - I have severe fatigue all the time - I know this is part of diffuse scleroderma, but can I also have it with CREST? And what about muscles that seem to get fatigued earlier than they used to? Or am I just someone who's out of shape and doesn't get enough sleep (with 3 kids, that's always a factor!).

I guess I just don't want to go attributing all sorts of things to the CREST that aren't usually a part of it. My boss wants me to put in overtime, and I wanted to know if my inability to physically handle any more is likely due to the scleroderma (since it's just the "limited" form). Do I have a leg to stand on if I want to use this as a reason why too much overtime would be very difficult, or am I just being lazy?

#2 Sweet

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Posted 21 September 2009 - 05:20 PM

Hi,
I have CREST as well, and I too suffer with fatigue. It's my number one complaint next to pain. It's REAL, and yes it can come with CREST. I have been prescribed a couple different medications for it. Taking care of yourself as much as possible is critical, so if you don't feel you can put in the overtime say NO.
Warm and gentle hugs,

Pamela
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#3 enjoytheride

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Posted 21 September 2009 - 05:47 PM

I hate to post about anything specific with this disease because there are so many people who have so much more experience than I do and I know I've got a bee in my bonnet about this because it helped me so much but here it goes anyway......

When I finally stamped my foot at my family doctor and told him that something had to be done, it was because of fatigue. But the fatigue was a strange sort- I would run out of steam- not short of breath or heart racing etc, but simply a feeling that I did not have the energy to lift my leg for one more step. I would sit whereever I was and wait til I sort of recharged. I also fell asleep everytime I sat down although I had problems sleeping in bed.

The rheumatologist that I was sent to did blood tests that showed I was somewhat deficient in vitamin D and she prescribed a course of 50,000 IU of D for 8 then 10 weeks. It changed my whole life- things aren't perfect but I ceased being that short of energy. Other things like severe joint pain that I thought was just getting old after a life of not taking care of myself got much better, I was not so desperately cold all the time, although my hands and nose still get cold. There were lots of changes that have been taking place over almost a year- things that I either hadn't really noticed or just chalked up to getting older.

So for me that mild vitamin D deficiency was very serious. I've since read that this is common in CREST.
Anyway, I still have some fatigue so the answer to your question is yes but so much better with the supplements of D.

The other thing is that stress can make it worse so if the overtime stresses you, it would be good to avoid that too. Good luck with your employer- it's hard for someone to understand this condition.

#4 mando621

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Posted 21 September 2009 - 11:43 PM

Hi Amberjolie,

Again, I can't speak as a doctor, but fatigue is my number one complaint right now. It has been getting somewhat better now that I'm 3 weeks into teaching again. The first week wasn't too bad but the second was terrible. I was prescribed plaquenil for the fatigue. I haven't been taking it because of the side effects for me. I get the fatigue just like previously stated. It isn't breathless, just shear exhaustion like I can't lift my arms. This is hard when I'm using a chalkboard to teach. It also happens when I have to write on the board for a long time. I don't collapse or need to sleep really, I have to sit and get some physical rest before I can do more. If I push and keep going, then I really suffer later on with less energy even into the next day. I'm still trying to figure out how much I can do, since it seems to vary from day to day. I'm trying to listen to my body more without thinking too much about what is going on since that increases my worry. I should be getting a little more exercise than I do, so I'm hoping that will improve things if I can make it to the gym for 20-30 minutes of walking or cross trainer. The problem, in the early evening, making dinner and cleaning up takes my energy and motivation to get to the gym. Oh well.

Mando.

#5 Jeannie McClelland

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Posted 22 September 2009 - 05:57 AM

Oh yeah, fatigue, yes - got that (got the T-shirt too). For me, it's sometimes like taking one more breath would require more energy than I
have. It's horrid. ~

I finally gave up and accepted that when my miserable body is screaming at me “Lie down, you silly woman!” I’d better lie down. So now I look on a nap as a treat. I have a special blanket and I always take a cup of tea and a good book to bed or the sofa with me. Not quite a spa with gorgeous pool boys and a really yummy masseur, but hey, you take what you can get.

There is a good site about coping with fatigue here. It's from the Cleveland Clinic and was written for people dealing with cancer related fatigue, but there is so much good information, it's worth reading.

Overtime~ Good luck with that one. If you really feel you can't do it, you need to say no, if you can. Some classes of jobs aren't protected by the individual state's Fair Labor Standards rules and employers can require OT. You might be safest enlisting your doctor. It's hard to argue with written medical advice. A "sick note" might be just what you need.

Working in a state of total exhaustion is not only bad for your health, it can also be dangerous, especially if you have to operate machinery, or drive. Before I retired, I had a job that required a minimum of 5-10 hours overtime every week, plus being on call 7/24. In one week (the one that made me think I really needed to retire) I had 3 24-hour days~ I think I was all too often a hazard every time I got behind the wheel of the car. Posted Image

Hmmm, I think it's time for a nap. Shelley, could we have a yawning emoticon?? Please?

Warm hugs,
Jeannie McClelland
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#6 Amanda Thorpe

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Posted 22 September 2009 - 07:38 AM

Hello Amberjolie

CREST or limited scleroderma is still scleroderma and part of scleroderma is fatigue. I know lots of people with sclero and fatigue is an issue for all of them even those who have had sclero for years. I understand it gets better with time but never departs entirely. Even if all of my other sclero issues disappeared I would still be housebound and unable to work because of the fatigue alone it's that bad for me.

I don't even know how you manage to work let alone do overtime! Most certainly get your doctor on board with a view to being excused from the overtime. Most importantly however, never think of yourself as lazy or as some sort of under achiever. You have to put in twice as much effort with half the resources to achieve what well people achieve. To my mind that makes you way more valuable but then as a fellow sclerodermian I'm biased. :P

Take care.
Amanda Thorpe
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#7 amberjolie

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Posted 22 September 2009 - 10:20 AM

Thanks for the replies! I find the biggest problem with fatigue for me is the mental brain fog. Often I feel I could physically go on, but mentally I just can't do it. If anyone's had experience with driving through the night (did it a few times a long time ago), that feeling you get at about 4:00am, when you just don't think you can keep your eyes open anymore - I get that about 2:30 in the afternoon. Then I get a second wind, but I'm constantly battling that infernal brain fog.

I don't remember not feeling tired, and it just seems to get worse every year. I get to the point where I think there's just no way I could possibly feel more tired, and then surprise, surprise!

Anyways, I feel so much better that I'm not alone, and that I could probably get the doctor to say something if the boss tries to push me too hard. I chose to tell our company doctor about the crest when I was diagnosed (he was actually instrumental in getting my first blood test for my finger ulcers), because I figured I may need to fall back on that at some point if things got difficult.

I think I'll also ask about Vitamin D to see if something like that would help.

Thanks again!

#8 amberjolie

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Posted 22 September 2009 - 10:24 AM

Thanks for all your replies! So I'm not crazy!

For me, it's not so much physical fatigue as it is brain fog. I just feel like I've got this mental fog all day, and I just get mentally and emotionally tired. And I'm starting to have certain annoying cognitive issues, like forgetting words, and forgetting things, and so on.

I think I'll ask about the vitamin D to see if that could help.

Thanks again!

#9 Shelley Ensz

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Posted 22 September 2009 - 12:26 PM

> Hmmm, I think it's time for a nap. Shelley, could we have a yawning emoticon?? Please?>

Okay Jeannie, here it is, all yours and even red-headed: :yawn:

I did it by just waving my magic wand :fairy: after a very nice afternoon nap.
Warm Hugs,

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

#10 Kamlesh

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Posted 22 September 2009 - 01:41 PM

Fatigue is my number one issue followed by coughing.

I tend to stay pretty active – full time job and a two mile walk.

I simply find too tired in the morning. I do take several vitamins – Foltx (prescription folic acid), vitamin E, Calcium with D3, multi-vitamin tablet, etc.

I have been able to improve my fatigue by taking iron. Earlier, I was too low in Iron and my body has lost ability to absorb iron, so I had to take through I.V. Now my iron level is monitored every three months.
Kind regards,

Kamlesh


#11 Peggy

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Posted 22 September 2009 - 01:53 PM

I don't have the Crest like you do but the systemic. Fatigue for me is at the top of my complaint list, along with terrible muscle pain. My mornings are good but by about Noon I am running out of gas totally and by 1:15 I start falling asleep no matter how hard I fight it. If I try to fight it I can fall asleep sitting in a chair. When I was on the cyclophosphamide, which made me even more tired than I already am, I would literally fall asleep while talking to someone. I did this to my cleaning lady twice. It was embarassing but there wasn't a whole lot I could do about it.

I so applaud you for working. There is no way I could hold a job anymore and I am so thankful that my disability went through right away. Your boss should understand that you have an illness and that overtime just isn't doable for you.

The muscle pain that I have is either from the sclero or the Polymyositis that I also have. I also have sjogren's, raynauds, and hypothyroid. The pain is so constant and bad that I wear a pain patch and also take oral pain meds for it. It first started out as random sharp pains that would attack me at random parts of my legs and arms and now has escalated into constant pain. It has also damaged my muscles permanently to where I have permanent muscle damage up to my knees and hopefully doesn't keep getting worse.

I hope you're able to get naps in whenever you can. I have found that when my body says its tired and needs rest that there is no telling it differently.

Warm hugs,

Peggy



#12 Margaret

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Posted 22 September 2009 - 02:23 PM

Hi, Everyone....thanks for all the replies about fatigue. I just assumed that because Gareth was on Plaquenil and his blood work is back to normal, that his "I so tired" was laziness/boredom. As for the brain fog.....well, he's definitely gone down hill speech wise and receptive language. I usually have to ask a question two or three times and, finally, "Gareth....answer me" "Huh...what?" I repeat my question, he thinks about it fooooooorrrrrevvveeerrr, and, then, responds. I had no idea it could be related to his UCTD.

Take care, Everyone.
Margaret

#13 Patty LaFave

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Posted 22 September 2009 - 05:48 PM

Hi all, sorry if you happen to see this reply from me twice, I started a reply then hit something that made the reply disappear, so Im not sure if it will show up twice, I hope not

I also have CREST with many related medical problems & hypothyroidism, and the worst problem I have now besides chronic pain, is severe fatigue. I give all you who work with this disease such great credit. I am a Registered Nurse, but applied for Social Security disabilty in 2004, and was approved thankfully 5 months later. At the time fatigue was only a little part of the problem, I had many medical issues from the CREST that required 14 hospital stays over a 2 yr. time period. Now 5 years. later most of the problems with different treatments for each are manageable, but I have never returned to any type of work, because mostly the fatigue. I do take a medication that is usually given for people with ADHD called Adderal that does help significantly but the problem is the medication effect doesn't seem to last more than 3-4 hrs. then im tired again. I do take it twice a day, but when it wears off Im drained again. There are other ADHD medications I have tried but they all only seem to last that short period. Days I dont take it, it takes forever to even get to a functionable status. I feel both physically & mentally drained. Sometimes after I get my kids off to school in the mornings I'll go back to bed and sleep til sometimes 1-2pm, but it doesn't ever feel like I get enough sleep except for those few hours. I am going to talk to my Dr. about the vitamin D that was mentioned. I take 1 vitamin D supplement a day for a Vitamin D defficiency and maybe taking a higher dose would be helpful. Its good (but not really good, as no one should be this tired) to hear that I'm not the only one that experiences such a difficult fatigue. I look forward to seeing if anyone else has had treatments that have been helpful to reduce the fatigue.

#14 imagine2

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Posted 23 September 2009 - 12:22 AM

Good morning everyone, I'm not sure any more what I have whether it be localized or limited scleroderma. I also have the fatigue. Like Patty, I get the kids ready for school, and then need a nap. I've discussed this issue with my doctor for 2 years now, and he looks at me as if I don't have a clue.

My primary care doctor tries to help me more than the rheumatologist, but so far nothing has helped. I've been on vitamins, tried more exercise. My rheumatologist put me on afeditab for the Raynaud's and I find that it makes my fatigue even worse. At one point I stopped taking it, his nurse asked why, when I told her she told me the world is tired, get over it. My primary care doctor just prescribed prozac, I've been on it for 4 days, now the problem is I can't sleep. I am scheduled to go back to work October 5th. I considered going back part time but financially that won't be possible. Should be a treat trying to force myself through another day now that I'm sleeping less at night. All I've been told is my potassium is low, and eat more bananas. So, anyway, I'm so thankful for this site, It feels so good not to feel so alone in all of this. Just wish I could get my doctor to listen this well. Hope you all have a great day.

Robin

#15 smac0719

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Posted 23 September 2009 - 07:19 AM

My fatigue level improved quite a bit earlier this year and I thought it to be because of the increase in MTX, but I have been very fatigued the past couple of weeks and even have achy shoulders and muscles in my arms primarily. I did recently find out my vitamin D level is at an all time low so maybe that triggered it. I just took my second weekly dose of 50,000 iu's so hopefully it'll help and soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#16 mando621

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Posted 24 September 2009 - 06:33 AM

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.

#17 imagine2

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Posted 24 September 2009 - 01:18 PM

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

#18 Buttons

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Posted 25 September 2009 - 01:56 AM

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

#19 Jeannie McClelland

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Posted 25 September 2009 - 03:00 AM

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
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#20 imagine2

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Posted 25 September 2009 - 05:39 AM

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: