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Fatigue is overwhelming this school year


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#1 mando621

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Posted 30 September 2010 - 06:35 AM

Hi,

I had a very good summer physically. I seemed to have lots of energy and I was able to do what I wanted for the most part.

Now that school has begun, I'm feeling fatigued to the point where I can barely lift my arms. I know that I'm not getting as much sleep as I did during the summer, and that is they way things have been for years. I've been tired before, but not this deep fatigue.

I was at the rheumatologist lately, and I've had my echo and blood tests. I have a PFT scheduled for the end of October. So far the blood tests were all normal. I haven't heard any results from the echo.

I've tried Plaquenil and I wasn't really tolerating it well so I thought I'd rather not suffer the side effects. The rheumatologist didn't have any suggestions. I'm not sure if the plaquenil is worth taking now, but I definitely am going to need something so I can keep going. I'm hoping it isn't a sign that internal involvement is getting worse.

Well, I know I can't get medical advise here, I am more or less venting my frustration at this point.

Mando.

#2 Shelley Ensz

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Posted 01 October 2010 - 10:06 AM

Hi Mando,

One of the huge things plaquenil helped me with was fatigue. I was fortunate as I had no side effects from it, however eventually I had to quit taking it because it worsened psoriasis for me. Anyway, it is something you might want to consider again.

To make it through the important things, despite fatigue, I have several tips. One is to eliminate everything that isn't absolutely essential or that uses up too much energy. Plan your schedule carefully and make sure it includes some rest breaks. Go to bed a lot earlier than you feel you "have to", a few extra hours of sleep can help to take the edge off. Never skip any meals, even if you have to pack lunches or snacks. Eliminate anything that drains your energy, like TV, music or even computer games or bothersome people. Do not volunteer for anything or sign up for any extra activities, or social events, unless or until you can handle your daily routine with aplomb and find you are actually bored and eager to do something more. Whenever you are doing anything, ask yourself if it is truly refreshing, or if there is an easier way to do it, or whether it can safely be left undone.

This means you might find it better to take a nap or just quietly rest than watch a TV program. You might find the simplest at-home meals more healthful and easier than wasting time in restaurants; you might be able to leave the bed unmade unless you have company. Take charge of the fatigue as soon as possible, to eek the utmost happiness and achievement out of your life. Don't look only to meds for restoring vigor, because they can only go so far; the rest of it is totally a do-it-yourself job, in my experience.
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.

#3 mando621

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Posted 01 October 2010 - 10:26 AM

Hi Shelley,

I appreciate your advice. I do forget to keep to essentials only at times. When I said "I need something" I was thinking of changes in my life as well as any type of medicine or medical assistance that could be helpful.

I am an overdo-er. I'm getting better at saying no to those things that are beyond necessary, but I still do too much around the house. It has been easier than asking family members to take on tasks and then they don't get done. My family is great, but not so great at taking on tasks without being asked, and if asked and it isn't high on their priority list, they don't do it.

Today I had an opportunity to sleep in and I felt good most of the day. When I came home and needed to do some laundry I could feel fatigue crashing down. I get a deep muscle fatigue in the muscles of my stomach. I feel like my arms are lead.

I've got to go out and rescue my laundry from the approaching rain. At least I'm not fixing dinner tonight.

Mando.

#4 jillatk

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Posted 01 October 2010 - 03:55 PM

I hate that level of fatigue. For me even my heart rate is affected - any movement causes my heart to work as if I am really doing something strenuous when I am actually just getting up to go to another room. I recently was reminded of the value of meditation and the absolutely positive benefits that come from a small investment of time and energy. I try and take 10-15 minutes a day to meditate. It provides some nice rejuvenation when I really need it.

Jill

#5 omaeva

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Posted 01 October 2010 - 05:53 PM

I've been the same way. My fatigue is getting worse and worse, it's really hard for me to make it through a full week of work and life in general. I tried a sample of nuvigil, that helped a lot, I am now battling my insurance to get it approved. Maybe that is an option. There is also Provigil which is the same type of medication. I've also been reading some people get ritalin, and other stimulant type of medications, or b12 shots. It's something to talk to your doctor about, whether or not it's a good option for you.

Although I could tolerate plaquenil, it didn't help me with the fatigue at all.

Good luck!

#6 Shelley Ensz

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Posted 02 October 2010 - 06:38 AM

Hi Mando,

I may be wrong (I often am!) but I think there is a distinct difference between exhaustion and fatigue. Exhaustion is when we simply do too much, and need to rest a bit to recuperate from it. It is overwhelmingly popular with people who haven't yet learned how to say no and to set limits on their time and their life (meaning, just about all of us!).

Whereas fatigue makes it impossible to work ourselves to the point of exhaustion, because we are exhausted before we even start out to do anything. It feels like all day long, we are pushing a loaded cart in front of us. Sometimes the cart is filled with feathers, which makes some activity at least possible, and some days it is filled to overflowing with solid steel, making anything and everything nigh impossible.

Although at times when I am severely fatigued, I like to think that with enough adrenaline, I would be able to get out of the chair or off the couch or out of bed. Sometimes I play mind games with it. If the fire alarm went off, would THAT be enough to at least get me dressed and out the door? If the Prize Truck pulled up at my front door right now, could I garner the energy to get up and open the door? Sometimes I can even psych myself up enough that I can figure a low-energy project which I can do, or ways to get something done that I simply cannot do.

So before you go looking for more remedies for fatigue, you might want to consider seeing what you can do to eliminate exhaustion, first. Sometimes that means setting limits, with ourselves and with others. I know that's not easy, but I find it is much better to nip things in the bud ahead of time, rather than wait until exhaustion becomes fatigue, and rains on the parade all day long, every day.
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.

#7 enjoytheride

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Posted 02 October 2010 - 07:24 AM

I found that I have two kinds of "tired" going on. One is where I simply don't have enough energy to get the body to take a few more steps-it feels like I'm "out of gas." I have to sit for a couple minutes to recharge to go the next 30 or 40 feet.

Then there is the kind where I get very sleepy- if I sit, I fall asleep. The bed just calls out to me.

Luckily for me, both of these feelings have been helped. When my doctor put me on fairly hefty amounts of vitamin D, I lost the "out of gas" tired but the afternoon fatigue pretty much stayed until I started the hydroxychloroquine. Now, although I don't feel like 20 again, I'm so much better.

Maybe it would be worth asking your doctor to check for other causes of your fatigue too. Blood work to check that you are not deficient in any vitamins or minerals. Also a review of your diet to see if you could tweak it to get more energy. My experience was that other things beside the sclero can cause fatigue. Sometimes, because this disease causes fatigue so often, doctors may not investigate other problems that can be helped like sleep apnea or allergies, etc.

#8 Amanda Thorpe

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Posted 02 October 2010 - 08:47 AM

I hate fatigue, hate, hate, hate it. I have fatigue from sclero and from heart failure which made it an effort to get from one room to another, even conversations would leave me tired and out of breath. Post pacemaker going from one room to another is not as much effort but the overall fatigue hasn't changed. Maybe it will get better with time as the pacemaker does its thing.

Take care.
Amanda Thorpe
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#9 Shelley Ensz

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Posted 02 October 2010 - 10:13 AM

I'm still trying to make sense out of my previous message. I'm wondering if I turned around the words, exhaustion and fatigue. I think I did. What I'm trying to say is, when fatigue is starting to be a problem, that is the time to jump on it, before things get out of hand. I let my fatigue get entirely out of hand before I sought any medical care, and it took me years to start turning things back around. So it is nothing to ignore, and definitely something to see the doctor about. By the same token, there is no magic pill that will help us manage our lives better and by managing our time and our life better, we can maximize our happiness and satisfaction despite fatigue and all the other assorted issues of illness. So don't go only in search of a pill, consider the whole ball of wax and make substantial changes, if need be, before things get worse.

At least, I think that's what I'm trying to say. I really shouldn't type during nap time!
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.

#10 erika

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Posted 04 October 2010 - 12:22 AM

Dont worry Shelley about turning around the words. We, tired/exhausted/fatigue as we are, have not noticed that at all! :rolleyes:

#11 mando621

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Posted 05 October 2010 - 12:33 AM

Hi Shelley,

I did have a bit of confusion reading that first reply. Rearranging the words does make more sense.

I took my reflux medication last night and I couldn't sleep much at all. Has anyone else experienced insomnia as a result of taking a PPI? I've changed brands because I have the solu-tab which doesn't have to be swallowed it just melts away. I noticed that when I changed to a capsule form I wasn't sleeping well, and the solu-tab really made it impossible to sleep. I felt as if I'd had a huge mug of coffee before going to bed.

That isn't doing good things to my fatigue and exhaustion. I'm glad I have a test in 3 classes, that means I can just sit. I hope I don't end up dosing off. That would be bad.

Mando

#12 red

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Posted 05 October 2010 - 11:32 PM

Hi Mando and all,
I never got insomnia per se, but one PPI I took years ago gave me horrific nightmares, always shortly after I went to sleep, waking me up repeatedly during the night. It was right after the 9-11 attack on the World Trade Center. At first I thought it was a coincidence, but finally stopped the med after about a week, no more nightmares, then tried the medicine again after another week and they started right back again. I think the doctor thought I was crazy when I told him about this side effect but I was really afraid I would have a heart attack, the dreams were so vivid and terrifying! He did change me to another PPI (a capsule) and I never had the problem again.

I can sympathize with you about the fatigue, I dozed off all the time at work, and continue to do so at home now that I'm out on disability. Hope your doctors can find some solution for you. Enjoytheride - I get those 2 kinds of fatigue too just as you described. I am also taking Vitamin D 1000 u a day which my doctor recommended, but without any relief. How much did you take? Am going for my yearly appt withrheum in two weeks, I plan to ask if I can try plaquenil or some other remedy.

red

#13 enjoytheride

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Posted 06 October 2010 - 03:34 AM

Red- for me, I had to have over 5000IU per day to feel the effect. But I don't think this is true for most people- I had blood tests that showed low levels of Vitamin D even after taking high levels for quite awhile. I was in no danger of getting vitamin D toxicity.
If I even dropped to 4000IU I felt the difference fairly soon.
I certainly would be cautious about this level of D without the blood tests as it can cause calcium deposits in various organs like the kidneys an heart valves.
I recently had a parathyroidecty which was done due to high hormone levels causing dumping of calcium. I am reducing my Vitamin D levels now to see if having the surgery reduced the amount of Vitamin D I need.