Author Topic: So very tired  (Read 1028 times)

trector

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So very tired
« on: January 05, 2012, 12:19:44 PM »
Hello.
     I hope everyone is having a great New Year. I have a question for you. I am so tired I mean really tired all the time. To the point of LL i want to do is sleep. I just want to know how you treat your being so tired. I don't want to sleep my life away. also I am going to the eye Dr. Monday I have had problem with my eyes it seems like forever. I had the lower and top plugs cauterized and my eyes water too much and Itch too much and stuff comes out of them. its weird. I wear glasses and I swear we have glands all along our eye lids and the shout of some kind of stuff and I get the little water marks on my glasses all the time.and my eyes are oily i clean them alot. no luck I have Roceas on my face I think its in my eyes too. any help would be appreciated.
Thanks Theresa

LisaMarie

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Re: So very tired
« Reply #1 on: January 05, 2012, 12:27:57 PM »
I had two different types of tireness at times it seemed.  Before I was taking restasis for my eyes, I would not be able to keep my eyes opened.  This caused me to feel very tired all of the time.

But then, even when my eyes did feel decent, I would sleep.  I could not get enough sleep.  My vitamin D was low.  Taking an over the counter supplement seemed to have helped.  Now, I can be somewhat productive but I do find that I get played out easier.  All part of the spoon theory I suppose.  I never know what my spoon count will be for any given day.

Have you been diagnosed with sjogren's?  Are you taking any medications?  Do you see a Rheumy or a GP?
Plaquenil (generic), vitamin D, Amitriptyline, Citalopram

A66eyroad

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Re: So very tired
« Reply #2 on: January 05, 2012, 12:44:19 PM »
I'm with LisaMarie! At the very start of my Sjogren's journey I wanted to sleep all the time. Then I had the Schirmer's test and learned that my problem (or at least a part of my problem) was the fact that I didn't have any tears. After I had plugs, then cautery, I got much better.

My daughter, now age 31, tells me that her memory of me while she was little is that I was always asleep.   :'(  :-[

The second kind of tiredness is what I've started calling "clinical fatigue." It's more like having the flu. It's when I can't get off the couch and when I do, my legs are like noodles. I once had a baby shower for my daughter-in-law and it took me literally four days to clean up afterward. I would pick up three or four paper cups and paper plates then sleep for three hours, then take down a streamer of crepe paper and sleep for another three hours.

I hope this helps! I'll sit back and see what others say.

Meanwhile, welcome to Sjogrens World!
Female, 60
Sjogrens and subacute cutaneous lupus. Flu-like symptoms, mouth ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, Mary's Magic Mouthwash, carafate.

Dolly Dimples

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Re: So very tired
« Reply #3 on: January 05, 2012, 03:42:59 PM »
Whilst tiredness is common with many of us here,  it should be reported and seen to . Many complaints have tiredness as a main symptom, such as Anaemia,
   Alas it can be a symptom of more serious complaints , so do have it checked out soon..
                                                                    Dolly

angielyn

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Re: So very tired
« Reply #4 on: January 05, 2012, 03:58:59 PM »
I'm with A66eyroad, I have terrible fatigue and tiredness and at first I really had a difficult time trying to explain this to my Dr. since I kept saying I was tired :) I wasn't so much tired as I was fatigued. Such confusion... Although I sleep during both fatigue is by far my enemy and one of my worse issues I deal with. And just the same sometimes it'll takes me days to get something accomplished and it's soooo irritating to say the least!!!

I am seeing a sleep specialist who last visit mentioned trying Provigil to help with the fatigue since he feels my issue is not sleep related or my sleeping habits as much as it is fatigue.

trector

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Re: So very tired
« Reply #5 on: January 07, 2012, 12:21:20 PM »
Hello,
     Thanks for all your replys. Yes I have Sjogrens, Fibermyalgia, Heart problems ADD. Sleep Apnea.IBS. Diverticulitis. I am taking so many pills. and I am on a CPAP machine so is hubby. The reason I am on a CPAP is because My hubby and I went to get a check up and He told the Dr. that all I do is sleep. (I had him there cuz he snores so bad ) and it backfired on me. The Dr. wanted me to get a sleep study and than it came back that I stopped breathing 78 times an hr and my ox was only 78 at night he sent me to my Heart Specialist and he sent me to a sleep specialsit and I freaked because I couldn't get into see her for a month and all of a sudden her office called and I  got in the next day. The sleep specialsit said how bad it was on my heart and I freaked again.now I am on a machine but I got Hubby back. But I am so glad he did that for me. Telling on me saved me. I hate taking so many pills. the hard part is trying to take my Vitamins. and I know I need them they are so big. The heart Dr. has me on Fish oil 1320MG twice a day. Thanks for all your help. Its Sat and I am all by myself today enjoying life.
Theresa

Shade

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Re: So very tired
« Reply #6 on: January 07, 2012, 09:07:23 PM »
I'm on Nuvigil for the tiredness.  It works great to keep me going; however, it's just like some of you mention:  overdoing.  When I stop taking the Nuvigil, I am sooooooooo tired.  It takes days to recover.  Even at the end of each day of taking the Nuvigil, when it wears off...all of a sudden I am so tired I can't function anymore and have to immediately go to bed.

If you're insurance will allow you to get Nuvigil instead of Provigil that's what my doctors recommend.  They said the reason Nuvigil costs more is because it works better for most people.

Good luck figuring out what works for you and your body!

Shade
Sjogren's dx 2011, Fibro, Osteoarthritis, Esophagitis, Depression, Anxiety, SFN, OAB, Asthma, Obstructive Breathing
Gabapentin, D3, Omega 3, B12 , Nexium, Prozac, Wellbutrin, Trazodone, Restasis, Evoxac, Meloxicam, Nuvigil, Plaquenil, VESIcare, Dulera, Montelukast, Spiriva

soycoffee

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Re: So very tired
« Reply #7 on: January 07, 2012, 09:52:12 PM »
I have been thinking for a month or so about working out a one-page "instrument" (test, measure, questionnaire) that would measure -- that's why the term "instrument" is used -- fatigue /tiredness. I do have experience doing research in developing and validating such instruments, so that they give consistent results.

The Fatigue Instrument (a better name would be nice) would allow a patient to communicate the amount of deterioration in quality of a day's activities due to fatigue. Some of it would would compare the present to the past, and some items would focus on the present only.

It is one of those self-report tests that seem obvious on the face of them, like the Beck Depression Inventory, or the Excessive Daytime Sleepiness Scale.

It would allow us as patients to say "I wake up tired," vs. "I suddenly conk out after dinner and wake up for the Late Show," vs. "Any physical activity tires me out completely," vs. "I get very tired trying to follow a couple of people arguing -- especially if they are trying to set me straight." 

And would probably allow for degrees of agreement -- This statement is very like me, not so much like me , completely different from me -- sort of thing.

There are two ways I think it would help us: If I were to fill it out each time I went back to the same doctor, this instrument would track ups and downs in my fatigue level. That would be MY contribution to "evidence-based medicine (perhaps). If the doctor says "but this medicine works for almost everyone, and it should be working for you," and you have the evidence to back up your assertion that it isn't working as advertised, that should be helpful to you or me as a patient.

The Instrument is probably not as reliable as one would wish, for making comparisons between people. That's comparisons as in This person who scored 30, is twice as tired on a daily basis, compared to this other person who scored a 15. Can't do that kind of comparison between people. Can make comparisons between groups -- Dr X's patients don't respond with as much tiredness as Dr. Y's patients do.

Does it seem to be useful to anyone? Do you see problems and negatives with taking this five minute paper and pencil test at the doctor's office? Is it a way to help doctors and patient get on the same wave length about the patient's tiredness?

Thanks for any and all feedback.
Soycoffee
Primary Sjögren's Syndrome // Gabapentin, Prednisone, Dibencozide, Methyl B12, Adenosyl B12, 5-MTHF Folate, MSM for pain, SAM-e, TMG, zinc, multimineral, D3, Benfotiamine, Melatonin, Spicy Hot V-8 Juice

A66eyroad

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Re: So very tired
« Reply #8 on: January 09, 2012, 11:08:34 AM »
Trector, I'm glad your husband was alert enough to save your life! What a great love story!

Shade, I used to take Adderall for my ADD before I was dx'ed with Sjogrens. I thought I was allergic to the medicine because I could only take 1/2 a pill every other day or I'd get what I now call a flare -- migraine, flu-ey feeling, fuzzy vision. But without it (prior to taking Plaquenil) I couldn't function a full day at work. Is the provigil and/or nuvigil made of the same stuff?

Soy, this sounds really great! My dr's office has a paper of that sort which is a "near miss." It's to be completed for each appointment, but it seems to be for his arthritis patients mostly. A lot of the stuff doesn't have anything to do with sjs. I find filling it out to be annoying since it doesn't ask a lot of the questions I'd like it to ask.

My vote is to call it Fatigue Quotient -- FQ.   8)

Will you be able to make it available to those of us who PM you???   :D
Female, 60
Sjogrens and subacute cutaneous lupus. Flu-like symptoms, mouth ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, Mary's Magic Mouthwash, carafate.