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Thread: the tiredness

  1. #11
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    I vacillate betw feeling like I need to sleep 12 - 14 hrs and feeling okay on the normal 7 to 8. But I'm not dx'ed with anything yet, so there's that <shrug> Back to the round of specialists in the new year. If I have to work a double shift, it's not so much the fatigue I feel but the leaden-ness in my legs. I can still go home and goof on the internet or watch TV with my husband so it's not like after a 12 hr shift I want to fall straight into bed when I get home. It's not that sort of fatigue. I guess I am not explaining myself properly.

    What bothers me is the ennui - I just can't seem to be arsed to get in gear half the time. Maybe that's a form of fatigue as well?

  2. #12
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by SleepyInSeattle View Post
    I have Lupus, Sjogren's, Raynaud's and APS...


    ...Snipped for Brevity...


    ...but "It Is What It Is".

    Best of luck to you.....I hope some of that helps.

    Sleepy,

    I just wanted to say that you've written an excellent post!

    Well said.

    Rob

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  4. #13
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    I feel the same as many comments here. Have you looked up the "spoon theory" as it is a wonderful way to explain and accept limitations of our daily life. Enjoy reading and I use it as to how to explain to friends and family how you manage each day. Good luck and go on Internet and look it up. I wish you well!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    I saw that video about the spoon therory just recently. If a normal person has 10, then I have about 4 with my medications, I'd have 0-1 without taking anything. The disease is so exhausting and painful.

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    Quote Originally Posted by Manderson View Post
    I vacillate betw feeling like I need to sleep 12 - 14 hrs and feeling okay on the normal 7 to 8. But I'm not dx'ed with anything yet, so there's that <shrug> Back to the round of specialists in the new year. If I have to work a double shift, it's not so much the fatigue I feel but the leaden-ness in my legs. I can still go home and goof on the internet or watch TV with my husband so it's not like after a 12 hr shift I want to fall straight into bed when I get home. It's not that sort of fatigue. I guess I am not explaining myself properly.

    What bothers me is the ennui - I just can't seem to be arsed to get in gear half the time. Maybe that's a form of fatigue as well?
    Pain can cause that as well. It's not a form of fatigue if you don't feel tired.

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    Quote Originally Posted by shelby View Post
    Pain can cause that as well. It's not a form of fatigue if you don't feel tired.
    I think it's a mental fatigue v a physical one.

  9. #17
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    Lupus/etc sometimes gets misdiagnosed as depression, but sometimes depression gets misdiagnosed as Lupus/fibro/etc....if your symptoms seem as much mental as physical, don't rule out depression (either on its own, or along with an autoimmune issue), and don't ignore it!!!! And of course feeling crummy all the time can MAKE you depressed - as well as the other way around.

    Because insurance often doesn't cover mental health care as well as it does purely physical issues, "regular doctors" have become very quick to diagnose and proscribe medication for things like depression. They don't, however, typically have the training to properly handle all the manifestations of issues like depression, which are complicated and have both biochemical and emotional components. Just as you need a specialist (Rheumatologist) to diagnose and treat (or rule out) something like Lupus, you need a specialist in mental health issues (Psychologist or Psychiatrist) to diagnose, treat, or rule out something like depression.

    For some reason, people attach fear and shame to seeing a Psychologist or Psychiatrist. That's a shame...because they are usually really wonderful people (my family is full of them!!!!), are not judgmental, and can be incredibly helpful. They are simply doctors who are interested in a particular set of issues, the same way any other doctor is - and they know more about them.

    I am not saying that is what's going on for you - I don't know you at all - but if you are feeling like you have deep mental fatigue and lack passion and joy for the things that you used to enjoy, it might be worth investigating. There might be a biochemical cause that is fairly easily dealt with!!!! And again - not saying that should replace pursuing things with a Rheumatologist...sometimes you have to attack this stuff from lots of angles to figure out what's going on. Pain, A-I diseases, and Depression share a lot of biochemistry and symptoms, so it can be tough to puzzle out.

    I hope that helps...even if it's just to rule something out....

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    There is also another point! Many of us who have Lupus or an autoimmune condition suffer grief which is often diag as depression! The grief we go through is caused by the loss of our life style and mental and physical capacity.

    I argue at some of these self help meetings that for grief we must go through the process of this loss and get through to the other side and enjoy our new life style and are then happy with our life as much as we can handle. We must always live our life to the fullest and enjoy what we have but looking back is ok for a short time but we must remember to move on. The death of our previous life must be remembered as well as a loss of a loved one, with happiness for those experiences. We must find joy in our new life with these conditions and allow ourselves to go through the process of grief without any reluctance or hinderence of miss diag of depression. We are entitled to go through our grief and never be ashamed of it, go through the process and come out the other end as a positive healthy attitude to enjoy what we have now!

    Sorry I get on the band wagon on the term of depression being attached with our conditions in stead of grief.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Quote Originally Posted by Desleywr View Post
    Sorry I get on the band wagon on the term of depression being attached with our conditions in stead of grief.
    You make a great point!!!!! I totally agree - they are distinct - but sometimes they overlap, too.

    My GP misdiagnosed my symptoms as depression for a long time - even put me on meds. I knew I wasn't depressed - I should have been more adamant about it, but I was too tired and confused to fight. I questioned my own self-knowledge - I KNEW something was wrong, but I didn't know what, so what the heck, I figured - maybe I AM depressed and just don't know it. The meds made absolutely no difference in anything, so I quit them, which ALSO made no difference. I knew I had a great life - I just felt crappy, PHYSICALLY, and that was making me frustrated and sad - but yeah, that is very different from depression.

    Finally getting a diagnosis of the A-I issues relieved a lot of the mental anguish, because I finally knew what was really going on. Of course I do get scared and sad about the diagnosis, but overall now I feel BETTER about things because at least I have something to work with.

    I think many of us get the "Oh, you're just depressed" routine, even when we KNOW something different is wrong with us.

    On the other hand, with lots of family in the mental health field, I see that Fibro and Lupus are very "fashionable" diagnoses these days (which is probably why it's tough to get an appointment with a Rheum...), and they see people who may or may not actually have an A-I disease, but who are DEFINITELY depressed. They need care for that, regardless of anything else going on. Being treated for an A-I disease will not help true depression if you have it, and the symptoms overlap a lot. A good mental health professional should be able to tell the difference and act appropriately....and honestly, a regular doc should, too, but the training MD's receive in mental health issues often amounts to a lecture from Pfizer on the benefits of the latest drug. (Okay that's an exaggeration, but there's a lot of misconceptions about identifying depression, even among professionals).

    I guess I just hate to see people suffer, and would encourage anybody who is grieving, sad, depressed, or is just having trouble adjusting to a diagnosis (or having family issues around it) to get help if they need it. It can be a life-saver, and can make your quality of life a whole lot better, if it's the sort of care you need. Take care of your body AND your emotions!!!! : - )

    (I want to just reinforce that I am not trying to diagnose anybody or say that the original poster here is depressed - but just following the thoughts and other posts about the links and distinctions between physical and mental pain).

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    "Lead blanket" I like that! So very true! Personally, I've gotten very self protective of myself in every way. Assertive is a new word in my vocabulary. My advice is to know yourself. Know when you are your most productive, least, what tires you, what energizes you. Know yourself better than anything else. I know I'm a morning person. I will try to get as much done as possible whether it is at work or at home in the morning. I know that after 9 p.m. I'm basically useless and forget about thinking clearly so I know to get my outfit for work the next day together before 9 p.m. I know that if I don't do the dishes as soon as dinner is over, they won't get done but I always fill the sink with soapy water before I start cooking so that if I don't get to the dishes right away, they'll soak and be so much easier to clean when I do get to them. I know that if I push myself too hard, I'll pay for it tenfold the next day so if I can NOT push myself, I won't. I've learned to delegate. Hubby has learned basic housekeeping skills (there's a shocker). I've learned NOT to feel guilty about what doesn't get done. That was a tough one but once you remove guilt, life is sooo much better! I've figured out what "tools" help me: assistance devices, ergonomic office equipment, easy care clothing, comfy shoes, etc. I've learned to adapt and sometimes overcome. I've learned that when my body says SLEEP NOW, if at all possible, I sleep, at the very least, I rest. I've learned that I am my best advocate and if I don't take care of me and fight for me, no one else will. I've learned what is best for me and I don't let anyone tell me otherwise.
    "I'm going to get healthy or die trying"

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