There is a test that is done ( mine took 6 hours the first time and 3 hours the next) that that call a neuropsych test. It is a lot like a really long IQ test but what it does is see how each part of your brain is working and what, if any, damage has been done. When mine was done they found that my short term memory has been damaged (borderline deficient on the 1st and waiting the results of the 2nd) and my motor skills have been damaged on both sides but the most damage has been done on my right side (deficient on the right and borderline on the left). It also found that I had depression (ya think?) and my last MRI showed a decreased blood flow to my brain. So the answer to your question is yes, they can be diagnosed and I am afraid that I am stuck like this forever. There are memory building things that I can do to try and help but honestly they only upset me because they are a constant reminder of how far down I have fallen.
I broke down crying during my first neuropsych partially from relief that there was proof and partially because I knew my life as it had been was over. I had hoped that I could one day go back to work and be able to grasp the legal documents that I had been reading for years and fixing the issues that I had become so good at fixing. This showed me that it would be no more. It doesn't mean my life is over but the rest will be very different from what I had known before.
For me, it's like I'm covered in a lead blanket, almost like somebody dialed up the Earth's gravity to twice what it should be. Like you, I'll go lay down exhausted only to find that I can't fall asleep. It's incredibly frustrating. I try to tell people to not feel guilty about not being able to do things with family, but I know it's easier said than done. My fatigue lasts for around two days, and then I seem to get a bit of spring back into my step, but never quite feel 100%.
Originally Posted by Islablue
wow thanks for that great info Mari!
My fatigue is sometimes embarassing. I go to church and sit in a meeting, and no matter how interesting the speaker, or how much sleep I got the night before, I still sit there with my head bobbing, literally fighting to keep my eyes open. It's only an hour but for me it feels endless, and I usually make some excuse and leave early.
I hardly have the energy to get through a movie or TV show without falling asleep. I know I had to have been snoring, and my kids and DH are so used to it they just let me sleep. I sit in a chair in the middle of the day and doze off. I could just say Im taking a power nap but, I get no power from it. With all this dozing and head bobbing, you'd think I would have no trouble sleeping at night, but, just the opposite, I often have to take something just to sleep. If I don't I'll fight the whole night with wanting to sleep but the pain in my body keeps me awake. By morning I am so stiff and can barely get out of bed. I sleep over 9 or 10, or even 11 hours, probably from the sleep meds, but still feel like I haven't slept in days. I force myself to wake up and get out of bed, but, end up plopping down in a chair really wishing I could just sleep.
I always struggle with sunlight putting me to sleep. Ive missed so much on our vacations because I sleep through so much of it. I have no energy to go out and play with my children, and Ive watched them grow up from a distance, always thinking that Ill have time to make up for it, and yet, they're growing up so fast, time is slipping away from me. I live on a very popular road for joggers, and I watch them run past my house all day long, just wishing I could get out there and run. To be in that great shape that I once was, and have the kind of energy to run for miles in the sun.
Everything seems to take more and more energy to do. It makes me tired just to think about it.
For me, it's like I am isolated in an invisible barrier. Almost like an egg shell. I seem to be weighted down with wet heavy blankets in there. The things that try to come through are often deflected by the shell and what does get through is often muffeled by the blankets. It's suffocating. When I am able to break free and grab the fresh clear air I am able to function like I used to, without much thought of doing it or fear of doing it wrong. Most of the time the pressure of the fatigue hurts everywhere. My head, my eyes, my joints, even my own thoughts sometimes seem too loud. It's depressing. I can't see the sun when it's like this and I just want to sleep and sleep and sleep. It's very hard to even get out of bed. The soles of my feet scream at me for flexing or stepping. When fatigue is at it's worst, I look a mess too. Even if the clothes are on right, or fit right, or are freshly laundered, I still look "off". Balance is hard when the fatigue rolls in. It comes like the waves called by a tide I can't see. I would love to be able to throw off the cloak of wet blankets and break free of the shell and on the days I feel like my old self, on those rare times when I feel like me a few days in a row, I forget how crippling fatigue is and I run to the outer limits of my new self trying to soak up every moment of ableness that I possibly can before the binds and restraints reclaim me. Fatigue is like my worst friend and most intimate lover all wrapped into one and as much as it loves me, I hate it.
If there was an award here for the most thoughtfully written and insightful post, you would receive it Sandy. Bravo.
Originally Posted by SandyR
PS-I do have to disagree with you on one point however...
I don't think you look a mess.
Does anyone have any suggestions on how to beat the fatigue? I need to accomplish things and I don't have the energy. I just want to lay here and sleep - a very broken sleep - unless I take a strong pill thani can't wake up with a clear head.
Need some ideas??!!
Oh Nonna I wish I could help but the only thing I know is to rest/sleep it off. I did read something the other day that explained something to me.
Overdoing: You overexercise or overwork when your are feeling good, and then feel worse for days afterward. This can cause serious problems. In healthy people the body shuts down when the anaerobic threshold is reached as a lot of pain is experienced. This warning does not occur if you have an autoimmune disease. Instead, the body continues to exercise and experiences no pain as the lactic acid builds up, and the body ends up recirculating carbon dioxide. This is not a healthy thing to have happen to you. It is important not to push too hard when you start recovering, or this will set you back and wipe you out.
I know I do this. The days I feel good I think I can take on the world and then I pay for it big time. Now I know why!
Nonna I am with you. I want to know what can be done for fatigue!!!! But I haven't read any constructive advice on this forum on how to over come it, apart from not over doing it. I have not been able to overcome anaemia for 6 months now, despite increasing the dose of iron tablets, eating healthy, exercising and keeping my stess levels low. So I have finally come to the conclusion that this is how my life is going to be from now on, and I suppose I just have to learn how to deal with the constant fatigue.
Just wanted to ask everyone...are u fatigued all the time or just when you're having a flare? I haven't experienced fatigue as a symptom of lupus even when I had my flare...I had difficulty sleeping at night but slept during the day instead (luckily I didn't have to work). I have noticed I wake up often in the night but don't feel tired in the mornings.I was told by the docs that steroids can cause sleep disruptions.
Here's hoping you all feel better (and not tired) very soon!!