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it has improved sometimes, but so very slowly

it's still bad enough that i am looking into long-term disability until retirement (3 yrs)

appetite is a big issue as well

anyone else have the ugly fatigue and still waiting for the new life that transplant was going to bring (and, yes... i am still here,,i would never diminish that miracle)

 

paul;

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  • Movement is energy.

    Last year I was in a fatigue stage for over a month where I would wake up tired and go to sleep tired. I got fed up with it that one morning when I decided to just wake up as soon as I opened my eyes. I got to the kitchen and drank a whole 500ml bottle of water and got out of the house and went for a run/walk. Best decision ever, ever since then as soon as I open my eyes in the morning (it could be 6am or 8am) I get out of bed and do something, read, news, run, cook ect. I feel full of energy, now. and when I stop doing all that I go back to the fatigue.

    Stand up as soon as your bodyclock tells you to. Make things happen and dont wait so much for that energy to come to you because you are the one who has to find it. 

    Create your Motivation. This may take up time but with effort it pays off.

    Get into a healthier Lifestyle. Eat more veggies, drink more water.

    Your body is the only thing that you really got, listen to it, change a habit, ask yourself "why".

    • You are right. I also have more energy in the morning. So I do exercises in the morning.
  • I can sleep all day long when I have my days off from work. But after drinking coffee or tea, I feel totally normal again. I take a few naps during the day.
  • Yep. This can be frustrating.

    My transplant - living donor, no dialysis - was awesome. But after three years I was shocked to find that the cycle of "superman / chronic fatigue" seems permanent.

    My wife and I are very medically literate and never stop fighting to find out WHY I go so low. It seems that many things can cause it.

    I speculate, like others here, that when I have a cold or other illness there are no symptoms - just extreme fatigue.

    We have had success -sometimes - with transdetmal magnesium. So that works... if magnesium is the problem.

    It makes it hard to have a career though. I have had to resign my Sr Director of I.T for an international videl game company because of it. I have started a home business that COUNTS ON my not being available all the time. I do the "magic" when I can but have employees do the actual running of things.

    I hope others will add their experience so nephro can see we are not just lazy. We need recognition, I think, that this is a real issue.
  • Yes I am. I'm excited about the kidney but I wanna feel good again. I have a cough I've had since transplant. My fatigueness is terrible. I've had kidney since feb82017. Is this normal?
    • Dear Cynthia,

      I had pneumonia for more than a year recently (I got a multivisceral transplant in 2005). It only really manifested itself through a productive cough, fatigue, and once in a while I would get a fever. Have you seen a doctor for your cough? Perhaps it might be a good idea to get a chest X-ray or CT scan of your chest to see if your lungs are okay. My pneumonia was monitored through these tests. I am not completely sure what caused mine. I was put on several antibiotics which did not make it go completely away. It seemed to have perhaps exhausted itself out finally. It kept abating and then returning until it just did disappear, but it took a long while. Taking something for non-acid reflux may have helped, but it already seemed to getting less before I started that medication, so I am not completely sure if aspiration was the cause or something else. It has been harder to diagnose me at times because I tend to express less symptoms since taking the immunosuppressant Prograf for my transplant. I hope that your doctor can help you figure out the cause and get you to feeling better soon. Many hugs are being sent your way on the wings of hope.

      Warm regards,
      Bobbiejo 

      • Thanks love. He did an xray last week and asked if I smoked. Which I don't. Then he said it looked as if something white particles was at bottom of my lungs. I use to work at a lighting company 20 yrs where we painted the fixtures and I was in contact with paint alot. Never required to where a mask. He think that's it. Gonna do a ctscan to make sure and try for meds
  • The times I have had extreme fatigue was when something was out of balance in my life or my body. On my day where I feel oh boy let me take on the world and do everything........I can keep up this pace and then 2 days later I am have nothing left. So I have through the years tried to learn how to pace myself which for me is not easy....eps when I was working full time, being a mother, a wife all hence that comes with that. Then there had to be time for fun too! 

    Other times of extreme fatigue was because something was out of balance in my body. For me it was not drinking enough water or not eating enough. So over time this would make me tired and I would be at a lost as to why I was so extremely tired......it often turned out I was so busy doing and running I forgot to take the time to take care of myself and eat a banana and drink hence I would get dehydrated.

    Other times it was because I was ill and it would take me much longer than the average Joe to get my steam back.....what took others a week to get over an illness for me would take weeks and even a month.

    And there are other times that I call "empty bucket" this is when you are spending weeks caring for others and constantly giving to others and when it comes time to give to yourself you have no water left in your bucket for yourself to drink....hence you are dry and brittle....you need to give to yourself by doing something for yourself even if it is just 15 minutes a day to bring joy to yourself.

    Then there is depression of a sorts that can make one feel extremely tired. Having a chronic illness like most of us have here takes a toll on us over time. Our health is in a constant roller coaster ride and our bodies and minds are connected.......this can cause extreme fatigue.

    So what I have learned to do to deal with fatigue is to listen to my mind and body, and to be an advocate for myself with my doctor's when I know something is not right in my body. I for one get clues if I know I am sick because I get nightmares when I am getting sick or not listening to my body. I also find I get cranky before I get sick and seem to be mad at the world and then when I look back when I am sick I say I should have known I was getting ill because I am rarely angry at the world. 

    Not sure any of this applies to you......but this is what I have found out through the years of dealing with chronic illness and it correlation with fatigue.

    • You hit the nail on the head, and I believe you are right. Listening to our bodies is one of the best ways to beat what ails ya! Thanks for the reminder!

      • Hi There.

        I am in almost the exact same situation. I am almost 2 years out from a kidney transplant ( which I got from my sister before dialysis became necessary). Of course there was a dramatic improvement in my physical state, still I have long bouts of tiredness

        I was very athletic before the kidney failure kicked in ( entered 100k cycling events), but am really struggling to get fit again because of the tiredness. My Neph says go for it, and even wants me in the transplant games this year.

        I will try the suggestion of more liquids, but am really struggling to overcome this tiredness, though I hold down a senior IT job without mush issue. I know I am blessed, Thank God.

        JP

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