Tired of being tired all the time

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i am new to these discussions but I do know how many of you feel. I have mentioned that I was diagnosed with mixed connective disease, lupus, fibromyalgia and who the hell knows what else. I can't work becuause if I sit to long, my legs start falling asleep. If I stand to long, my legs start aching. I feel exhausted all the time like when I wake up in the morning, I could just as easily go back to bed and sleep my entire life away. I wish there was something in a bottle that gave you energy. I miss my old life when I used to work out all the time and had enough energy for 10 people and then one morning I woke up and couldn't bend my leg back, it just wouldn't work so my family doctor sent me to a rheumatoidologist and he is the one that took all my blood from my body, that's what it feels like sometimes, and gave me the great news of having all these diseases but no medication seemed to work. I went to another rheumatoidologist and he put me on Lyrica which helps my upper joints but my legs were in such pain I felt like it was to much to even walk down the hall. Now along with my family doctor, my rheumatoidologist and my pain doctor, I take Lyrica for joint pain and oxycodone and fentenal patches for pain, especially when my mixed connective disease starts up, it just brings my systemic lupus to life and I get the butterfly rashes mostly on my upper arms which adds to my stress which makes my fibro flare up and gives me pain in my legs and then it just starts over. It seems to be a cycle especially when it's hot. I also start sweating like I was in a sauna all day just on my head and face. People look at me like did you know your sweating like a pig. It's embarrassing but I don't know what to do about that so I put ice on my head at night to keep my head cool so I won't start swearing. I've never had that problem before but only since these diseases came and decided to stop on my little doorstep. I am a true believer that stress can cause all sorts of bad things including diseases. I am just going to try to start yoga but I have to absolutely force myself to do this. I start next week. The worse thing I could have done 12 years ago when I was diagnosed with all this crap was to stop exercising. That was so stupid now it's taking me forever to even begin it again. Life sure sucks at times and you wonder what the hell you did to deserve this crap but it doesn't matter we have what we have and with others support it will help us all, I hope!

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5 Replies

  • Posted

    Hey kristi i understand ur problems im in same boat n miss my old life i try motivate myself n set myself tasks wich i try getting done to keep me going i hope u better
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    • Posted

      Hi Amber

      I was just replying to Valerie saying I need to have the strength to go to yoga but, and there always seems to be a but, it's so very hard. It's hard enough just to get up let alone try and exercise but I think it's how bad do I want it. Some days I dont, I just want to go away but I know that's dumb and selfish of me. My kids need me so I'm going to go to this new gym even though it's 80 bucks a month but it's a small price to pay to help myself. All my crap comes from stress. I have always been a worrier wether it's about a dog that was lost or a child who was harmed, things I had no control over but yet I wouldn't be able to sleep just thinking about a poor dog alone all night. It's rediculous the things I worry about. Willy kids be ok, will they be happy, will they get hurt by love or a friend, will they have friends. See, I worry about everything. When I go to yoga, they said it should help with relaxation and learning to meditate and get these things out of my head so hopefully it will help with all of that. Anyway thank you for your reply, it always feels a little better knowing people out there know how we feel. Take care of yourself and hang in there.

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  • Posted

    Oh kristi you are not alone, I feel exactly as you do. I was

    diagnosed with lupus and Sjogren's in Jan. and am now being

    tested for Addison's Disease. I used to do 2 aerobics class and 3 dance classes a week before all this. The best I can do now

    is walk when I can. You are right about exercise we really should

    do what we can when we can. It is all about pacing ourselves.

    Like you I find it hard to accept that my old life has gone. I'm

    going to have a go at Yoga too.

    I do hope things improve for you kriste.

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  • Posted

    Hi Kristi

    It is horrible to be in this position. I was diagnosed with Lupus and Sjögren's Syndrome over 10 years ago. At that time I was told to find a painkiller I could live with and stay positive. I was so outraged at this inadequate advice that I complained to the Chief Executive of the hospital. Now I have found many ways to help with the tiredness and pain. I find what I eat has a big effect on how I feel. I now avoid bread except sour dough or soda bread. I try not to eat potatoes or pasta and I restrict all processed food. It is hard to stay positive but yoga definitely helps - just the gentle kind with a couple of inverted poses. I also find that swimming is good.

    I try to do something nice every day even if that is just sitting in the garden or walking tothe park. I am in pain all the time and walking is really hard but I think it is really important to move around without completely exhausting yourself.

    I hope this helps.

    Good luck

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    • Posted

      Hi valarie

      I don't know what's wrong with my damn phone but everytime I try to text you something goes wrong so here it goes again for the third time. Thank you for God comment on my story. I would love to know whT you eat. I was saying j know this guy who found a doctor who gives. Him shots to deaden his nerves and he is now off of all his mee. I immediately called her and she told me she couldn't do anything for me because his was back related and there wasn't a shot that would help my kind of pain but what she did tell me was she absolutely believe that stress causes all sorts of things including diseases she said wh knows several people that have actually reversed their diseases by exercising and yoga. I am going to go see a new gym that has yoga classes. Sounds so simple but where do I find that push on me to just do it. Everyone on my crapy ex husbands side of the family kept saying just do it, it's so easy. I wanted to say yea just like it should be easy for you to get off your normal ass and lose some weight? But why. Say that, it's rude and that's not me but I wish people could understand the strength you have to have to actually do it. I have to find that strength in me. I feel like I'm just waiting to die, I'm not living my life and after losing my 19 year old son a year ago on September 18th, I need to do this for him but for me. I need to start living but it's so damn hard when you feel so tired all of the time. I want to find a partner that would go with me to yoga. Someone that could push me but I know ultimately it's up to me. I know I can get hopefully most of my life back but for the last 10 or 11 years Ive been so depressed with the man I was married to. I should have gotten out sooner but I can't take it back. Anyway thank you and please let me know what you eat and how or what do you do to have energy? Thanks again and take care of yourself.

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