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I first started having symptoms when I was 16 and now I'm 28 and I have been diagnosed for 2-3 years now There is just so much I still don't understand. My doctor says my blood work is looking really good, I'm on my medication and I still don't feel back to normal. I have zero energy, headaches, pain, joint swelling... I feel useless. I work full time and every minute i am there i feel like i am asking (or begging) my body permission to hang in there. I have no desire to fix myself up anymore. My husband is truly the best! He helps soooo much. He listens to my rants and is very understanding but recently I have been holding my feelings in because I feel guilty about complaining all the time. I ask my doctor why do i feel this way if my test are good and he tells me that maybe i need to go out and exercise. What part of Zero energy doesn't he understand. I am so frustrated and crying as i write this. Everyone looks at me and sees no outward signs of pain and just assume I'm OK or its in my head. I feel like the doc thinks I'm making it all up. I'm starting to doubt myself. Is it me? I feel like I'm going insane. I have so many wonderful things to be grateful for in my life but yet I'm not happy. I've looked for a new doc but there are not many in the area and everyone says the one I'm going to is the best. I am sorry for just rambling on and on but I needed to get this all off my chest.
Time to get ready for work,
DSRM
Time to get ready for work,
DSRM
My last blood tests looked good but I still feel rotten. When I can muster then energy to do more than just what's necessary, I try to exercise. I'm not saying exercise doesn't help-- it's very good for us-- but when it's too taxing to walk to the mailbox, I can't figure out how on those days I'd be able to work out.
I wish you blessings and good days.
I hope you feel better soon DSRM. :)
Dont beat up on yourself. Weve all been where youre at. And youre not useless so get that thought out of your head right now. Ive also been told to exercise when I dont even have the strength to talk. Funny thing is exercise works. And Im not talking about the going to the gym type exercise just something to get the endorphins going. Ive just sat in my chair and raised my arms up half way, one at a time, for ten counts. (Counting is important. I find it keeps my mind occupied so that it cant work on defeating me.) Ive also laid in bed and have done the same thing with my legs.
Some times our minds need exercise too, and need to be reminded whos in charge. I do this through mindful mediation. When Im mindful, I remember that its me who controls my thoughts and the story I live my life by. Believe it or not, thoughts use energy, and when youve only got so much energy you need to use it wisely. In other words, dont waste your precious energy on negative thoughts.
One more suggestion, and youll hear many opinions on this subject but I take Provigil. It not only gives me a boost in energy but it gave me back the quality of my life. Google it and decide for yourself (especially if you are having to work full time).
In the interim, know that you are quit sane (just frustrated) and you do have happier days ahead of you. So today, lift up your arm (at least once) and repeat, Im going to have a good day today because paintacure told me so.
Take care my friend.
I agree with paintingacure, exercise makes me feel so much better (well better anyway). My exercise consists of walking and some stretching. I also have to take breaks in the day just to stretch my back and legs, or they become completly numb with pain.
I do understand all about how you feel, people just don't understand... my family included. It's definetly something we kind of have to deal with alone.
I hope you get feeling a little better soon.
:)
I think youre having a better day already. :-) Just image, if everyone told themselves that they were going to have a good day because "Paintingacure said so," what wonderful world this would be. (lol)
P.S. I hope youre laughing with me. Don't make me laugh all by myself. (lol) :-)
You have found people here who TOTALLY understand what you are going through. That alone is a blessing as no one else (even dr.s at times) understand how hard it can be to feel horrible all the time especially when you look ok. They just dont "Get It" and its important to have a place to vent your frustrations. Most of us have been in your exact shoes. I know I have. I had a toddler when I flared really bad this time around and felt so sick that I just wanted to die. I honestly dont know how I made it thru most days and did ALOT of crying which is not typical for me.
I have been on steroids for 2.5 years now and hate to suggest it to people but has your dr. tried you on a steroid pack to see if it makes you feel any better? This can show if you do have inflamation going on and your disease is active. Blood work can be totally inaccurate with us at times even if we arent on steroids. My rheumy has treated me for 11 years now and doesnt go by my bloodwork any longer. He goes by the way I feel. It took a while for him to realize this though, crying in his office desperate to feel better and having him finally try me on something else that made me feel MUCH better. This is how he realized that I can be flaring even if my blood work doesnt show it. The same may be true with you.Also, sometimes when you have been on plaq. for a long time it stops working like it use to. There is just so many things that can be going on.
Exercise is hard when you dont feel well. My rheumy doesnt even recommend it to me because I feel sick upon physical exhurtion when Im flaring. You may only be able to tolerate a litle bit of execise or it can exacerbate your symptoms/flare. At the same time, sometimes just getting out of the house and doing something calm and peaceful can make us feel better. Fresh air and a change of environment can really help at times. I need to take my own advice on this one as I become a hermit when I dont feel well. Paintingacure has given me GREAT advice on thinking differently as sometimes we can become our own worst enemy.
I hope you start to feel better soon. Please speak with your dr. about other options to at least try. Maybe you are having a fibromyalgia flare and may benefit from one of the new drugs that help to target the symptoms of it. Just know you always have us to vent to and ask questions to. Sorry if this seems rushed. Im trying to get thru some posts before my "TIME" is up (meaning ryan needs me.LOL)
Hugs
Hugs
Take Care
xox
Sylvie
What paint said is so true - our words and thought are very powerful.
My news years resolution is to say every day:
"I'm getting better and better every day in every way."
I also try to find something positive in every day.
Exercise makes a difference with how I feel mentally and physically.
Walking and yoga is what I love to do. It's really hard when you work full time but maybe you can do 5 minutes of stretches and take a ten minute walk.
Motion is lotion to our joints.
My pain decreases when I walk but then returns when I'm done but doesn't get worse. The endorphins kick in and my mind and headache always feel better.
I'm not able to work right now and I'm not well enough to do much of anything. My priority every day is to exercise. I walked today, took a bath and that's all I can do but it's a great day because I walked!!
I hope we all feel better and better every day in every way.
Blessings.
You ladies are the best!!!
DSRM Now see what you've gone and started (lol). Luckytipp, I love motion is lotion. We can make a rap song out of this (lol).
You ladies are the best!!!