Having chronic pain/fatigue is quite challenging for those who are ill. It does require many changes in our lives, as we can no longer do certain tasks or other things considered 'normal' without a huge amount of effort.
Have you taken measures that would reduce your pain/fatigue? This can be in the form of taking better care of yourself, getting more relaxation time, therapy, etc. What changes have you made in your life and how has this helped you get through the day? Maybe by sharing some helpful hints we can gain useful methods to decrease some of our symptoms and make our day a bit easier.
It has been a battle to make the changes that had to be made in order to be able to function the slightest. My meds have been upped several times, and I wasn't able to get rid of the Ultram, my overall pain was excruciating!! I will not try to be Doctor Angel ever again...:) I have to be very careful during the day so that I can fuction the next day and so on.
I rest 75% of the day, and do a certain room or laundry or whatever I have lined up for that day. We have been blessed over the years and I have had a housekeeper since my kids were small, Maria has been with us for many years and she is my rock. She makes sure that I don't overdo, but sometimes it slips up on me.
We changed our diet, and that has helped so much, I try to swim everyday, but somedays I can't stand the water to touch my body. I tried massage and was laid up for a week, so I don't dare try that again. I think the most important thing is that I have made peace with my disease. I give myself time outs during the day and put my feet up and just close my eyes. Other than what I have written I just keep on hoping and praying that a cure will be found and then relief would be insight.
I HAVE NO IDEA IN WHAT TO CHANGE OR DO OR ANYTHING CAUSE IT SEEMS LIKE ALL I CAN DO NOW IS SIT IN MY RECLINER AND THAT IS NO LIFE AND IM
SICK OF IT! BEYOND! MY 23 YEAR OLD SON WAITS UP ON ME ALL THE TIME AND IT MAKES ME FEEL SO BAD CAUSE I KNOW HE WOULD LIKE TO HAVE HIS LIFE BACK ALSO. THE LAST FEW DAYS HAVE BEEN VERY BAD FOR ME BECAUSE I RAN OUT OF PAIN MEDICINE AND I FEEL LIKE IM DYING FROM THE PAIN AND WITHDRAWALS. IM SO WEAK THAT I CAN BARELY MAKE IT TO THE BATHROOM. BUT BEFORE ALL THIS I HAD TO PACE MYSELF AND NOT OVER DO IT BUT THAT CAN BE HARD TO DO ESPECIALLY WHEN YOUR FEELING HALF WAY DECENT AND NEED TO GET THINGS DONE ...I WANT TO KEEP DOING THINGS WHILE I WOULD FEEL HALF WAY DECENT. BUT WOULD PAY FOR IT LATER ... THEN I WOULD BE DOWN FOR DAYS AT A TIME! IM AT THE POINT NOW WHERE I HARDLY DO ANYTHING. NOW I JUST SIT IN MY CHAIR AND THATS NO LIFE! GOOD LUCK TO ALL!
PS ... I GUESS I REALLY DIDNT ANSWER THE QUESTION! CATWOMAN
Along with having FMS/CFS I became disabled due to an injury in 06. So my lifestyle has changed dramatically.
I pace myself most days. I can no longer clean the whole house in one shot. I do a little each day and I have stopped being a 'neat freak' over everything. When i'm tired I relax...I don't try to force myself to do more than I am able to do. Hubby usually grills dinner, so that makes for less dishes to wash (taste better too, lol). I have had some relationships that I needed to separate from in order to stay healthy. Those that cause undue stress in my life are ones that I don't need. I do what I can to lessen any type of stressors or things that cause me 'sensory overload'. Learning to shrug off the little things in life also helps. I take my vitamins, medication and colloid silver faithfully...each day. I'm trying to get in the habit of doing detox baths as well. I enjoy being outdoors, but sometimes the humidity makes me feel worse. We purchased a pedestal fan and use that during the summer when i'm sitting on the deck. We have a small spa that can be used during the months where the temps are over 50, and it is very refreshing to my muscles. Even if my body isn't cooperative, I try to keep my mind busy with online games, puzzles and researching things of interest. I find that any type of distraction is good for me.
Like Angel said...I have made peace with my disease. I don't like it, but i've accepted it and will not let it dictate my life. I think this is a huge step towards regaining some type of control over this illness. I take it one day at a time and try to find something to be grateful for with each one.
Hi, how do you respond to I suppose well meaning people who say..."well, you should just go on out to eat with us or do something else, as you're going to hurt whether you're at home or out with us." I tell them it's a little hard going places with a heating pad, hot and cold compresses for my head, neck and shoulders and when you can hardly stand up, much less go out, walk 10 miles, etc. God love the "well doers" I suppose. Willow
I understand willow. Some just aren't empathetic to others needs. They see us looking fine, so they think we must be.
My response to them would be "I'm sorry, but I feel most comfortable when i'm at home where I can sit and relax as opposed to sitting in a hard chair or walking long distances. Why not order take out and we can enjoy it here?" I do think your friend mean well, but they just do not understand what we go through. Invite them over or visit at their place now and then. It's less stressful for you and you'll be more comfortable.
I was diagnosed 16 years ago. The anti depressents did no good and it was looking bad. I asked my Dr about mineral or vitamin deficiencies and we decided I would try magnesium supplements. The pain washed out of my body in 3 days. I was out in a parking lot and has to stop to let it happen. I then went to a health store and got books on fibro and made a list of supplements I felt would help. I began them one at a time and took 6 for at least 6 months and it made a huge difference. I still have some pain and have to watch but I can function. I also worked with a personal trainer and that helped my balance get back on par - I actually made the 2 mile walk I used to do twice daily with ease and I made it and could walk the next day just fine. amazing. What I am saying is be pro active. The drs either are not sympathetic or have no clue.
I haven't been officially diagnosed with Fibro yet and if it isn't that it's something else that prevents me from working and living a normal life. So far I have found out that I cannot overdo myself, even when I think I'm getting better, that usually ends up with me in pain and sick and in bed. I also work very hard on eating right (which was really hard this weekend and believe me I am still paying for it) and I putter around the house. I'm scared to exercise because how sick I've gotten because of it but I want to try water aerobics and weight training. My biggest problem is going to be not doing to much at once. I used to be very physical and I exercised after work everyday so I need to allow myself just a little at a time. I'm going to am for 15 minutes a day (I know sounds soooo small) and work it up from there. Hopefully once I start seeing the specialist I can get more advice on how to live again with whatever I have.
There is hope out there we just have to take it day by day.
I have not been dx with anything yet and I feel as though I am going crazy. My muscles hurt, joints ache, very anxious, muscle twitching, skin feels like it has 1000's of fire ants crawling on me, have no appetite, throat and ear bother me( drs tell me there is nothing wrong with my throat or ear). This has been going on for 9 weeks now. Just made a call to my pcp because of my anxiety and to see where we go from here and the nurse told me the dr needs the report from my neuro before we can do anything else and of course the neuro's report is not ready. I don't know if today is just a bad day because of the weather - hot, humid and ready to rain. Any suggestions for me on how to get thru all of this? Sometimes I feel like checking myself into the hospital and telling them not to let me out til the find out whats wrong with me, lol
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