Tips for Managing Daily Life

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Jan 8, 2008.

  1. Idahojo

    Idahojo New Member

    I just found this site today and am feeling so much better reading from all of you and not feeling so alone in this. I was recently diagnosed with FMS and am learning to deal with it. My doc started me on shots of B-complex right away and it really helps with the fatigue. I had been taking B-12 in pill form but it helped some but not a whole lot. He said that some people can not absorb B vitamins when taken orally but respond well to the shots. He was dead on right. Sometimes I have to go get them 1 a week but usually every 2 weeks is fine. I was very interested in the posts about eating Protein. A friend had said she heard something about it. After reading these tips I will try it.

    Thanks again for all the help.
  2. crazydaisy0578

    crazydaisy0578 New Member

    I am probably repeating what some have said but the best tip I can give is that you have to realize that you have to make time for yourself now. Put yourself first. I know this is hard, some with families and children can relate. Take a hot bath at night with lavender salts, take a light walk with your dog, get a massage....do something that will help your pain and lift your spirits. I know sometimes I have gone for days without giving myself a good dose of "me"time and even though I am taking medication I still feel terrible. It seems when I combine some of these natural therapies with the medication I feel better than ever. Also, talking with others (message boards, support groups), works wonders. Something about knowing you are not alone in this can comfort you by letting you share insights and helpful treatments with others!!
  3. Janalynn

    Janalynn New Member

    There are a few things that I strive for - mainly to feel 'normal' and purposeful.

    Laughter is so important. When I'm not in severe pain, I try to keep my sense of humor and joke around as much as possible. It's amazing what it can do for one's mood.

    Another thing I try to do is do something for others. Generally it's a supportive phone call or email. Just letting someone know you care about them can make a huge difference in YOUR life knowing the effect it has on theirs.

    Guilt has always been a big problem for me - so I'm always working on letting go of that. I listen to my body (or try to) If I don't have to be at work, I lay down and make sure my body gets rest. I say no to people and don't overextend myself.

    Little tips - I keep a toothbrush and toothpaste in my powder room which is on the main level (bedroom is upstairs). I also keep a notepad and pen on my coffee table by my laptop so I can write myself notes all day if I need to.

    Finally it took years to develop the habit of choosing my attitude. It's been VERY hard to hold onto that, but when I can, I try. Sometimes my pain is at an intolerable level so it's almost impossible, but on other days, I try to remember the simplest of things that bring me joy and happiness and choose to be happy for that moment at least.

    Smile. When possible - at work, around my kids and my husband (again if not in severe pain) smiling can change your world. I need to do more of it, that's for sure. Look in the mirror sometime. That's what made me decide. The look on my face normally looks terrible. I look miserable all the time. I don't like it. That is one thing I have control over.

    Great tips - keep 'em coming!
  4. stillooking

    stillooking New Member

    i saw there are alot of posts here and some were just too long to read...sorry.

    here's my tips:
    i don't have alot of strength so i use "wipes" for my cleaning and do it more often. sometimes just one table at a time or one part of the room at a time depending on my body. i also bought a magic bullet to help chopping, etc duties

    i can't cook (making top ramen's about the longest i can handle) so i bought a rotisserie (for home cooked meals) and a microwave. when i go shopping i get microwaveable meals i even get "ensure" b/c there are days i don't have enough strength to even make a sandwich.

    i don't wasted my energy fighting my body. i am on disability and if i feel i need to sleep at 2 p.m. then i do. fighting my body is wasting too much energy.

    i surround myself w/people who understand that i am ill and make sure i don't feel guilty saying "i'm too tired and can't talk on the phone/in person, etc"

    also, since i live on disability i live in a tiny studio apt (my treehouse) that is small and easy to keep uncluttered so i don't overstimulate myself at home

    and since i surround myself w/good family i ask for help w/laundry, scrubbing floors, grocery shopping.

    i have found a pharmacy that delivers my prescriptions, and have found a company that makes deliveries (since i can't drive)

    hope this wasn't too long and hope it helps
  5. gotdirt

    gotdirt New Member

    I hope to god you see this before it is too late! xanax I hear makes you feel calm and helps you sleep. but it is not meant for long term use!!! and you have to be weened off of it. my son was on it for years. only thing that would help him sleep. but he had a massave seizure!! he stopped the drug suddenly when he ran out. you can have a seizure 24-72 hours after stopping the med. so please get weened off of it!! not worth it!
  6. juliejo

    juliejo New Member

    I am now mainly housebound as suffer from both FMS/CFS/ME.
    I live a good life as best i can and try to remain positive.
    My advice is to follow the 20min rule. Do something for a while if you are able and sit or rest for 20mins. I have that written on my fridge door.

    You must however keep moving even in pain with very very gentle stretching exercises. If you can't manage that then just walk up and down the room or around the garden if thats all you can manage two or three times a day.

    Drink plenty of water as that helps flush out the toxins and helps keep the bowels regulated.

    I have now had my house adapted to make my life easier.
    I have a shower chair to take the weight off my legs in the shower and grab rails when i feel dizzy and unsteady fitted in the bathroom as well.

    Stair rails fitted both sides if you have to go upstairs. This again is exercise.

    I do all my foodshopping, clothing etc on line. I bought all my Christmas presents too on line.

    I have now bought a mobilty scooter to give me independence to get out the house on the days i feel well enough but wrap up warm as its very cold on those. I also have a wheelchair now when i can manage to go out which my husband and family push me or should i say throw me about in!!.

    Always put yourself first and never ever feel guilty for saying no to something or someone you know will make you poorly. Its a lesson that has took me a long time to learn i might add.

    Love yourself for what you are and you will be a much happier person.

    Have a warm bath or shower every day as it does ease the aches and pains.

    Hope some of this has helped some of you.

    Julia.






  7. dorothyr

    dorothyr New Member

    Hi, I was just reading your post from July and know what has definately helped me. I accidently found this. One night I was so tired and I fell asleep on our loveseat. My head was propped and my feet because of the love seat being shorter than a couch.I slept there all night and when I woke up in the morning , my back wasn't hurting. Since then I propped pillows under my head and under my knees,(pretty high). This really helped me, unless the pillows fell during sleep or I rolled off them.
    About 3 years ago, with my income tax money, I bought a posturpedic adjustable bed. It has helped me tremendously, and I no longer wake with the feeling as though poison was surging through my back. Please , try my pillow propping idea. It might take a few nights of adjusting to get it right, so be patient. I truly hope this helps you!!!
    Dorothy
    [This Message was Edited on 12/19/2008]
  8. barobinson44

    barobinson44 New Member

    I truly believe that fibro's main cause for me is toxins in my systems. Therefore, whenever I have to take an antibiotic for anything, I follow it up afterwards with a kandida cleanse. Also, if it's a strong antibiotic, I protect myself from yeast infections by taking a probiotic or eating yogurt. Both things have really helped with my pain levels along with minimizing carbs. That alone really makes a difference and I AM A CARB ADDICT. Right now I'm trying to lose some extra pounds because the extra weight also doesn't help the pain level. I'm keeping a food diary and find that if I use primarily proteins versus carbs, I don't have the cravings as much and I do have more energy. Rest, rest, rest. I have found that if I don't get the proper amount of rest, more than most, I ache more. I choose not to take prescription pain relievers because of their side effects so I really have to monitor myself. Sure makes you pay alot more attention to your body!!!
  9. elvis321

    elvis321 New Member

    I have been a "fibromite' for over 12 years, diagnosed about 10years ago, suffering about 14yrs with ALL umbrella symptoms and so on.
    The best thing for me is: to do "warm-water-exercises" in my not too big hot tub every couple of days. They are obviously modified as I am not standing, but I can do many of the stretches, and a light cardio by bicycling while sitting with my tush on the bottom. Having had a Right Total Knee replacement at 42 [5yrs ago] and not getting much movement, and noting the left knee deteriorating and the tendons in both being shortened....this has been the BEST DAMN MOTHERS' DAY PRESENT A MOM COULD EVER BUY HERSELF!!!
    So Moms' get your family to kick in some $$ and get a nice 48"round, not fancy, hot tub when they go on sale in the spring, then get to work. I bought mine just 2 years ago.
    Don't let anyone turn the water temperature over the 99 degree mark or it becomes unbearable and sickening to do any real work.
    I have been able to start going down stairs like a real person now for about 8 monthes, versus doing them a single step/both feet like a wee toddler. I am also able to get out and walk my dogs more comfortably with my adult kids.
    Best of luck.
  10. elvis321

    elvis321 New Member

    I've just signed into this site and read your note here from last year. Day after my birthday actually! My specialist Dr.Allison Bested [best in Ontario and I truly believe Canada] wrote a great book for us. She had input from a lawyer, and also a wonderful Doc of Naturoapath from the States who came up to her clinic to study "us" and her methods.
    You can get the book on Amazon.com [it has gone into second print]; called: Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia.

    GET YOUR HUBBY AND ALL YOUR FAMILY MEMBERS ON BOARD!!! NOW. You don't want to end up severely ill as I am . Have been on permanent disability now from a health care field a career I worked very hard to accomplish. Started nursing at 19 and ended my career as a Manager for three departments at two hospitals. Extra night school at college for two different degrees, and raising two children on my own after a nasty abusive marriage. [go figure why I got so much worse so fast huh]. Could never say NO to anyone...even my VP as he dumped more responsibility on me. My body finally said NO TO EVERYTHING.

    Even your wee ones can help you. Teach them to fold laundry and carry small piles to certain rooms. Let them help you cook too. The more they learn now, the more they can takeover for you as they get bigger. They can change pillow cases. All kinds of things you may not want to surrender because of some inbred guilt as a Mom....trust me I know it.
    Cook extra when you make meals when you feel ok and freeze for days you feel awful. Frozen vegies and powered potatoes etc are as healthy [read labels] as the real thing. AND no-one will really know if you add a bit of parsley etc to jazz it up. FIND SHORT CUTS and GET NAPS AS MUCH AS POSSIBLE.
    Find a good friend to off load to...you may lose others. Its' not fun honey. Hang in...
    You can always offload to someone like me if you ever find the need.
    Cheers and gentle hugs,
    Brenda
    <br><br>[<i>This Message was Edited on 03/01/2009</i>]
    [This Message was Edited on 03/01/2009]
  11. elvis321

    elvis321 New Member

    Oddly enough your career and mine are very very similar!
    I started nursing at 19yrs and went into Supervising in CSR [or whichever term your used to now]
    sterile supplies, transporting, linen, instrument room etc. for years.
    Managed Admitting and Regtn for many years [Main day surgery and regular admits plus the staff the admitted clients in Emerg].
    Layoffs meant for some damn reason that I ended up with the Telecommunications for two hospitals on top of my already huge portfolio. I had the largest assignment in the two sites outside of the VPs' and as a Manager I sure didn't get their income nor the same or close to that of my Directors' although I made her look good. I'm not conceited - just the truth.
    That meant I had to learn EVERYTHING about the telecommunication industry and mobile industry [pagers, cellphones, multiuseages] overnight. More night school, more conferences and no one to assist me with my own day to day work. Not even a Secretarial function support.
    I was a single Mom and have been raising my two kids alone since I divorced in 1990. Married at 22, first born at 23 and 8 years of mental cruelty and abuse. Wasn't worth the cost of the dress really. LOL.
    Anyhoo....I can totally relate to this note of yours - likely alot more than many others.
    Feel free to send me a note sometime.
    Cheers and gentle hugs,
    Brenda
    [This Message was Edited on 03/01/2009]
  12. spacee

    spacee Member

    I have a fairly nice size tree that stays decorated with a sheet over it in the hall closet.

    I start Christmas shopping in Jan. after Christmas for the next year. as soon as I see something someone might like. We are not big gift givers but just to have a some things under the tree. I hope to be through by Oct.

    Oct I start week by week buying the stuff for one casserole recipie and freezing it. I do have a freezer so by the time Christmas is here, each shelve has the casserole, rolls, desert for one nite's dinner on it.

    I cook the turkey and take off the carcass a week ahead, make the dressing and sweet potatoes and freeze. Even if it is a pie from Perkins, it is in the freezer on the shelve with "its" dinner.

    We use a pretty red table cloth and white chinet oval plates cause no one wants to do the dishes.

    I buy the bags of lettuce and cherry tomotoes and other bagged things for the salad. If it isn' all eaten, it can be bagged for later.

    I order a pork barbeque from Honey baked and buy hamburger buns for bbq sandwhiches for lunch.

    I also order a sub ring without the lettuce and tomato and cut into wedges and freeze for more lunch for Christmas holidays.

    This I do over a three month period. My youngest son is home the longest and he helps with deserts, cleaning and setting the table for the meals.

    On Christmas Day, hubby cooks egg, cheese, sausage casserole, coffee cake (from honey baked), oj and coffee.

    The casseroles I make for the dinners are Chicken Divan and Chicken mozarella. Both can probably be found online.

    We have a Dec 23 birthday so we always have a birthday cake from the store.

    It is the most relaxing time, when the time comes and I can play with my grandbaby.

    I do this again when they come in the summer (no turkey though).

    Linda
  13. faithinlove

    faithinlove New Member

    I sometimes feel like this dd has taken me away because of all the pain and fatigue.
    I begin each day with meditation and just resting my mind not to take on more than my body can handle today. I do chores for about 30 minutes and rest, then do more things that need to get done. I make lists of things I will get done today and mark them off as I go. This makes me feel as if I have accomplished something. I also make a grocery list that is on my fridge and whenever I run out of something it is right there in front of me when I make my trip to the store.
    The way that I know the old me is still there somewhat is when I sing in our Christian band. I have a love for music and it seems to uplift my spirit all of the time as I sing. I also enjoy painting scenery on canvas when I do not hurt too much.
    I enjoy planting flowers and plants outside of my home as well as interior decorating. These things and reading a good novel seems to make some of the stress go away.Definently my pets make me smile too. My cockatiel also takes a bath with me. He loves it. It is really funny. My 3 pound chihuahua loves my bird too. They both follow me around the house like shadows. They truly make me smile.
    You know before I got sick I really did not enjoy the beauty of nature and the things we have around us.I think I just took that for granted. The sunsets.sunrises, the moon at night, the beautiful stars above us. Just to sit outside alone at night and feel the gentle summer breeze blowing through my hair and sit on my patio with a good cup of coffee in the morning or at night. The beauty of a lake and the waves blowing against the shore gives me tranquility. I know this may sound foolish to some people but it makes me want to fight and learn to love what I have now. I have lost the old me but I have found a new part of me during this terrible dd.
    I guess good rest and pacing myself with my chores is the best things I can do for me physically and I am still working on the mental part of this journey I am now on.
    I know one thing I say to myself each day is "I embrace this dd and it does not control me, I control it." This does not work every day but if I can say this it helps me to cope with the huge change in my life.
    Hugs to all and God bless...Faith
  14. AdirondackScarlet

    AdirondackScarlet New Member

    Ginger bath, a good cry, naps and occasionally when it's real bad I roll a fatty and smoke that....Dr recommended.....
  15. lynda.hawk

    lynda.hawk New Member

    I had never heard of fibromyalgia til last week when i was diagnosed. I was in an accident in dec 2001, my legs were nicely smashed up, i never healed and have to walk using crutches. Everyday hurts, everything i do hurts. And i cant remember what sleep felt like. From tues last week til sunday i had an entirity of 40 minutes sleep, does any one have any suggestions, i've run out of ideas.

    Thanks Lynda.
  16. juliemouse

    juliemouse New Member

    So many things. Sometimes lying down for 10 mins and closing my eyes really helps me keep going in the day. Many supplements help: magnesium plus at night,and in the day: liver support herbs, adrenal support,fish oils, undenatured whey, c, d, a,e,b complex helps with sleep. Telling everyone " I don't plan more than 2 hours ahead". How can I? Big: congratulating myself and telling myself I am doing a good job for everything I get done, instead of feeling less than normal people all the time. No comparisons. Yoga sometimes, lying upside down on a balance ball. Hot baths with epsom salts and something to read. Going for walks with friends. Not eating sugar or simple carbs or dairy for 16 years! Crafting and selling it; something to do!!gratitude journal at night. Also at night to sleep I take ativan and 1/4 of a doxylamine succinate pill; an over the counter sleep aid which is really an antihistamine. Just doing one thing at a time, taking things slow. Having a business selling my jewelry and crafts, work from home when I feel well. I always have projects and goals. When I feel well enough to function, I ignore whatever remaining symptoms I have, and do my "normal person immitation" and do life when I can.
  17. juliemouse

    juliemouse New Member

    ativan is much better than xanax for muscle tension, ask yr dr.
  18. mlbbarry

    mlbbarry New Member

    I have a bulldog, that thinks I'm her world. She goes everywhere with me and when I have to lay down for a bit throughout the day, she is always at the side of my bed waiting for me. It's great because she is slow moving and only requires a daily walk, which gets me out there, and the occasional dog park. She is so loved by my family and friends that she is welcome almost anywhere.

    So my advice, get a lazy dog that doesn't require much energy, then dive into loving it so you become it's world. You will always have a companion that doesn't judge your illness.

    Monica
  19. lupelady

    lupelady New Member

    I started taking melatonin a couple of months ago, 1 tablet about 1/2 hr before bed, and sleep great now. I never could sleep before without taking some drug to help me. Melatonin gives me a good night's sleep with no leftover "drugged" feeling in the morning.
  20. scturbett@yahoo.com

    scturbett@yahoo.com New Member

    How was the lyrica when you started it? I was so dizzy I gave up on it in a couple days.

    Carolyn