Please share any lifestyle adaptations that have helped you to manage daily life with your illness.

Collectively, our discoveries and ideas, no matter how small, may ease the way for many others.

I have a senegal parrot and he goes into the very warm bathtub with me. I suggest wearing a shirt while in the water because they have rather sharp claws. He sits in there and says "love you" and he is so cuddly and non-judgemental, this has been a godsend to me. jupitor

Pacing myself when I do my housekeeping tasks. I break each task down into small steps and then take one step at a time working toward completion. Jobs take longer, but at least I get them done. "Inch by inch anything's a cinch."

I still work daily, too long days. But, if I can remember, I have found that a break, only has to be 20 minutes mid-day really, really helps.

Someone mentioned too much protein. I have been drinking a protein shake for breakfast after I read about it helping with hair loss. Could this be making the fibro worse?

I say learn to let the guilt go involving holidays, family obligations, etc.....don't let family guilt you into going to all events...we don't go to anyone;s home for holidays dinners, we eat here by ourselves(the 6 of us) hubby does the cooking.....it is so relaxing and peaceful.....

pick and choose your favorite holiday traditions and let the rest go.....i stopped sending xmas cards one year....another year, i stopped baking, ....this year, i only decorated the tree and put up stockings, no other house decorations.....hubby didn't have time to get the outside lights up and we just let it go.....

you can drive yourself crazy feeling guilty....i try to save all my energy(which is not very much) for doing small tasks for my kids and hubby here at home....my big job is laundry and keeping the house picked up and neat....

oh, and get a weekly housekeeper!!!if you can't afford it, try a teenager, they work for less when they are under 16....even if they just vacuum for you....or sweep...and change the bed sheets...

Eating more frequent meals than 3 large meals. My stomach must not be too full. I suffer from IBS as well. Trying too eat more fruit than usual. Only like 3 portions. Mix my fruit juice with water,because I don't like drinking water just plain. Bought new supplements. Viralguard, Multivitamin and Calcium-Magnesium with VIT D. I use a thingie you put in microwave that looks like a thick scarf. I can hang it around my shoulders or cover my neck with it. Xanax helped me alot with muscle tension.

Walmart, smith's were hard for me until someone said "don't they have electric carts?" And everyone is much nicer too.I also have a cart to wheel things in the house. And I make the trips smaller, less to put away. House keeping help is also a must.

Keeping to a daily routine is essential: getting up at same time every day and going to bed same time. Also as others have mentioned, not feeling guilty about things that you cant do, especially family related. Thats not easy to do sometimes but its better than wearing yourself out.

shaz

and when my kids started talking about Christmas and what I would like to have I asked for their time. Our oldest came up and pruned our roses and did a lot of work in the yard and said he wanted to come back up on his day off next week. My middle son is doing some reroofing, and my youngest will be here in spring to power wash and put up the deck cover. Managing daily life is easier if we finally admit that we could use help!

Yes, I agree with the importance of good sleep. My husband snores and since FM I have had trouble sleeping through it. Anyone else found an answer to this?

I use earplugs.

After dealing with cfs/fm for many years and being bedridden and with high levels of pain many times taking a good look at the depression factor in my illness and being willing to try Cymbalta to see if it works for me. Dee50

a few ideas to make housework easier:

Store household cleaning products in an upper kitchen cupboard rather than the cupboard under the sink.

Keep cleaning products in bathrooms and/or in each room where you use them.

Keep extra plastic bags in the bottom of wastebaskets & garbage pails. This makes it easier to change the bag when the garbage is full.

I love those Mr. Clean reachers! They are made to clean the bathtub/shower but they work wonderfully on floors and walls, as well.

Hang brooms & dustpans (with a special hinge) on the back of all closet doors. This way there's a broom & dustpan easily available no matter what room you're in.

Use the same coloured bedsheets, pillowcases, blankets and quilts. Then, when the bed is unmade, it doesn't look as messy.

Use a long-armed spatula to scrape any dirty & stuck bits off the floor as you mop up.

Swiffer mops are wonderful. If you don't like using disposables, then a cloth works well in place of the disposable wipes.

As you leave a room (even just to go to the washroom) take away any garbage, clutter, dishes etc.

While you're taking a shower, use a bath scrunchie (an extra one used only for this purpose) to wash the tub & shower. You can use a bit of shampoo as a cleaner . This is much easier than trying to clean a dry tub & shower from the outside leaning over.

Put on a thick terry-cloth robe immediately after a bath or shower. This saves on having to launder so many towels as well as reduces the bending & stretching needed to dry off with a towel.

Keep dust clothes in the top drawer of dressers and tables for a quick & easy dusting, as you notice the need.

Store like-products on trays together in the cupboard in order to cut down on the number of times you need to bend & stretch to reach necessary items. For example, if you frequently bake cookies, then store flour, baking soda & powder, vanilla, oatmeal, raisins etc. all on one tray in the cupboard. Or, to more easily make coffee/tea, be sure to store coffee, creamer, sugar, teabags, mugs, teaspoons etc. together.

If you have pets, then use a plastic serving tray on the floor for their food dishes, water bowls etc. Then, when you need to refill their food & waler dishes, you can lift it all up (and put it back down) at one time.

Re-use the same water glass / coffee cup all day.

Use all white dish clothes and dish towels, a fresh one every day, or as needed. Store dirty dish clothes & towels in a plastic bag so they can all be washed together once a week (with a bit bleach, if necessary).

Use three laundry baskets (white, light, dark) and sort dirty clothes right away (when you undress) by putting them in the appropriate baskets. Tie socks together when you put them in the laundry basket.

Replace toothbrushes every six months. Store the old ones in the bathroom and/or kitchen cupboards so they can be easily reached and used to clean around faucets etc.

God bless, Anne Theresa

I have learned to listen to my body, I am ever so aware when I get to tired or just have bad days, instead of always fighting my body to do as I need it to do, I listen and rest and try little bits at a time, or if thats not a option, then I give myself the hall pass of being ground to thy bed!!!!

by Catalog and the Internet saves me a great deal of time and energy.

Hello, My husband used to snore but now he is on the CPAP mask and it is amazing. No more snoring and with the soft engine running on this put me to sleep in no time. I take tramacet for my pain. I dont sleep well every nite but little things I do help me daily.

I hope this information helps you :)

JenJen2005

the Activities of Daily Living, I never thought of putting my pet's dishes on a tray, thanks for that one! I have 4 dishes I constantly have to pick up and clean.

Being in a flare, it would be easy for me just to give in and not do anything, but the 2 kittens I just received as presents and my elderly dog and cat do not allow me to, they want attention as soon as they see me in the bedroom doorway, before the coffee!

They are the biggest obstacle, but I realize a blessing, too, to keep me moving, although it hurts.

I inherited a reacher from my deceased mother, and it helps when I have to retrieve the dog's leash in the morning when I put her out and to pick things up, which is constant.

The first thing the doctor did when I went into a flare was put me on low dose Elavil, which I take 3 hours before sleep, and it worked. I was not sleeping well from the pain.

Lots of good tips here..........

That means no TV, no computer, no music, no books--nothing that could "exercise" my brain. Closing my eyes also helps. Call it "mental rest", if you will. For me, it's as important (if not more so) as physical rest.

My goal is to do something productive for 45 minutes a day if I do that I feel like the day's not wasted.....when I get up in the morning I count the hours until its bedtime, not that I sleep good.

I think that pets are great company when there's only me living at home. My pet cockatiel, Leigha is such fun to have around. She likes to play with little things around the house while I am working at the computer. I caught her laughing last week while i was working and tried to see what she was doing at this time but when I peeked into the room where she was she just looked at me as to say, what's up? Little smarty-pants, I think. She also likes to sit on my shoulder after I have had a bath and preen my hair and cuddle close to my head. I can feel her warmth and that makes me feel pretty good inside on the days that I am struggling with fibro pain.

I sweeped the floors earlier and then had to rest, so I just had a couple of little piles of dirt that I put out of the way. I just took the Dust Buster out and vacuumed the piles up and then ran it over the computer room carpet and around the kitchen garbage can--even got a few swipes on the dog too.

Using the dust buster was a lot easier than getting out the big vacuum cleaner that weighs a ton. :)

My son sent me this hint from Japan. Put a big pan of water on to boil. Put whole potatoes in it with skins on. Boil potatoes until they are as done as you want. Then put them in a bowl of ice with water for 10 seconds or so. Then just grab the peel and it pulls right off.

I can't peel anymore so his hint was much appreciated. This was his first stint at cooking for himself and he was quite proud, as he should be, of this simple tip.

Jinlee.

Good sleep does it for me. I also work full time and need it. Also not overdoing the extras as well, as others have said. Also prayer....

Some great advice below! Keep them coming!!

I like what ilovepink4 had to say lot's of guilt when I'm not up to doing family funtions excpecially when most people don't understand

Bob

Surprisingly, the method your son suggested is used throughout Europe and was used long before the idea of peeling potatoes developed.

In countries such as Germany, Switzerland, Austria etc the Potatoes are always put in to boil in their jackets and once ready, are rinced under cold water, the skin simply falling off in the process.

Most of our potatoes are home grown, so we simply rince them off under the tap and give a bit of a scrub with a scotch brite before plunging them into the boiling water.

The flavour of the potatoe is far superior to those that are peeled - but be sure to choose a good quality spud that doesnt go mushey.

I work a full time job. I have pain everyday. When you dont look sick people think you are fine, I am tired just getting through the day.

mentally i am drained. Just dont know what to do.
[This Message was Edited on 02/19/2008]

For my 3 meals/day and any snacking, I focus on protein now because it is a slower digested and released form of energy that doesn't spike my insulin, the way even natural sweeteners can, and lasts longer throughout the day.

I eat much less "sweet" foods, although I focus on natural sweeteners with my protein meals: sauteed or cooked onions, corn, sweet potatoes, peas, etc. I stopped eating anything with processed sugar - I realize that's hard to do. Even with that, I would still get mid-day fatigue storms, perhaps because I continued to eat fruit liberally.

Then I learned that protein takes longer to digest. So, if I'm going to have any natural sugar (berries in my protein shake, for example), I'll eat some protein 10 minutes before. I might snack on walnuts, or put cashew butter on a protein-rich, sugar-low slice of bread.

I don't eat an entire apple anymore, I eat half of one with some nuts. This also goes for watching the healthy, slightly sugary vegetables - carrots, peas, corn. I ensure I'm having protein with those meals, even if it's a matter of swiping carrots with cashew butter (5g protein to 2g natural sugar) to balance the protein-sugar ratio during snacking.

And, after dinner for dessert, if I want my gluten-free, dairy-free and stevia-based (natural sweetener) cookies, great if following a protein-high meal. If not, I'll have walnuts with them.

I can't say for sure that this is the reason, but it seemed like when I started paying close attention to this, my mid-day, ferocious fatigue went away. I still get tired and a little brain foggy, but not every day. Many of my other debilitating symptoms remain, but at least I'm awake and coherent to witness them - not sure if that's a plus - lol!

Cymbalta, which helped a little with pain, but was miraculous for my depression, and plain old attitude. I try to stay as involved with life as possible. Sometimes I do things I enjoy even when I am knock down drag out tired. I might not think I am enjoying it at the moment, but i'm always glad I did it later, even if I have to laugh at myself for dragging myself through the experience. My garden--even if I have to hire people to do most of the work. My dogs--so affectionate, and always there for me, no matter what.

If you use a small humidifier in your room, it does two things. It moistens the air so he won't snore as much and listening to it running at a steady pace it is soothing-like white noice. It really works for us.

My boyfriend/partner snores, and he snores so loudly, I told him that unless he had a sleep study, I would sleep in a separate room. It turns out he has sleep apnea, which can be a life-threatening condition. Now he uses a C-pap to help him breathe, and he no longer snores at all. Anyone who snores, or whose husband snores--you need to make sure you/he doesn't have sleep apnea. Snorers often have it. Also, fibro/ME sufferers who snore often have sleep apnea. Dr Lapp keeps asking me if I snore.

I SLEEP MUCH BETTER I LOVE THE NOISE IT MAKES SOUNDS LIKE THE OCEAN HE DOESN'T SNORE AND I SLEEP BETTER( WHEN I SLEEP)

This is just an approach I've adopted for my daily life. Each day I choose one room to focus my housekeeping efforts on. This approach has helped me focus my little bit of energy and things don't seem overwhelming. At least every room gets looked at once a week and depending on how I'm feeling they might even get swiped clean! I also do one load of laundry each day.

I thought I had the fibro tricks. Did anybody mention stretching? I try 20 min. a day. works good for me. More smaller breaks than one long break.spread normal cleanig routine over the week. Than all at once. If you got to move snow get it while it is falling, Rather all at once. As you leave a room (even just to go to the washroom) take away any garbage, clutter, dishes etc I wish my wife knew that one Anne. Thanx..

I purchase those Lysol or Clorox wipes when they are on sale and at Costco. I use those things daily in my bathrooms.

Each day I wipe down my bathroom sink - I have a house full of men that shave! - My hubby, 2 boys in college and one that still lives at home in his 20's. So, there are always stray hairs from them.

I just wire down the sink, then dry it quickly - it takes only a minute. I try to wipe the toilet every other day also. This way it cuts down on a huge cleaning time once a week. It keeps the bathroom much cleaner in-between the times I can tackle it to really get in there.

When I do the bathroom "cleaning" I take everything out of the tub/shower - then use a cleaning spray that I can tolerate - spray everything down in the tub area. I swish some toilet cleaner in the toilet, spray some cleaner around there and the bathroom sink - then LEAVE!

I come back in about an hour - I've let the cleaner do it's job - if necessary, I may need to spray a tough spot or two again, but mostly I just need to wipe things down then rinse with the shower & put everything back in the tub (the shampoos, body wash etc.) I really only takes a few minutes to use some paper towels to wipe down the toilet, then swish the cleanser and flush -voila, its clean! I'll sweep; (then mop the floor every other week - or have on of the boys do that for me)Wipe down the sink, since it has been kept up, clean the mirror & it's done. My bathrooms are small - so I'm not sure if that is an asset or hinderance - sometimes cleaning a small space is difficult because you have to be creative where everything is!

Now since I live with 3 not so neat boys in my house - I've grown oh so tired of repeating myself of reminding them of the house "rules" regarding cleaning up after themselves. So, I recently posted lovely little notes around the house.

On the microwave - Please make sure you use a cover for your food. If you make a mess, Please clean it up.

By the back door, I wrote - Remember to check the garbage and recycling - If they are full, Please take them out - it is part of your family responsibility.

I have to say, my boys have been much better about chipping in since I posted these notes! I don't have to "wawawawawawa" anymore!

There are some really great tips on this thread

People always suggest making lists and keeping notes because of brain fog, I've tried this but I often end up not being able to find my lists or notes, or I forget that I made them. I bought a large black board 5' x 6') and had it mounted on the wall in the kitchen. That's where I make my lists and notes, my husband also leaves me messages and reminders on it before he goes to work. Totally reusable and I never lose it! Also, it's hard to forget it because it's the first thing I see when I walk into the kitchen.

I also dry myself with a terrycloth robe, eat protein with any sugars, boil my potatoes in their jackets. I also have learned to move things by scooting them with my feet or pushing against them with my butt. Moving to a one story house has helped tremendously with household management.

One of the most important things that I keep having to re-learn is to ask for help--something I seldom did when I was well. I find my husband and adult children can run a lot of errands for me while they're out and about if I just let them know what I need. I try to remember that every task someone relieves me of allows me to save that energy for something else.


[This Message was Edited on 03/07/2008]

Yep, separate beds, better separate rooms. Forget guilt, the only way to get any worthwhile sleep.

I had to make the difficult decision to stop working. It is the best thing I could have done. I am now able to manage the recurrence of pain a lot better. I just started taking Lyrica and that has seemed to also help.

My immediate family has known for years that something was wrong although they did not understand it. My job required 50-60 and more hours or work per week, therefore they thought it was due to this. I no longer had a life other than work. This went on for 6 years. I would come home from work and go straight to bed. Weekends were the same.

This was not a life. Always in pain and since I usually walked with stiffness in my legs, my staff knew that I was sick.

Hi I also have fm. My husband snored like crazy untill he got tested and does have sleep apnea. He now wears a little machine all night that helps him breathe, he no longer snores. Not too romantic looking but it has saved us from having seperate rooms wich I thought would be sooner or later. We now sleep much better. Tiffanie

I have had to give up many of the activities I used to do due to 20 years of chronic pain. But there are some that I just will not give up. I love working in my flower beds and pulling weeds. It is very therapeutic and peaceful! The main difference as I've been able to do less and less physically is that instead of telling myself I'm going to go out and weed the front flower beds, I tell myself I'm going to go out and weed two or three square feet of the front flower beds.

That way I've set a realistic goal that I can achieve and be proud of instead of feeling like such a loser and a failure when I have to quit after 20 minutes!

All of the suggestions I've read in this thread are all the kinds of tips I'd like to include in a book that I'm working on. Please contact me at fibrobook@yahoo.com if you'd be interested in contributing your story and your lifestyle tips!

I thought I was the only one that felt this way. I don't know what to do, I have great friends but they don't have a clue as to the pain I'm in. I work full time because of the insurance but it is getting almost impossible to coninue. My husband is great but how can I worry him with the fact I don't think I can work much longer. What can I do?

That could've been me writing that. I am so with you. I've always looked healthy no matter what was wrong with me. No one ever believed I was ill--I keep having to remind own husband. But you know you're suffering, so set aside time for yourself and pamper yourself in some special way. Please know you're not alone.

Hi, its Penny. I really thought this thread was very helpful even though most of us know most of it. I liked the one about resting your mind with NO tv, reading, anything at all. This is hard for me, but I have found that mental exercise can wear out my energy just like physical exercise does. I can only add when sitting-smile. Sit and smile. Uses the right muscles in face to promote good feelings.

once I was 65 ,My DR TOLD ME I WOULD GET FROM MEDICARE A SCOOTER ,SURE ENOUGH I GOT ONE -FREE . THAT CHANGED THINGS VERY MUCH . I USE IT AS I NEED IT . GO SHOPPING OR USE INSIDE . I DONTH FEEL I AM ALL LOCKED IN AND CAN DO MORE THINGS ON MY OWN . THE WEAL CHAIR MADE SUCH A DIFFRANCE IN MY LIFE . GOOD LUCK TO YOU THEA

Early on in my illness, I got rid of my heavy pottery dishes and replaced them with corelle. Corelle dishes are very light weight and so much easier to lift in and out of the dishwasher. Also, they don't break if they drop. I know this sounds like a small change but it has made a big difference.

My story, my experience with FM begins as a heart-breaking tale, but it ends on a very positive note. Without reading my background (the beginning of my FM trials and tribulations)- I doubt one would truly appreciate how far I have come. I know that many of you may have similar stories as I have read so many and they moved me so much. I worked in the medical field for 27 years, in hospital business offices~ (supervisory),admitting department ~ (manager), a rehab facility ~ patient rep. My last job was managing 2 clinics at the same time, an extremely busy chiropractic clinic and an outpatient physical therapy clinic. I worked 10 years in that stint. Over the course of many years, I suffered several back injuries, due to falls, lifting and bending the wrong ways, and a couple of auto accidents. I can't really remember, and probably will never know, when my FM originated. Since there were so many incidents, I would almost recover and then boom! another incident. I always attributed my pain and many other health problems to my spinal injuries. I was almost always hurting, especially those last ten years of working. I would travel quite a bit to other clinics to hire, fire, train, etc. As soon as I got home, I was in my nightgown and in bed. My husband would cook something and bring it to me to eat in bed. This went on for a couple of years. I started seeing a psychiatrist for anxiety, major depression, and sleeping problems which I attributed to my stressful career. I also began seeing a counselor at the same time. I am still seeing them, since August of 2003! In Oct. 2005, I became so deeply depressed that I got my gun out and put it to my heart. I wanted out of this world of pain that I saw no end to. I am Christian and this really goes against my beliefs, and I love my family and would never intentionally cause them pain. But at that moment in time, I was not in touch with reality, I was just wanting to put an end to the suffering. I could not continue on in life, or at least that is what I was thinking, not rational at all, I know. I had made my mother aware of my suffering and she had made me promise to call her if/when I ever got desperate. I called her. She called my psychiatrist. She called my husband. My husband came home and took me to the E.R. and I was admitted into the psychiatric unit. I was given medication and put to bed. The next morning, I met with a psychiatrist. I was very tearful and was in so much physical pain that during that meeting ~ I was diagnosed with FMS and MPS by him. I also was diagnosed with PTSD, Major Depression, and an Anxiety Disorder. He told me that had it not been for the suicidal ideation, I would not even be in that ward. He told me the cause of all my depression and anxiety was largely due to physiological problems, and that I was not crazy! He told me it was not all in my head! I was there for 2 weeks. I came out knowing that I had to take care of my health, which had been screaming for attention for a long time! This meant that I had to quit work. I applied for Social Security Disability benefits a few months later and it went through on the first try. There is so much more to my story, but I would have to write a book, probably to get it all told. So for now, I will skip some things: I did attempt suicide again, Jan 2006, and that time I had taken all of my newly filled prescriptions, 5 bottles, I think. I was completely out of it, when EMS came. We lived an hour away from the hospital and the EMS people called for AirLife. I was told later on that when the helicopter arrived, I had no pulse. I don't know what they did, but they obviously got my pulse back. When I arrived at the hospital, I was intubated and put on a ventilator which was doing my breathing for me. Gradually I started breathing a little on my own, about 30%, with the machine doing 70%. I don't know how much time transpired, as I was not conscious during any of this, but eventually I came to. By then, I was breathing about 70% and the machine 30%. Since I had all these tubes up my nose and down my throat into my upper chest, I could not talk. My family members were there and someone gave me a clipboard with paper on it and a pencil. I scrawled a few brief words like "throat hurts", and "take this out" (the tubes), but they said not until you can breathe all on your own. I wrote "I will, just take out" and finally they did. I was there for a few days under constant "suicide watch". Then transferred back to the same psych unit I was in 3 months prior. You see, I had gone from learning I what I had in Oct 2005, quitting my job, and being bedridden for the most part to then having to try to learn how to live with this constant companion, and how to adapt and deal with all of the multitude of issues. I did not want to spend the rest of my life in pain, in bed, on medication, and be dependent on anyone for all of my needs. I did not want to be a burden to my husband or my family. Most of all, I did not want to wake up everyday in pain knowing that there was no cure in sight for what I had. So, just getting a name for what I had, only gave me a temporary sense of relief. Now~ I am happy to be alive. I have made peace with my body and its dis~eases. I am still in counseling. I am still on medications, although they have now been changed to help me more effectively. I am getting assistance from my state's Rehabilitation service to help me prepare for a new job. They are helping with my college tuition, and some of my medication expenses as well. I am attending school online and pursuing a Bachelor of Science degree in Interior Design. I just became eligible for Medicare, after waiting 2 years + 5 months, and have enrolled in an HMO, which will be much more beneficial in meeting my particular needs, than Medicare alone would be cost-wise. One benefit that the HMO offers that I plan to make use of is the free membership to a fitness club nearby. I am going to start with brief times on the treadmill, and the stationery bike. And end each session in the pool and then the hot tub. My husband does all of the housework and cooking and laundry. He knows that I will only be in more pain, if I overdo things, and I am one of those people that can't seem to stop once I get into something. I think once I get in a routine at the gym, I can probably work my way up to being stronger. Then, I will possibly be able to do some light housework. However, since I am attending school online, my husband and I have agreed that I should focus on my health and my school. I am doing well in school, but I was having difficulty with the fibro fog and reading and retaining what I needed to learn. The state Rehab office sent me for a complete evaluation and battery of tests and I have ADD, too! So I am now on Adderall, which I take before I "go to school". It is helping me greatly. Ultimately, my goal is to finish school, get my degree and go back to work. In the meantime, I will be: * working on improving my physical health and getting stronger * staying on a regular schedule * continuing my counseling sessions * nurturing my husband and our marriage * reaching out to my family and being there for them * taking my medications as directed * staying current on the latest news about FMS/MPS * trying to get as much restorative sleep as possible * eating healthier and watching my weight * taking time to relax and practicing guided imagery * studying and working hard to earn my degree * making new friends and nurturing my friendships * Waking up everyday and thanking God that I am alive and that my life is precious and meaningful and I know He will give me the strength I need, one day at a time!

You have taken the first step by reaching out here! You are in good company. We all are experiencing so much on so many levels. We all have gone through various stages. If you can no longer work, you need to know that "that's okay". It really is time, perhaps, for you to sit down with your husband and let him know what is going on with you and your health. When I had to quit, I thought the world would end. That was almost 3 years ago, and the world is still spinning. I am attending school online and working toward improving my health and stamina and starting a new career in a few years down the road. I am being good to myself, instead of trying to take care of everyone and everything else around me. Surely, your husband must see that you are hurting. How can you have hidden that from him, or anyone else, for that matter? You may also think about calling a family meeting, if you have kids, (I don't know your age or if you have children, their ages) but your close family members should be invited to attend. I want to recommend a book, that you can probably get at the library or online at Amazon.com or another place online you may know about. It was written by a woman, Devin J. Starlanyl, M.D.~ and is entitled: "THE FIBROMYALGIA ADVOCATE: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome". The ISBN is 1-57224-121-7 so you can order it through your local library or interlibrary loan system. This is, by far, the most comprehensive book that I have read since my quest for information began in Nov 2005! And I have read many! What I really love about this book is that she has actually written some wonderful guidelines on how to tell your husband, your children, and your other family members, what you are having to deal with and how your daily life is being affected. You will find that in Chapter 14. This book will give you so much helpful information. It covers everything you should know and I refer to it often. I hope you will check it out or buy it. Once I read the library's copy, I knew I needed to keep it on hand, so I bought one online. Good Luck and God bless! And remember you are not alone and you need not suffer in silence. Help is available, but you must ask for it and seek it out. Make this your mission in life. Because it truly is just that!
[This Message was Edited on 04/02/2008] P.S.I don't like that icon, but can't delete it! I hit the wrong button apparently! Sorry!!!
[This Message was Edited on 04/02/2008]

Yes Yes Yes, I love my husband very much and we have a good time, if you know what I mean. We have not slept in the same bed or room for years. It apalls people when they find out, especially my mother. But, I need my sleep and he snores and gets up earlier than I do. On a recent trip we had two beds in one room- No one says a married couple need to be in the same room-plus I have a great French themed room he would hate to sleep in---------Good Luck

I stopped working in late June of last year. I didn't want to stop, but I was having trouble getting my work done, and my boss was less understanding with each absence. I was on intermittent FMLA, but my boss said he needed someone who was reliable. The stress was getting to me in a big way.

The fatigue was overwhelming - I slept from Friday night until late Saturday - about 24 hours straight. The last straw was that I starting to get drowsy while driving and I had a few close calls.

About a month after I stopped working, the pain stopped completely, and it lasted for about five months. The fatigue never went away, but since I didn't have to work or worry about getting up to go to work, I slept as much as my body needed to. I came down with bronchitis around the holidays, and the pain reappeared, but it's not as bad as it used to be.

A lady from the church comes in for a couple of hours every two weeks to do major cleaning, and I keep things as uncluttered as I can. The lady who helps me clean doesn't charge much, and her help is invaluable.

Because I'm not working and I'm on disability, my income has gone down substantially. I'm in the process of selling my home, and when that's done, the equity should be enough to purchase some land and a mobile home.

I won't have a house note, and my disability income will be used to pay utilities, food, etc. and hopefully, I can start saving again. I'll miss my house, but if it comes down to my health or my house, I choose my health.

nina

I sing when things are too much....I am a Dave Matthews Band lover and I just sit and sing at my desk or with my mp3 player on.. If you can download or buy some cd's from songs when you were younger for some of you older ones like the 50's and 60's or 70's and 80's and so fourth and play or sing music that reminds you of when you were younger and livlier can sometimes lift you up..if you can't live like you lived back then maybe you could still feel it in your heart..Like I was younger in the 80's and I love 80's music so so so much..But yeap I sing my heart out and it helps me cope with sadness and pain of my body..

I love the thought of your birdie taking a bath with you. My cat LOVES water and sometimes when I'm soaking in the tub she'll lay on my chest (w/ a towel, sharp claws) and just cuddle her head under my chin and purr. I still hurt and she's heavy, but it's soooo peaceful!

Wondering about acceptance of condition? I have a hard time believing I would have FM, esp after the other med conditions I have had. Am down to 2 days work/wk, terrible financial trouble, and my dear husband "wishes" I could work more (I'm a nurse - painful to lose my income). We keep waiting for me to get better - some days I am and some days I am not. Seem to run like crazy on "good" days, b/c sometimes there is so much to do, and I just want to see someplace besides work, home, and church. I want to feel "normal" again. I know I'm normal - but normal as in going where I want, when I want...

Before this, I injured my hip and have been on pain meds for almost 3 yrs b/c it has never healed, and now these symptoms started 2 yrs ago, and rec'd diagnosis of FM from rheumatologist 1 yr ago. Still grappling although as a nurse I've researched and also have read a lot from others w/FM and it could be me writing... Guess I don't know if accepting it is "giving in" and "fighting" would be better, and how do you get people to understand that even if you look okay (dark circles gone since I started B12), it's not necessarily something that will "go away"? I know there's another thread for SSI/SSD, but if any of you are on it, and still work, how do you decide when/if you should apply - how do you decide on an emotional level - not a determination level (do I meet criteria?)? What does it feel like if you apply and are approved? Good b/c you have better financial situation, or bad b/c you've been approved as not able to work? So many questions... I know... Am just coming through a very hard time and am getting some help from a new HCP, but I struggle w/decisions like - should I take a sub nurse position that's open for tomorrow b/c I know it will pay a bill? Or do I say no b/c I have a day scheduled already for Friday, and it is an extra day? Cannot ever seem to pay all bills b/c my income is probably 1/4 of what it was before all of this, and we struggle just to keep our house...

Don't want to be a downer; forgive me if I am. I see so much wisdom and acceptance as I read through here that I just have all of these questions come to my mind, and today is a "good" day, yet the decisions to be made are SO hard... I am married, as mentioned, and have a 6 year old daughter who is MAMA'S GIRL... I want SO MUCH to be the athletic outdoor person I was before she was born b/c all she sees of me is the person who is in pain and is tired...

Thought I had broken my collarbone a couple days ago b/c my shoulder started hurting, but then my daughter got sick. Stayed home w/her b/c I can't take us both to the doc, and although my collarbone is still swollen, I no longer am having the same pain or signs of a broken bone. So confusing?? Do you wait on symptoms like these or is this part of it? I don't remember something like this being a symptom of FMS or CFIDS...

My apologies again if this is too off-base of this thread... I hope it hits the target enough that it doesn't seem totally obtuse and again, I don't mean to be a downer! So if you feel down after reading this, SMILE REALLY REALLY BIG FOR 10 SECONDS, AT LEAST!!!!!! If that doesn't work, take your forefingers and make yourself smile by pulling your mouth into the shape of a smile, THEN you'll be laughing!! :)

Thanks and love and strength to you all! Brenda

Hi Brenda, If you go back up a few posts, you will read my rather long story. Here is my take on your situation and I will try to answer as many of your questions as I can remember;)

I am not positive but I think my FMS/MPS began in late 1992. I worked until Nov. 2005. It damn near killed me, and that is not a joke! Looking back, I have come to realize that I should have applied for disability much earlier on. Had I done so, I might possibly have saved myself from doing more harm to my health.

I did not have the luxury of quitting since I was a single parent, and then later got remarried, to an alcoholic. I was the main breadwinner and his drinking worried me more than my own pain. My good hard-earned credit went down the drain in less than a year after getting married. But I digress... Nothing is more important than your health and well-being. You must know, as a nurse, that you can't really properly take care of anyone else, if you, yourself, are in pain. You also can't be as much of a mother, wife, etc., if you do not take care of YOU first! This leads me to your question about acceptance. We all will arrive at that point in our own way and in our own time. Even when I knew my life was changed, and that I was always going to have these problems and had to adapt to them somehow, I admit I fought the very idea of it!! What did I gain from hitting my head constantly into a brick wall, trying to tell myself that I don't have this, I am going to pretend it does not exist, it is not real?? NOTHING! I was almost in complete denial, because I was determined I was not going to let Fibromyalgia or anything else have my life!

Not very realistic, right? The sooner you can get some counseling about the changes that are going on right now in your life and all of your many, many worries, the sooner you will reach a place of acceptance. Accepting what you have does not mean giving up, nor giving in. It means you can start to deal with it and find ways to cope with all that comes with it. You can then decide about whether you should continue to try to work part-time, or wait until your body screams it out to you in severe pain!! To prepare yourself for making some of these adjustments and decisions, I would recommend: First, one-on-one counseling for some time in order to get a grasp on your entirely new outlook on life. A counselor can help you with so much needed support. I have actually been in counseling with the the same woman since 2003 and still continue to see her.

Obviously, you will need to become your own advocate and build your own support system and healthcare team. Consult with a physician that understands what you are up against. Keep searching until you find the right one for you. You may be in need of physical and/or occupational therapy. I have problems where I feel my collarbone is broken, but its not- its just really swollen and painful. My neck, my right shoulder, and my whole spine are painful most of the time. Also my hips hurt. I tend to fall a lot. My husband, now sober, is doing all of the cooking and cleaning, laundry, shopping, errands, etc. He even helps me in and out of the tub when he makes bubble baths for me. And since I can't brush my own hair, he does that, too! I think that once you have enough medical documentation, you should gather it all together, and make an appointment for an attorney that specializes in disability claims. I did just that and my claim went through on the first try. I now am entitled to Medicare and switched it over to AARP Medicare Complete, which is an HMO plan. It covers all of my needs at a much less out of pocket for my needs. The biggest hurdle I have to say that I faced in all of this is the acceptance part. It is hard to admit to oneself that maybe now not all of my dreams are going to come true. But this I can say: maybe some of them can and will, if I take good care of myself and focus on the most important things in my life, my family, my loved ones, my friends, my pet(s), maybe a hobby that is not too taxing physically. I went back to school. I am going for my B.S. of Interior Design. I want to learn it all. I plan on going to the gym and walking the treadmill, or riding the stationary bike, on my stronger days, or just getting in the heated pool or jacuzzi on my not so good days. Just a few minutes a day,of light stretching can help. Make a list of 50 things, that you would like to spend time doing. You might not be able to play outside with your daughter, but you can color with her, or play with dolls, play with make up, do little puzzles together. Focus on all of the many little things you can do, instead of the things you can't do. Even some things you think you can't do, you may find, on a good day, you can do it, but for only a short period of time. The point is this is how you learn to live with it and keep your life focussed more on what you what to spend your good time doing. I hope this has given you a place to start. And just remember: It ain't over 'til the fat lady sings! (And that only happens in the movies!) Ha! Did I get a smile out of you??? Did I? ;) Take care and warm hugs...HopeUDance

How cute that your cat gets in the tub with you! I wonder if my little chihuahua will do that? He can't stand it when I am in the tub. So my husband has to put the lid down on the toilet and let him set in his lap so he can still see his mommy! Isn't that funny?! Thanks for sharing that little story, how precious! P.S. My hubby often calls me "Cleo" because I can be a little persnickety or "bossy". (like Cleopatra..)!

It helped me to read about your problems while still working - thanks! I work full-time and am just getting ready to start a new job and hoping that I can pull it off. Only have to work two more years and then I can retire but it is a challenge. I have been struggling with not feeling well for about the last year and a half - can't get diagnosed but no question in my mind what is wrong with me. Between the tips I have learned here and a good supplement regime from a naturopathic doc who is also an accupuncturist ... I manage to maintain. It is just nice to know there are others out there struggling ...

Buy a Roomba...they're fantastic. Just let them go and they sweep for you. One of the best inventions made other than the washer/dryer and dishwasher to do household chores. I found one pretty inexpensive at BigLots.
[This Message was Edited on 04/19/2008]

my husband snores really loud. I found some really good earplugs that don't hurt my ears. They are called pretty in pink. They are bright pink and foamy. Very comfortable I got them at Walmart. I even sleep through the dog's whining so my husband has to get up and let them out.

I am reading all the things that help people and they all make me confused. I am sensitive to vitamins, herbs and minerals so i can't take them. They make my sleep 100 percent worse. My life is like a train wreck when i try new products because my sleep is even worse as i try to get on new things and usually i just have to give up because i feel so horrible and nothing seems to make it better. If i take something (drugs like xanax)for sleep it only works for 3 to 4 hours then i feel horrible afterward partly because it's not enough sleep and i can't take it two times in one night. Also i am so tired and a pool would be so cold for me, because i am cold all the time, or hot but not if it is cold out or if i am in a pool. The thought of getting into a pool is painful even a 'warm' one because 'warm' for others is cold for me. I don't know how you can get the energy to do all the things that you say help. I can barely focus on all the information here. Also i am much more sensitive to pain than others, especially when i get the flu or a cold or the worst is a sinus infection. I completely unable to function when i get these illnesses. Another things that happens is that when i take drugs that are supposed to help i get the shocks in my body. I am afraid to take anything at all. Does anyone have problems similar to these? Thank you.

I have been dealing with this terrible pain for at least 10 years and was finally diagnosed with fm. It is so hard because people really don't understand, that simple things are near to impossible for me to do. I have migranes everyday and hurt so bad from head to toe. Trying to cope with kids and husband, housework, it is overwhelming and I stay irritable. I am glad to see so many of your notes. This is real and not just in my head.

Thanks so much Tammy

I totally understand. I just posted, but i could just go on and on. Bright lights are awful, i have changed the light bulbs in the house to small amber lights. Loud noises, Most days it takes everything I have to get out of bed. There have been times my husband has had to help me turn over in the night, because i hurt so bad and can't turn by myself. I have got to where it wear slip on shoes because i can't bend to put on "real" shoes. I also have a scooter, due to not being able to walk far at all.

This thread is way too long for me to read, so forgive me if this has already been suggested.

Since I can never remember even 1/4 of the info and directions my dr has given me at the time of the visit, I bought a digital voice recorder to take with me on my visits. This is going to be a HUGE help for me, I know.

Also, since doing a whole load of laundry is like doing a marathon, I take a change of clothes which has only been worn once or twice into the shower with me. I will mist them down with the shower head and then after my shower, I toss them into the dryer with a dryer sheet. Of course this only works if the clothes are not soiled. The jeans are freshened up and look like fresh washed.

I ask someone in my family for help when I need it. Why should I clean my bathtub and pay back for it the next day when someone else can do it in 5 mintues?

If I go somewhere I have the person driving drop me off at the front so I don't wast energy walking.

I ask someone in my family for help when I need it. Why should I clean my bathtub and pay back for it the next day when someone else can do it in 5 mintues.

If I go somewhere I have the person driving drop me off at the front so I don't wast energy walking.

This is for those who use a cane or walker, or are thinking about it, because of weak or tired legs or poor balance. Leg fog, I call it. I was only 27 when I started having trouble walking, especially long distances, and I was too embarrassed at first to use anything. After a few weeks I gave in and got a cane. After using the cane for a few days, I got a second cane. I needed to ues 2 since both legs were weak and it's hard to support both legs with one cane. I used two canes for several months, but I wanted something that would give me a little more support. The canes were fine around the house or going into a store, but weren't enough that I could go to the mall, for instance. Plus-I know this sounds stupid- I'm a shoes gal and I wanted to be able to wear heels. No, not 4" spikes, just a nice 2" pump. Vanity, I guess! I tried one of those rolling walkers and I hated it. They are so clumsy. They do give more support than the canes and I could go to the mall, but try opening doors in a walker. Steps are nearly impossible and it's very difficult to use a walker on grass or anything else besides a floor or smooth pavement. If you're with a group of friends at a restaurant, do you realize what a pain in the you know what it is to try to get around in a small space in a walker. Then when you sit down at your table, where exactly do you put the stupid thing so that people don't trip over it.

The answer came from a girlfrieng with MS who had an extra pair of forearm canes she let me try. They were perfect. I still use the regular canes sometimes for short distances, but the walker has been donated to Goodwill, and good riddance. I can walk anywhere in almost any shoes and it's not hard on the arms. Many people think they can't use crutches because of wrist or shoulder problems, but if you can't put any weight on a crutch, then you can't put any weight on a cane or a walker either. It's no different in that way. The difference is that the forearm cane (or crutch) is much more stable than a regular cane because of the forearm cuff. They don't wobble like a cane will if you put any weight on it. The trick to using forearm canes for tired legs or poor balance is to use them just like you would use 2 regular canes. Right foot, left cane, then left foot and right cane etc. As the day wears on and my legs get more tired, I can gradually put more weight on the canes as needed.

It really is much, much easier to walk with these canes. They are lightweight and easy to use on steps or going through doors. They also come in many colors which is pretty cool. At the store, I use the shopping cart for support and the canes stay attached to my arms and are ready to use when I step away from the cart. It's very handy.

I would stress that this only applies to these using a walking aid or thinking about it because of weak or tired legs or poor balance or all three. If your main problem walking is leg pain, then there probably isn't a walking aid that will help much, in which case a scooter or wheel chair might be more helpful. But if, like me, your main problem is leg weakness, then the forearm canes are the best choice by far.

Some might think it's too embarrassing to use these canes. I sympathize since I was only 27 and previously very active. But I was already using 2 regular canes for several months when I got the forearm kind, so it was a pretty easy change to make, emotionally. I really felt like people were staring at me more when I used the walker. I think now, most people just assume I have MS or something like that.

Hope this helps

Jackie






[This Message was Edited on 05/17/2008]

I recently purchased an industrial dust pan. It looks like a regular dust-pan but it has a long handle similar to a broom handle. Now, after I sweep, I don't have to bend to gather the dirt & dust from the floor into the dust pan. It's a small thing but a great help! God bless, Theresa

I'm new to this, but I have already developed some firm beliefs. Number one, I MUST do pain management or I will waste alot of time in alot of pain. I came to this conclusion one morning when I was resisting taking anything for pain and it was 12 noon (FIVE HOURS LATER!) before I finally gave up the fight. I was full of anxiety and exhausted from fighting it. I tried the fibro stretching video I bought, I tried lying down, I tried distraction...forget it. From now on, I will not be ashamed to take something for pain. For me, 50 mg of Tramadol 1x day is working.

And I also won't hesitate to take a muscle relaxer for sleep instead of lying there twitching and spasming like an idiot and "toughing it out". I lose sleep and get anxious...what's the point of waiting? (For that, I take 10mg Flexeril)

Another firm belief: I have to keep moving no matter how hard it is. I WILL do cardio 3 x week for 30 minutes and I WILL stretch consistently. A short muscle atrophies and spasms....stretching is good for you. I'll cry through it if I must, but I will continue to do it.

My last firm belief so far: I have to eat right. I have lived for 45 years eating whatever I want but it's time to stop. I know that whatever illness comes my way, I am better prepared to handle it if I am eating a good diet, weighing a good weight and getting regular cardio exercise and keeping my muscles stretched. I no longer eat sugar or wheat products.

I'm sure I will come to alot more conclusions (or firm beliefs) as time progresses but at least these habits are causing me to feel as if I have some control. I am not a victim and this illness will not claim my life. AND it is NOT in my head (how I wish it was)!!!
[This Message was Edited on 06/23/2008]

Just back from taking daughter #2 to college orientation so have not been here recently. To say I'm exhausted is to put it mildly.

Here's some things I find helpful. Probably they have been mentioned already.

Do laundry daily, before it builds up.

One big wall calendar in my kitchen, with everyone's stuff posted on it, instead of lot of little sticky notes (for the "brain fog").

Only have white socks. Eliminates useless pairing. They all match.

Keep to a schedule. I get up early even on weekends when I don't work. (I work about 30 hours a week right now). If I'm tired and I'm home I take a nap.

I also use the tray idea for my dogs' dishes.

Keep things at "point of first use" - suggested in the book "Confessions of an Organized Homemaker" by Denise Schofield (she has some great tips). Keep things close to where you use them, for example I keep my meds in the kitchen and not in bathroom cabinet like most folks.

Keep cleaning products under every sink.

Sort the mail over the waste basket. Pitch the junk immediately.

Shop online.

I let go of the guilt about family obligations long ago. I have Crohn's in addition to FM. I do what I can do and let the rest go.

((((Hugs)))) Michelle

It's been hard for me to make daily changes in my life but I have to listen to my body. I'm newly diagnosed so I'm still trying to understand everything. I've already found that just doing one room a day or maybe 2 small things a day that is if I feel up to it. I also take breaks between each activity and sit down and let my body rest or lay on the couch if I'm really tired. Some days I don't get much done but I try to do a little something so I feel productive. I'm still trying to help my family understand what I'm dealing with since we don't look sick they tend to forget that we are and I can't be super mom anymore and I need my family to understand that so that I have one less stress to deal with.

I was just wondering what kind of bed is reccomended or what kind of bed anyone has found to be useful.

I hope I am not duplicating it , but trigger point therapy works , sometimes.

Here is a link to trigger points and referral pain , along with some other tips and resources :

http://www.triggerpoints.net/

This is a great resource . When you can't figure out why something hurts 'here' you can find the source 'there' . In other words the source of the pain may be a trigger point , which is in a different place than the place the pain is.

Check it out ! It has helped me .

Holly

I have talked to many people including pro's about lack of sleep and also the fact that my sweetie hubby SNORES....even my doc's wife sleeps in the other bedroom( according to my physician) as he too snores. I do go into the other bedroom(sometimes with guilt) but my husband has learned not to take it personally.

I know how you feel. People always say that to me also. I sleep with an electric blanket on my bed. I turn on my side and snuggle up. We have central air so it is usually cold in the house. The heat seems to help me sleep along with the elavil that I take at bedtime.

i did the same thing. I worked for as long as I could. I had a few friends that understood when I finally told them. Of course there will always be someone that doubts you and your pain. Just don't let he stress you out because that makes things worse. The ones that aact like that where never your true friends. I have one friend and her husband that helps us out. She helps me clean the house and her husband helps mine with you yard tuff that I can't do. I do alot of praying and worshipping the lord. Thing could always be worse.

Some things that have helped me:

- Using a cushion behind the middle of my back when I'm sitting in a chair. It props me up so my muscles don't have to work as hard to stay upright, so they're less likely to go into spasm. This works well when you need to sit up but are feeling especially tired.

- Doing the yoga pose called 'Legs up the Wall' once or twice a day. You lie on the floor with your legs going straight up the wall. It helps blood go to your brain and organs, and is deeply relaxing. I also find it rejuvenating. I put a night-mask or eye pillow over my eyes, and sometimes even fall asleep for a few minutes.

- Keeping warm saves my energy and makes me more comfortable and happier. In winter I wear silk long underwear, which isn't bulky but makes a big difference in comfort.

- Circulation socks for diabetics can help improve circulation and warm up cold feet.

- I take ear plugs with my in my purse wherever I go. One pair is cut in half so it only blocks some of the noise. It really helps my nerves when I'm in a noisy environment to be able to insert one or two earplugs and enjoy the peace...

- Most mornings I inhale some warm saline water to cleanse my sinuses. It helps decrease my allergy reactions and cleans out the mucous and bacteria so I'm less likely to get sinus infections, and it's soothing to the sinuses. Use about 1/4 teaspoon salt to 1/2 cup of warm (not too hot or cold) water. You can snuff it from the palm of your hand or the edge of the cup and keep inhaling till it's starting to come into your mouth, but spit it out rather than swallowing it. (Don't force it if your sinuses are blocked, though.)

- If my sinuses are blocked at night I use plain saline nose drops (you can buy them at the pharmacy) rather than decongestant nose drops, which are addictive. Saline nose drops moisten dry, swollen sinus tissues so they can still work.

- Palming eyes is deeply relaxing for the whole body, and very beneficial for the eyes, especially if you can do it for at least 15 or 20 minutes. Cup the palms over the eyes, resting the heels of the hands on the bones under the eyes. Try to block out all the light, and imagine you're looking at black velvet or black fur. It's easiest to do it either sitting at a desk or table with your elbows propped on the table and face resting on hands, or lying in bed on your side with the upper arm resting on a pillow or body pillow beside you. (I think it helps me to really relax and go to sleep...)

All the best to you all! Sunspot
[This Message was Edited on 08/25/2008]

- I'm single, and when I'm having a bad few days the dishes can pile up (I don't have a dishwasher). What helps is not to wait until I have the energy to wash them all at once, but just to do as many as I can. Often I'll just fill one pot or bowl with soapy water, then wash and rinse a few things and set them in the dish drainer to dry.

- I use a radial appliance several times a week. It costs about $250, but should last for years. I lie down while using it, for at least half an hour, but usually an hour or more. Sometimes I get that drifty feeling while I'm using it that you often get during an acupuncture session. I find I rest more deeply than if I was just lying down, and feel more refreshed after using it. I also feel happier (although they say you shouldn't use it if you're angry or feeling negative, so I make an effort to think positive thoughts or listen to something spiritual while I'm using it.) It's something that's been around since the early 1900s, that Edgar Cayce said would benefit anyone.

- homeopathy has helped give me more energy at times.

- acupuncture and Chinese herbs have helped.

- I have an epsom salts bath once or twice a week, with one or two cups of epsom salts. (I try to buy a really big bag of epsom salts at a feed store, as it's much cheaper than the little bags from the drugstore.)

- I drink 6 to 8 cups of clear water a day, and herbal teas.

- I eat fruits, vegetables and whole grains, mostly organic, and I avoid processed foods and snack foods like cookies and chips.

- I avoid perfume and perfumed products, which are quite toxic (unless the fragrance is from essential oils).

- I try for at least a very short walk each day, gradually increasing the length over time. If I have a relapse and don't walk for awhile, I start at the beginning again. I don't want to become more deconditioned than I already am.

- For that reason, I also try to do some strength-building exercises. I try to do a few push-ups one day, a few sit-ups the next. The following day I do a few slow stand-ups from sitting on the edge of a chair (good for leg muscles). Then start over again. My goal is to eventually be strong enough to go to a gym twice a week for a light workout. I do keep falling off, but as long as I keep re-starting again I figure I'm heading in the right direction!


[This Message was Edited on 08/25/2008]

- I've been doing a light sesame oil massage called abhyanga, an Ayurvedic technique, and I think it is helping the quality of my sleep. You can read all about how to do it in Perfect Health by Deepak Chopra. I do it about every other day. It's supposed to calm the nervous system and improve sleep. For me it took a few days before I noticed a difference.

- I like to lie on my back for awhile when I first go to bed, or if I'm lying down for a nap. For that I have my head on a buckwheat-filled pillow, which I can shape to give my head and neck the right support. I find my neck relaxes more with a buckwheat pillow than an ordinary squishy pillow. I also have a small towel rolled up underneath my waist, and a pillow under my knees. This really helps my back and neck relax.

- To sleep I have a body pillow beside me to rest my top knee and arm on. It helps prevent waking up with painful joints. I have a normal pillow on the other side for the same reason. I can lean back on the body pillow from my side and be quite supported, or sometimes if I can't sleep I like to lie on my front. Then I put the body pillow under half of my body so I'm lifted up a bit and it's easier on my neck to lie there (no pillow under my head then).

- I met a couple who had both had ME/CFS. They said the single thing that helped them the most (and they were both doing well) was to start going to bed by 10 p.m. Apparently it's really true that the hours before midnight are worth two after! I'm a night owl and always have been, but I'm methodically trying to work my way to earlier bedtimes. Once when my circadian rhythm really got out of whack (I was going to bed around 4 a.m.)I deliberately went to bed later and later until I was getting up in the early morning and going to bed early at night. I really liked it. But it just takes one or two sleepless nights and I'm out of whack again, so now I think a slow and steady change will help me reset my internal clock if that's possible...

- I start the day by drinking at least two cups of hot water. If I'm constipated I just keep drinking them until something happens, but it usually doesn't take more than three.

- See a naturopath that does muscle testing or vega testing. The first time I went to see mine I brought the 3 bags of supplements I was taking. She muscle-tested me for each of them and told me half of them were not good for me, based on the testing (apparently I was reacting to something in them). I stopped taking them and my digestion immediately improved. I think I was buying supplements because they seemed like a good idea, or because I was afraid I might miss out on some benefit if I wasn't taking them...It was an eye-opener to see that they could actually harm my digestion, as well as being a big waste of money.

- I take digestive enzymes. This can make a big difference. Also drinking ginger tea before a meal can stimulate better digestion.

- I had an acupuncture session and was prescribed some Chinese herbs. She said I had spleen deficiency and discouraged me from eating raw foods, even fruits. (This made sense to me as sometimes they would pass through me within a few hours looking completely undigested.) The herbal pills are really helping my digestion and I'm feeling a bit more energetic as well.

- Homeopathy has been very helpful for healing longstanding emotions or for habitual attitudes.

- EFT (Emotional Freedom Technique) is AMAZING for dealing with emotions, and also many physical problems. Some people even claim they've cured their FM or CFS with daily use of EFT. It's a tapping technique based on energy meridians, and it's easy to learn. You can learn it for free at emofree.com, and there are also lots of archived case histories of using it successfully for weight loss, pain, allergies, etc. All kinds of things. I find it extremely helpful when my feelings get trampled and I'm very hurt or angry or depressed, etc. I've also been able to tap away some of my fatigue. Try it! (If it doesn't work on the first thing you try, don't give up -- try some other things.)

- Jin Shin Jyutsu is an energy healing technique similar to acupressure. The following are finger-holds that can help ease difficult emotions very quickly. This information is from a great book called The Touch of Healing by Alice Burmeister. She says to think of the holding hand or fingers as ‘jumper cables’ which will channel the universal life energy to where it’s needed. There’s no need for strength or massage or rubbing, just hold the finger with normal pressure, either with just the thumb and index finger of the other hand, or by wrapping all the fingers around it. Apply the hold for a few minutes, or until you can feel an even, rhythmic pulsation. These finger-holds can help when you’re feeling difficult emotions. It helps with the emotions fairly quickly, but the finger-holds can also be used over time to help with other health problems. The author says daily application over time will achieve results. But even if you just use it for the emotions, they can be a real help. Hold the finger with either with just the thumb and index finger of the other hand, or by wrapping all the fingers around it (that's what I usually do). Apply the hold for a few minutes, or until you can feel an even, rhythmic pulsation. You can do it for awhile while you're watching TV or when you go to bed at night. The thumb and the middle finger are both mentioned for insomnia, so you might want to try them when you wake up at night. The index finger calms the adrenals, which can also play a role in insomnia. - Hold the thumb for worry or obsessive thoughts. The thumb can also help with the digestive system, insomnia, breathing, colds and flus (so does the ring finger) and the immune system (so does the ring finger). - Hold the index finger for fear. It’s also helpful for depression (also hold the middle finger), back pain, bladder problems, circulation (also hold the ring finger), the brain, and fatigue. - Hold the middle finger for anger and frustration. It’s also helpful for depression (along with the index finger), arthritis (along with the ring finger), sinuses, insomnia, the reproductive system, the knees, and the nervous system. - Hold the ring finger for grief. It’s also good for hiccups, asthma, the thyroid, circulation (along with the index finger), the immune system and colds and flus (along with the thumb), the lungs, large intestine, bronchitis, and arthritis (along with the middle finger). - Hold the little finger for self-esteem. It’s also good for anxiety, the heart, and the small intestine; and for helping to stop ‘trying’ and just be; letting go of pretense. - Holding the palm is considered the ‘total harmonizer’, which harmonizes body, mind and spirit with each other and with the universe. It nourishes all of the organs, supports the diaphragm and umbilicus and provides vitality to the entire being. You can press both palms together, or put the thumb of one hand on the palm of the other, and the index finger or several fingers on the back of the hand. There’s also an acupressure point in the middle between the upper lip and the bottom of the nose that can calm someone who is feeling panicky. (I do this while I’m waiting for the dentist!)

My tip is using the crock-pot for daily cooking. Just throw the food in on low and easy clean up.

Another thing that could help is a air purifier. I hated it the first couple nites. Now I can not sleep without one running. Plus there is the cleaner air. White noise is a good aid for anyone that has problems sleeping however. One tip when useing one. DO NOT sit it close to a wall that is not washable. You will be surpised how dirty the wall will get in a short time.

I sleep with a fan year round. And if I sleep on the couch, I use the ceiling fan ( quiter than reg.fan.) I also stay up late freqyuently to get some alone "me" time. It does leave me tired, but "me" time is worth it.

Jenn

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.

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!!

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!

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

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!

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.

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]

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!!!

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.

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]

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]

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

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

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

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.

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.

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

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

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.

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

Carolyn

I have always suffered from a cluttered messy house. No matter how hard I tried I couldn't keep up. I could never understand how "normal" women did it and for me and my FMS it seemed impossible. I discovered flylady a few years ago and man has it ever helped me. She had given me a plan I can actually follow on most days. A routine and it is all about "baby" steps with her plan. She sends me emails and text reminders of the things I need to do each day. It helps me remember what I need to do an keeps me from overdoing. I also get emails with fun and happy testimonials that inspire me and make me laugh. If you go to her website flylady.net and check it out I am sure you will love her as much as I do. It is free to join and you are never obligated or even bugged to buy anything although I have bought several of her "cleaning" helpers. The rubba scrubba is a great tool that helps me do things my sometimes weak hand just couldn't do otherwise.
I just want to thank you all for sharing and being here. This is my first post and since I been in a recent flare I need the extra support and understanding only fellow fibromites can give.
lots of love,
Sharon

Pray

I buy one every year. It is about 5" x 11"I get the Daily/Monthly Planner...it is $18.95 plus S& H and it is worth every penny! I have been using these for about 5 years now. I started because I would forget if I had taken my Medicine or not...so I write down the time and what meds i took every time! I can take this to my doc appointments and have a very clear picture how things have been going by how much pain meds I take....

i note the weather, etc that might make my FM worse
I jot down TV shows that I want to remember to watch
I write down the name of books I want to read
i make a list of things to get done each day
i use the address pages to write down phone numbers, passwords, the names of the neighbor kids that i always forget
each page is just a place to write anything I want to remember now, or ahead of time

there is a montly calendar page, too so you can jot down appointments and birthdays and be able to see the whole month at once...

i tape online shopping coupons inside the front page
the datebook almost takes the place of a journal!

i also write down the name of movies that i want to add to netflix....when i start a movie, there are always previews of other movies, and i write them down in here

I also have a blank journal that i divide into sections....i clip photos from catalogs of things i want to get but i don't want to keep the whole catalog....and if you are an online shopper, you get lots and lots of catalogs!

when i pay the bills online, i write that down in the "BILLS" section....the date and the amount so I can tell at a glance whether I paid a bill or not...so i don't have to turn on the ocmputer and look it up....

i have a section for gift ideas that i fill in as people mention things they would like.....i have a list of books to read....

i have a Fibro Ideas section to write all the suggestions I hear here and everywhere!

I use the journal for recording my passwords and usernames for online

i also have a list of all my credit cards and the banks and phone numbers in case i lose them....

at christmas time, i record everything I buy for everyone so I can keep track....

this is a good place to write down your gifts and the names of the giver so you can write thank you notes....

I also have pretty journal for each year to record our family and my activities each day....

i have another journal for dreams and a place to vent when i get mad at someone or something.....

and i have a certain kind of cool gel pens i like to write and doodle with!!! hee hee!

Pace, pace, pace. Set your boundaries. Learn to not care what other people think. Share your energy between two places: work, tasks that you 'must' do; rest until you feel as often as you can; the other place to spend your energy....seek out someone else that could use encouragement, even those that you may not know that they need anything - I have been spending time telling at least one person a day, how much they mean to me, and what good qualities I see in them. It is very therapeutic.

I have a severe case of chronic fatigue, and have had it for so many years. If I leave the house to go somewhere, it is like preparing to go to the moon. I can barely breathe getting into the car. I do yoga breathing exercises and meditating. I have had to, long ago, get over the pride of not wanting to use a wheel chair.

I pray more than I eat. I believe there is a purpose for this........as there is for everything under heaven. I research, research, research........document, read, touch base with others that suffer with CFS. I surround myself with my family and grandchildren. Grandchildren mostly bring out the endorphines and adrenaline that help me to get through about an hour of feeling almost human. I take many of the supplements that doctors recommend: Dr. Teitelbaum's book, "From Fatigued to Fantastic".......the title of the book, for me, is misleading. I have suffered with this for so long, and I haven't found 'fantastic' yet.

My husband is my best support. From the beginning, I keep him informed of everything I come across. He has gone to all doctor appts. with me. He knows me and watches the reality of the illness just destroy the person that I have always been. I keep our daughters informed, as much as possible, of every piece of information that comes my way. They started out not being supportive at all. They are now a source of great support.

Hope this helps.