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Sharing the toolbox
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Booch007 posted:
I have been reading our threads and we are so supportive of eachother and hugging, but for a new person to the board....one who just gets diagnosed. We don't spend alot of time on our toolboxes...how we get out of trouble and what we do to feel *a bit* better.

So, I thought if we all shared here.....we could place it in favorites and they would be able to go back to it in hard times.

For me.... In a flare I got sunglasses on, hide from him..this dragon of ours......I hide in the shower. Warm water helps me alot. I massage in there and use the soap to help me work the muscles. Some take a bath, (I won't go there to the laughter when I joined and tried that) I am a shower person with a shower massage instrument in the head that detaches and can be aimed at the upper back muscles that hurt.....

I use Soma (muscle relaxant) 350mg. and Motrin was my staple now I have this for breakthrough above the Tramadol 37.5 mg that I use. I take 5mg of Valium when nights are rough and I can't get comfortable in bed, it helps the muscles and relaxes me to sleep.

My main muscles are in the neck where I choke when I lay down, the *scalenes, they are hard to treat but with trigger point injections, chiropractor and massage therapy...I fare well. I have a neck pillow with a towel under it to raise or lower the height so I can breath and sleep without headache....turn me on my back though and the headache begins..it will wake me up. I must be on my side. This is a muscular headache. Caused by the neck muscles.

I have a memory foam mattress on my bed for softness around those sore spots. Mmmm best tool I learned here on the board. I own 2 heating pads for use when necessary. I change my shoes everyday to a different pair to use different muscles in my legs and feet.

I walk on stones in the morning with stiff ankles 90+ until my meds kick in...It has helped to trick my legs with different shoes, support and styles. No more clogs and flip flops for me....they get me the next day.

I work, and at work..I lean up to door jams and rub and massage the spine and between *the wings.....I drink about 3 liters of **water a day. No junk. I truly believe we are what we eat..

I use the Fibromyalgia and Chronic Myofascial Pain Manual for resource. 19.99, written by Devin Starlanyl and Mary Ellen Copeland. I use this book to help figure out my symptoms and what I can DO ABOUT IT... I use it to teach my doctors the physiology of my pain, even for me it is so bizarre at times. I hate even telling someone. It makes no sense without seeing it.

In my home I changed my dishes to Corelle, as I drop things and they are the lightest to carry. I bought front loading washer and dryers for the push and pull that are triggers....I know that shopping and laundry are things done one day at a time. I know that rest is needed during the day, but I will hurt if I have crossed the line.

WHEN (and I do) I cross the line and trigger a flare of larger pain, all over S.O.B. Pain....I use this toolbox in circular motion. Meds....computer to distract me and talk with all of you and then a shower, if I have a headache too...I wash my hair and massage the scalp. Spend time drying my hair and body with the hairdryer..the warmth is good. I stretch and see how I do. Rest and then repeat the process til I win.

I give only one to two days tops to the dragon if I am in trouble, more then that laying around is another trigger and you are in trouble all over again. Depression then sets in....SO GET UP AND GET OUT...Use distraction to change your mind set, go get busy....find a sale, go to a pet store and hug some animals..or shelter and walk a dog, it is good for you and him...

I am sorry this is long, but I so wanted to share how I survive. My distraction and laughter meds are just as powerful ans the pills I take and I don't take many. I AM in pain, and I am in pain all the time. I just won't let him win. My doctor tells me, Nancy there is no cure. BU
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Booch007 responded:
BUT I will fight this dragon with all my heart. I have never felt so challenge with anything like this. I want out of this box and I will get this body to get better.

I share this lengthy story for those who can be helped by a hint or two, a glimpse into a day in my house.

I wake up 90+ y/o and get younger by 11 a.m. and then as the 3-4 p.m. time comes I age back to 90...by 8p.m. the couch and supporting my neck and muscles is all I have on my mind.

Some here have said we live just to work, and no other thing can be done...well almost true. It takes alot to do a days work. Sometimes getting home is difficult. NO MATTER how bad I feel I go.....after meds and movement, the distraction of patients..I do well...IT always seems to get better. And I need the health insurance.

I have a great husband who supports me, he doesn't always remember I am hurting and a nudge is needed. I forgive alot.

People who are not in pain, have no memory of pain. Yes you remember a time when you were hurting...but the mind has a mechanism to forget the actual feeling. So, no one gets it..BUT US. We are in this zone all the time it seems.

OK...Long winded, but I feel better. I hope this helps someone and I hope others put their toolboxes on the page for you to hold on to.

What works for one may not work for you...but know the tools that are out there....like StopPain cream. Alot of people have this. I share this with hopes for some relief for you...(you, anyone) Nancy B
 
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Anjl26 responded:
Wonderful post Nancy! I can list some things that I do too.

  • Memory foam mattress topper - the best thing I've bought thus far. Get the thickest one you can afford. You can also buy an eggcrate topper and place it underneath the memory foam to make it feel thicker.

  • Heating pads - I have two because it seems that there's never just ONE place that hurts alot.

  • Biofreeze - you can also try Stoppain, Aspercreme, Icey Hot etc. They provide temporary relief only but sometimes some is better than nothing

  • Stretching - everyday, multiple times a day. I use an exercise ball to really stretch my back (as well as isometric exercises) but stretch bands or even a towel can be useful.

  • Exercise - I am sometimes good at this, sometimes not. But I do use my exercise ball at least 5 times a week to do situps, hip hinges, leg lifts etc. I have lite hand weights, a recumbant stationary bike and a regular bike. I do alot of yardwork and try to incorporate more activity into my day

  • Relaxation CD - I have several. One I really like is by Belleruth Naparstek. It's specifically for FM and CFS, and contains guided imagery and affirmations. I have another that is only music which is great too.

  • Books etc - Everyone needs one good FM book. There are many to chose from. Another I recommend is No More Sleepless Nights by Peter Hauri. I've also joined the Natl Fibro Assoc, which gives me access to alot of information.

  • Scheduling/routine - I must keep to a regular routine most of the time. Bedtimes, awake times and work times. Hosuecleaning and yardwork must be done on seperate days. After work errands are spread out over the week instead of trying to do it all in one evening. Pacing is absolutely required.

  • Meds - I take Ambien, Ultram and Flexeril as needed. Usually one dose of ultram in the morning, then ambien and flexeril at bedtime. Sometimes a dose of advil is added in the afternoon.

  • Hot soaks - in the shower or hot tub, followed by stretching.

    I know there's probably more things I'll think of after I hit the post button.
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    lb707 responded:
    Great Post,

    Nancy good look into the life of fibro. I am sitting here with a heating bad on my back and heated rice bag on my neck waiting for the 20 min after my thyroid med so I can take something for pain.... that is so I can take with some food.

    Then it will be some Stopain for me and some stretches.

    I like you use the Chiropractor, massage and occasionally the acupuncturist..... when I am able to leave and go for the appointments.

    Must sleep on my back as too much trouble with shoulder pain. I have a memory topper on a latex mattress. I only sleep on it or the memory mattress in RV. The thoughts of Motels or visiting friends out of question.

    My neck is the worst.... so I never sit without a neck pillow. I have this wonderful massage cream full of herbs I got at a shop at the ocean. I massage it in for few minutes and then put a heating pad on it.

    I also use Soma and Alleve when I can no longer take the pain. My OA loves it when I take Glucosamine and seperately MSM. I have an herbal supplement with Turmeric and Boswelia that helps...Phenocane.

    Working is not longer possible I am now on SSD will be getting my first check next month. I do make every effort to keep busy..... and use my dogs as a great distraction. I also keep track of several elderly friends who are having a hard time. When I can't visit I call.

    I am one of thos who use a bath with Epson Salts... buy it by the cas at Costco and add a little aromatherapy.

    I read and post on this board to know I am not alone and that others like me are finding ways to go on with this beast

    You contiune to fight because you have no choice Fighting it does improve my mood I refuse to let it get the best of me...I haven't yet found the sliver lining but I can see the glass half full again.

    Laura
     
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    Dauniwan responded:
    For me having over 37 years practise and the oppertunity to try all the ways of taming this monster..

    Have narrowed my box to the common scense tools pace..stretch diet..n medicate..soaks n rubs .... heat often..and the good use of distractions like games on the computer...share laughs n keep laughing..laughter is the best medicine.And the wisdom to listen to my body and adjust accordingly...

    I use heated aqua therapy taught by arthritis foundation three days a week..I now use medicine on a regular basis..Have been on muscle relaxants for about all of the 37 years..But recent like last 6 years have come to accept real pain medicine and sleep aids as a regular tool..

    try to keep everything at a minimum( even and especially pill taking)..relaxing every chance i get..music t/v .... distractions come in many ways...

    There is no cure hardest thing to come to realize n then prepare for only some releif....not total...thus other distractions needed as well..

    Teen's push me up n out of bed..keeping my activity to a high Ide rather tone down a lil ..but am glad that push is here for me..I dont battle depression often yet ... n this i blame on the teen pushes...Im managing today...and the fact ive had soo long to accept and adjust..

    Welcome to any new learning here...Nice to meet you...

    Daun in mo..

    fall down seven times and get up eight.
     
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    Meme0221 responded:
    Great Post Nancy B!!

  • Acceptance of the "New You" is so important in keeping your self confidence, security, & inner strength! You are still YOU, just differently abled. I firmly believe in remembering/accepting all that you DO have to offer, dispite your current limitations!

  • Pacing yoursef is a MUST, even on good days. LISTEN to your body! Getting restorative/restful nights sleep is important. Rest & take breaks when your tired.

  • Recommend U trying STOPAIN, it's very cooling/tingliny, to relieve pain. Found @ WalMart, in the pharmacy section.

  • THERMIPAQ, theraputic hot/cold packs. Lavender rice/flax seed hot/cold packs help to relieve painful sore muscles.

  • Taking hot baths & soaking in epsom salt helps to alleviate the pain & stiffness! Heating pad, electric blankets, DeepHeating WelPatch R also helpful.

  • Doing gentle stretches before & after getting out of bed, & after a hot bath helps to loosen tight muscles, taking deep breaths as you do them.

  • Massage & hot stone therapy is a great alternative for temp. relief.

  • Walking & warm water therapy is a gentle way of getting in excercise into your weekly routine. This helps to keep you mobile. You cannot feel your weight in pounds in the water, as you don't feel your pain.. Dr's highly recommend this form of exercise!

  • Doing gentle exercises & stretches are good habits to gain muscle strength. Pilates & exercise body balls R great for stretching!

  • Tempur Pedic Mattress or Memory Foam Topper.

  • Simplify your life. Avoiding/preventing as much stress in all areas of our lives as much as possible is key, as this fuels added pain..

  • Following the recommendations of your dr & taking prescriptions as prescribe, responsibly.

  • Educate yourself & family. Keep up with new research. Print out info for friends/family.

  • Learning to ask for help, can be very beneficial, as this will relieve you of some tasks others can do.

  • Have a good support system. Staying connected with other people to avoid isolation & depression.

  • Excercise your brain daily to help keep your mental faculties stronger & to help brain fog by doing cross words games.. Challenge your mind doing mental exercises to keep your mind sharp..

    FM Books:

    ~~~~FM Books~~~~

  • Complete Idiots guide to Fibromyalgia...

  • Fibromyalgia: a comprehensive approach by Miryam Ehrlich Williamson

  • Fibromyalgia & Chronic Myofascial Pain 'A Survival Manual' There's a 1st & a *Second Editon' by Starlanyl Copeland

  • The Everything Health Guide to Fibromyalgia by Yu &McNett, MD

  • Fibromyalgia and the MindBodySpirit Connection by William B. Salt ll, MD and Edwin H.. Season, MD

  • The Fibromyalgia Solution (A Breakthrough Approach to Heal Your Body & Take Back Your Life) by David Dryland, MD with Lorie List

  • The Fibromyalgia Handbook (A 7-Step Program To Halt & Even Reverse FM) Third Edition by Harris H. McIiwain, MD, & Debra Fulghum Bruce, Ph.D.

  • Chronic Fatigue Syndrome, Fibromyalgia & Other Invisible Illnesses The Comprehensive Guide by Katrina Berne, PH.D.

  • What Your Dr May NOT tell you about Fibromyalgia by R.Paul ST. Amand, MD and Claudia Craig Marek

    To Healthier Living! ~*MeMe*~
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    Dollbug responded:
    Nana B.......MiMi in NC.....I tried one time to post and lost it....so I did not feel up to doing it again...and I forgot to copy it before I put the button.....anyway....I think this is worth posting and returning it wo those who are new or have just joined us to see...

    As most of you know.....I am one of the FMers who do not take medicine for FM.....I have tried many different kinds though and the side effects are more than my body cares to deal with....I do take prozac for depression....in the morning when I first get up....now I am not sure this is working like it should....but it does keep me from getting upset about things....I use to be one of those people who would cry at almost nothing....and when I participated in the sleep/depression study last summer, I was told that I was depressed, although I had never thought of myself as being depressed....the sleeping problems that I had indicated to the doctors that I was having problems with depression....anyway....during this study I was given prozac and either a sleeping pill or a placebo....I think I got the placebo....if not, the sleeping pill that I was given needs to be taken off the market....because it did nothing for me....

    Anyway, I take a lot of vitamins and supplements and I have learned to "control" my pain by taking magnesium and malate combinations supplements and Omegas, along with others....now I will tell everyone this.....several weeks ago, I started a thyroid supplement....and I do not know what is does to me....but I am sleeping better than I have in many years now....the doctor ran all sorts of tests on me though and did say my thyroid was normal....I do not think tests always show was is wrong with us....this was true with my parathyroid problem.....so I do not trust tests nor always trust what doctors tell us either....anyway....my sleep has gotten so much better and I owe this to the thyroid supplements...

    I do take other vitamins and supplements and I take a calcium and vitamin D supplement each and every day....it is time for me to go back for another check up test on that....and as most of you know....I try to encourage all new people to be sure and get their Vitamin D level checked.....a simple blood test but ever so important, as far as pain is concerned....

    I also use a heating/massage pad which stays in my recliner......or should I say my bed....I can not sleep in the bed yet....so I think that my FM has something to do with the spine...and the pressure on it....since I am in so very much more pain when I try to lie down flat....

    I also use Stopain....(thank you MeMe for this suggestion) and I would like to also encourage others who are having a lot of pain to get some of this....I got my daughter some and it does nothing for her chronic pain....but it sure helps mine for a while...

    I have also noticed that I need to keep myself on a regular schedule, if possible....with meals and vitamins....because this too does make a big difference...

    For my IBS, I take a probiotic when seems to help me each day.....

    I do try to pace myself and try to use the 30/15 minute rule.....work 30 minutes and rest 15 minutes....I can not get anything hardly started in 15 minutes....so I strength mine to 30 minutes...

    I am still having a big problem with chronic fatigue....but I am hoping that as I get more sleep each night...that this too might improve.....I hate being tired all of the time....or not having the energy level that I need.....but I guess this too is a part of FM....

    I also have muscle relaxers, if I need them....but I try to let them be my last resort.....

    I will say this....that if I try to keep my stress level at bay.....I know that I feel so much better....but the least little thing can cause me to stress out....and I know this is not good for the mind or the body....

    Thanks Nana.....for this post....very good...

    MiMi
     
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    Booch007 responded:
    Good job guys......

    What are you doing to help fill your toolbox...........??????

    Caprice?? Anyone else??? Nancy B
     
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    Socialwrkr responded:
    Ok, lets see if I can be coherent here!!

    1) Accepting that I have fibro, and so I can't do some things I've done before, but also realizing this may open new doors for me, and new experiences. My life isn't over, I just have to make some adjustments. And, I"M in charge, not the fibro!

    2) Working closely with a doctor who believes in fibro, and is willing to work with you. My doctor is fantastic, she listens, and she knows me. We are trying to find a good cocktail, understanding that next week, it may be different!

    3) Getting organized. I have to have things written down. I keep a very detailed calendar on my desk, and have info on my phone as well. I have a note by my bed reminding me to check my calendar. I got rid of clutter, and only have what I need now.

    4) De-Stressing I have learned that I can't change anyone's opinion of me, me having fibro, or anything else. So, it doesn't get to me anymore. I've heard all the comments, and I realize that they are just ignorant to fibro, and so, that's the end. It's not my job to teach them anything, and that is a lot of pressure off of me.

    5) Stretching. I never get out of bed or go to bed without stretching. I don't sit or stand for more than 15-30 minutes, without getting up and stretching. Gently! I also walk on my treadmill when I can, just 10 minutes at a time, but sometimes as much as 5 times a day.

    6) Giving myself a day of rest after a busy day. I had a wedding to go to on Saturday. I planned out my day, so that I wouldn't be stressed, and then I planned on Sunday being a day of rest for me. I need the time to allow my body to relax and rest.

    7) Pacing I never try to clean, do laundry and the grocery shopping all in one day. I split up physical tasks, and make it so everything is done once a week. If my bed doesn't get made, oh well! By decluttering my home, it's also made housecleaning much easier.

    StoPain it works for me on the long muscles, in my arms and legs. Just takes the OW down to an ow.

    9) Massages I get regular massage, and now I make my own massage oil, using aromatherapy recommendations for the mix. I love the smell, and it does work.

    10) Heating pad. Must have! I can't take baths, and the shower pounding sometimes is painful, but a heating pad always feels good!

    11) Humor. I have shirts that say things like "The one good thing about Pain is it reminds me I'm alive" and "I'm not lazy, I'm in pain". I have to laugh, otherwise I'd cry!

    12) A good support group. I couldn't find one, so I started my own. It's so comforting to sit in a circle with people who GET IT!

    13) Medications. I use vicodin and flexiril as my last ditch effort to curb the pain.

    I think that about covers my list. It's all about finding what works for you.

    Aimee
     
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    MahiFish responded:
    I use Biofreeze myself. I had meant to mention that somewhere. Thanks for reminding me that I have it.
     
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    Dollbug responded:
    Sorry about the boo boos......I really do know how to speak and spell most of the time....sometimes my fingers get faster than my mind or my mind goes faster than my fingers....and most of the time....I do not spell check or proof read the post.....I really try to do it right the first time....

    Just wanted to share this....

    MiMi
     
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    geeskat responded:
    Thank you to all who have shared their toolboxes. I joined at the right time. Although I have I had fibro for a few yrs, I am only now being to try understand the condition, the role I play, and what I might possibly do.

    Up to this point I am just trying to get a good nights sleep. I feel that is half the battle. I am not quite ready to fog my brain with meds, especially as I feel that I am not in a financial place to retire or go on disability.

    I will definitely try some of the otc ointments, epsom salts and heating pads. My original research led me to belief that none of these would work so I didn't even try. I now realize that while they might work for all there is no harm in trying.

    Thank you again I look forward to more shared insights. As well as a safe place to vent without judgment.
     
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    Socialwrkr responded:
    I forgot one!!

    14) I made my own rice socks! I filled a large men's athletic sock with uncooked rice and some lavendar leaves. Throw that in the microwave for a minute or two and wrap it around my neck at night. Ahhhh, the heat, the weight on my shoulders since I tend to hold them up tight all day, and the smell... ahhhhh

    On that note, time to warm up a sock!!!

    G'night!
     
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    MahiFish responded:
    Fibromyalgia & Chronic Myofascial Pain 'A Survival Manual' There's a 1st & a *Second Editon' by Starlanyl Copeland

    I picked up this book at the used book store today. Is it a good one? Anyone else read it?
     
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    Socialwrkr responded:
    It's one of the best ones to have! A true bible for someone who wants to understand, and be able to help themselves! Good find!!


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