Group photo
Author:
SMIDGON's Photo SMIDGON Posts: 5,549
6/20/15 4:26 P

My SparkPage
Send Private Message
Reply
Smells really bother me ! I have never been able to pin-point just which one it is.

Now, night meetings 'hit the nail' on the head.
The driving to a meeting,even if it's just a block away! I gt so droozy that I can bearly keep my eyes open for an hour! Then, when I get home, my head is throbbing! And, it's just 'leave me alone'.

Good to see you back, Sarah !

"All things work together for the good of those who love the Lord, and are called according to His purpose."

Romans 8:28

~+~ Janet


 current weight: 159.0 
181
168.25
155.5
142.75
130
ELZANNE2 Posts: 466
6/20/15 10:44 A

My SparkPage
Send Private Message
Reply
Good article, Sarah. It's right on. I hadn't pinned it down so clearly, but I make choices on all three levels, and I have found that often when I really want to do something that is questionable, I survive just fine, but usually pay for it later. It seems that the will acts as a lever to kick in adrenaline for the duration of the event. For me it (adrenaline?) then takes a little while to drain off, and then Wham, I'm down.

A whole new article and something it didn't touch on is the whole struggle of admitting/accepting that you must make choices If you don't want to deal with consequences.


 current weight: 183.0 
185
176.25
167.5
158.75
150
CD1322168 Posts: 26,911
6/19/15 11:12 P

Send Private Message
Reply
Best article I have read in a long time regarding fibro and activity!!! IT IS A BIT LENGTHY BUT OH SO WORTH IT! Read it and let me know what you think:)

3 Levels of Fibromyalgia Limitations
[ 64 votes ] [ 9 Comments ]
By Sue Ingebretson • www.ProHealth.com • March 16, 2015




3 Levels of Fibromyalgia Limitations
I don’t like to discuss my limitations, do you? It feels restrictive and confining to put what I can’t do into words. I’d much rather hop into topics such as options, opportunities, and healing. But understanding our limitations can help to develop a healthy respect for our personal experiences related to our fibromyalgia symptoms.

Here’s an example.

Years ago, a large tree branch fell on my car in a windstorm. The repairs took a couple of weeks and I ended up with a loaner. The rental car was brand spanking new and the agency employee gushed about how lucky I was.

I drove away to run a few errands and noticed the spread of a dull headache within the hour. I attributed it to the super warm day. Later, I felt sort of dizzy, fuzzy, and fatigued. By day’s end, I was nauseous and cranky to boot.

I went to bed early that night feeling somewhat better the next day. I was grateful that the fogginess and “tight” feeling in my head began to lift. Being on a tight writing deadline, I was glad I felt better since I had some major book edits to finish.

A few days later, I drove off to an appointment that was about an hour away. Within just a few minutes, I felt as if I’d been hit by a wrecking ball of dizziness, brain pain, and exhaustion. The “new car smell” was absolutely nauseating. I felt as if my head were stuck inside a dry cleaning bag.

It was the off-gassing of chemicals from the new car.

My appointment was mandatory, so I rolled down all the windows (even on the freeway) and got there feeling frazzled. I arrived with both my hair and stomach in knots. I dreaded the drive home.

Then it dawned on me, even if everyone else thinks a new car is a great thing … it’s not good for ME. I decided to drive straight to the rental agency and demand a different car. And, that’s what I did – except for the straight part.

You see, the fumes even messed with my cognitive abilities. In my meeting, I felt distracted, confused, and had trouble making decisions. Afterward, on my way to the rental agency, I got lost. Massively lost. Even in a completely familiar part of town, I couldn’t get my bearings. I just wanted to get away from the smell. I wanted OUT. Driving in circles, (this was before Google Maps on my cell phone), I finally arrived by default. Then ….

I jumped out of the car and ran as if it were on fire.

Everyone there thought I was nuts. Was I really requesting an older car? When I made the switch, I did a sniff test to make sure my replacement car wasn’t new, hadn’t been used by a smoker, and didn’t have any offensive and stinky air fresheners. It took several days afterward to detox and recover. The headache lingered for nearly a week. On the upside, this time of forced rest provided me with ample opportunity to assess the situation.

You see, I knew that some smells bothered me more than others. I’m super-sensitive to chemicals in scented candles, room fresheners, detergents, perfumes, smoke, pesticides, herbicides, paints, lacquers, solvents, and more. But I didn’t respect my own boundaries. I thought, “I can tough it out for a few days.”

Have you ever felt that way?

We fibrofolk are sensitive souls. We’re sensitive to many things including lights, smells, touch, foods, sounds, and more. Learning this helps us to develop awareness and respect for our own space and circumstances. When we define an offending smell, environment, or experience, we can begin to protect ourselves from it.

An offensive smell is one thing, but have you ever noticed an increase in symptoms from specific activities or even from specific people? I’m often told by clients that certain work situations send their fight or flight responses into overdrive. The same is true for certain colleagues, neighbors, family members, or friends.

We can’t always choose who we spend time with, but we can choose how we let them affect us. It takes a bit of awareness and pre-planning. Planning ahead gives us a sense of empowerment. If we know that someone is likely to get on our last nerve, we can minimize exposure to the person, invite others to join in (creating a buffer), or avoid the activity all together. If it can’t be avoided, then we do our best.

Just as Spiderman develops his Spidey sense, those of us with fibromyalgia develop our Fibro Sense (well, maybe not “just as”). By increasing our awareness, we begin to see how we’re bothered by differing things. That hyper-awareness can be self-preservation in action.

How Desire Plays a Role in What We Choose to Do

Years ago, I was approached by a man who sold carpet to a company that I worked for. He said that he felt his wife was “faking it” when it came to her fibromyalgia symptoms. Of course, I bristled at his assessment, but it definitely got my attention. He went on to explain that she had a hard time getting out of bed in the morning, and that she needed help from family and friends to care for their young children. He understood that, but then explained that her all-time favorite activity (before fibro) was dirt bike riding. It required a lot of stamina and focus to ride over bumpy and dusty terrain.

After her diagnosis, she didn’t participate in this activity often, but sometimes, she’d go out with friends and spend a weekend riding “desert toys” and having a blast. He was always irritated to hear that she was the first one up in the morning, geared up and ready to go.

I guess he had a point.

It could appear that her weekday
fibromyalgia symptoms were a charade.

But, it’s not that simple, is it?

I asked him how she felt when she came back. Upon reflection, he said that she was a complete chatterbox when we first got home, but then was wiped out for about a week afterward.

I told him what I often say about my personal fibromyalgia limitations: I can do whatever I want to do. I just have to decide if paying for it afterward is worth it.

And, for his wife, the tradeoff was worth it.

For me, a day at Disneyland with my kids and grandkids is worth it. A shopping day at a large mall for high school dance dress with my granddaughter is worth it. For you, the circumstances may be different, but the point is the same. Desire goes a long way toward mitigating our symptom payback. I don’t like to set myself up by assuming that my symptoms will increase afterward (sometimes they do and sometimes they don’t), but I do plan in advance. I choose whether or not to participate based on my self-awareness and desire to participate.

Now that you have a better idea of how awareness – in advance – can help you to define your personalized limitations, here are the Three Levels of Fibromyalgia Limitations, as I see them. Your specifics may differ, but the categories are likely similar.

Limitation Level #1 - Not for Me

This is the level where you’ve learned (usually the hard way) that some activity, event, or possibly an ingredient is simply not healthy for you. You’ve tried to mitigate or compromise with this offensive element, but find that it’s simply best to avoid it or stay away all together. This often relates to toxic things such as foods, chemicals, and even toxic relationships.

There are not usually exceptions to this level of limitation.

Limitation Level #2 - Not Typically

This level applies to activities or events that usually bother you enough that you decide to “just say no.” For me, an example of this is evening meetings. I find that they typically take more from me than they give. I feel quite drained the next day, and it’s just not worth it, unless there is a great need for me to attend.

There are seldom – but sometimes – exceptions to this level of limitation.

Limitation Level #3 - Not Today

This level applies to activities, events, or relationships that you find are tolerable when you’re feeling well, but they try your patience (or energy reserves) at other times. You get to choose when to apply your Level 3 Limitation rule. You get to base your decision on how you feel at the time.

Exceptions to this level of limitation are assessed on a day-to-day basis.

How Would You Rate Your Levels of Limitations?

Now that you’ve been made aware of the connection between awareness, desire, and your personal fibromyalgia limitations, how will you plan your activities in advance? Will you review your options with an eye toward preserving your energy levels and avoiding symptom flares?

Within the confines of your own experience, you get to choose what environment surrounds you.

By assessing your personal fibromyalgia limitations, you become better-equipped to protect your own boundaries. Apply self-care in liberal doses to your daily activities to ensure a smooth path toward your health goals!
_______________


CD1322168 Posts: 26,911
6/8/15 5:37 P

Send Private Message
Reply
So glad you are enjoying them and that someone is actually finding them useful:) Feel free to post any article you find interesting also.
Hugs,
Sarah

SLEANNES66's Photo SLEANNES66 Posts: 799
6/4/15 9:02 P

My SparkPage
Send Private Message
Reply
I'm learning a lot from reading your posts.

Edited by: SLEANNES66 at: 6/4/2015 (21:04)
CD1322168 Posts: 26,911
11/19/14 5:39 P

Send Private Message
Reply


Tame Your Holiday Fibro Frenzy
]
By Sue Ingebretson • www.ProHealth.com • November 17, 2014


Tame Your Holiday Fibro Frenzy
Would you like to get through the holiday season with more freedom and less frenzy? Would you like to tame your fibromyalgia flares into submission rather than see them spiral out of control?

I feel your pain (almost literally).

Before Christmas of 2002, I found myself sitting at my dining room table staring at piles of my medical bills, pharmaceutical receipts, lab results, etc. You get the picture. Although I’d seen nearly two dozen doctors and had spent more money and more time than I wished to admit, I was no closer to a diagnosis.

Every doctor said, “There’s nothing wrong with you.”

I wanted to believe them … but, I knew it wasn’t true.

If nothing was wrong, then why was I in such horrific pain day and night? Why couldn’t I sleep? Why didn’t it go away? Why was it worse at some times and better at others?

This last question really struck a nerve with me. I realized that while I had no idea WHAT was wrong, I could use deductive reasoning to look back and determine WHEN my symptoms were at their worst.

I began to sift through the sea of papers and put them into piles according to my symptoms. Then I sorted then according to when they occurred. I quickly saw it was too much to view all in one place, so I sketched out a quick spreadsheet on the back cover of a notebook. Eventually, I transferred that data into my computer.

I include a detailed description of this scenario in my book, FibroWHYalgia if you’d like to read more about it there. What I learned from this practice, was far more than I ever expected.

I not only figured out my own diagnosis of fibromyalgia;
I figured out how to predict my symptom flares.

And, what does this have to do with the holidays, you may ask?

I learned the value of a map.

My spreadsheet was, in essence, a map of my past. From it, I could plan out my current activities and see a clearer view of my future (all on one page).

At this time of year, many of us feel burdened by our own expectations. Is it a time of celebration of sabotage? Overextending ourselves (with food, money, time, and energy), can result in pain, fatigue, fogginess, increased body and head aches, and more.

If you could wish on a Christmas star at this hectic time of year, would you wish for the following?
To feel your circumstances are manageable

To feel your holiday budget is manageable

To feel your personal energy resources are manageable

To feel a general sense of peace and calm about your circumstances

Fortunately, the answers to all of the above “wishes” have one thing in common – a map. Each of the above wishes can be achieved by following a map, or plan, for the weeks ahead.

Create your own holiday task map

Here’s a simple 4 Step process to help you map out – and see on one page – your tasks and plans for the weeks ahead
Jot down a list of the activities you plan to undertake between now and New Years

Include money expenditures
Include time expenditures
Include all shopping and prep activities
Transfer your tasks onto a blank calendar for the month (use a pencil). Blank calendar pages can be found here, or through your own word processing programs such as Word.

Sit back and take an objective view of your calendar. Are your expectations even realistic? Can everything you plan to do get done? Is the budget reflected on the calendar doable? Take some time to review, analyze, and make adjustments to this document.

Make liberal use of your pencil eraser. Erase the activities that simply don’t fit into your list of priorities. Adjust your expectations and “get real.” Only leave the activities that truly feed your soul, are affirming to you and your family, and those that support your health goals.

When tackling Step #4, keep this in mind –

We may want to do it all and have it all,
but is the price we pay really worth it?

Some of you may say that you don’t have the time to plan ahead and create your own maps. If this is you, here are a few solid reasons to reconsider.
Creating a firm plan of action allows you to assess your plans as they relate to your resources. Do you really have the time, the money, or the energy?

Creating your own map allows you to easily see (at a glance) a step-by-step process which helps to reduce anxiety over “getting it all done.”

Creating your map provides you with a way to track your progress which further affirms your goals.

Creating your map allows you to visualize your priorities and place them first on your “to do” list.

Visualizing your map as a work in progress (i.e. writing in pencil) allows you to be flexible and make adjustments as needed. We could all use a contingency plan at this frenetic time of year!

Planning ahead – and visualizing your plan – allows you to feel confident and in control of your available resources. You know what’s ahead, and you’ve budgeted your time, energy, and resources accordingly.

Follow these steps and you’ll be sure to streamline your holiday task list. By setting your priorities first, you can stay within your budget while keeping your sanity.

Here’s an unavoidable fact:
You can’t please everyone.

Burning the candle at both ends and risking your own health serves no purpose. It’s time to make your own health resources a priority and tackle what’s important to you.

You can map out everything!

Now that you’ve got the hang of mapping things out, you can apply this new skill to all of your holiday plans! A wealth of printable, downloadable spreadsheets, templates, guides, and worksheets on all sorts of topics are available online. To get you started, here are several to choose from on a variety of topics.

Start mapping out your holiday season, right now!



CD14378621 Posts: 537
11/12/14 7:42 A

Send Private Message
Reply
This is exactly why I work to research the effects Christian music therapy can have on fibro. patients. As I read the vast amount of research for my dissertation I find I become greatly discouraged about the fact there seems to be no solution or behavior therapy for what they research. I find it aggrevating to say the least.

CD1322168 Posts: 26,911
9/23/14 12:40 P

Send Private Message
Reply
I totally agree Mary Beth.

MBPP50's Photo MBPP50 Posts: 49,901
9/21/14 4:31 P

My SparkPage
Send Private Message
Reply
I've seem similar type research before- time for all the researchers to stop researching causes and come up with some solutions!

There are no great acts of love, only small acts done with great love- Mother Teresa
CD1322168 Posts: 26,911
9/21/14 4:23 P

Send Private Message
Reply
New article I found on fibro research: VERY INTERESTING!!!



Brain study hints at how fibromyalgia works

Reuters By Kathryn Doyle
September 19, 2014 3:15 PM

By Kathryn Doyle

NEW YORK (Reuters Health) - Brain scans show that people with the pain disorder fibromyalgia react differently to what others would consider non-painful sights and sounds, new research suggests.

The small new study provides clues to what might be going wrong in the nervous system of people with fibromyalgia, along with possible new approaches to alleviating their pain.

“If we understand the mechanism, we may come up with new and potentially better forms of treatment,” said lead author Marina López-Solà of the department of Psychology and Neuroscience at the University of Colorado, Boulder.

Fibromyalgia, which patients experience as widespread muscle pain and fatigue, affects as many as five million Americans, most commonly middle-aged women, according to the U.S. Department of Health and Human Services.

Its cause is unknown and there is no cure, but medications can treat the symptoms.

The new results suggest not only that fibromyalgia is related to greater processing of pain-related signals, but also potentially to a misprocessing of other types of non-painful sensory signals that may be important to address during treatment, Lopez-Sola told Reuters Health by email.

She and her team used "functional magnetic resonance imaging," which measures blood flow changes in the brain, to assess brain responses among 35 women with fibromyalgia and 25 similar women without the disorder.

The fibromyalgia patients were more sensitive to non-painful stimulation compared to people without the disorder, they report in Arthritis and Rheumatism.

Researchers showed the subjects some colors, played some tones and asked subjects to perform very simple motor tasks at the same time, like touching the tip of the right thumb with another finger.

Areas of the brain’s cortex primarily responsible for processing visual, auditory and motor signals were significantly activated in the healthy comparison group, but not in the fibromyalgia group.

However, other brain regions that are not relevant for primary processing were activated in fibromyalgia sufferers but not in healthy controls.

What seems to be happening is that the brains of fibromyalgia patients are under-processing certain forms of sensory information at the first stages of processing, but are also amplifying the signal at a later level of sensory integration of multiple sensory inputs, Lopez-Sola said.

“When you are in pain, it is probable that you are more concentrated on your own pain than on the tasks you have to pay attention to,” said Dr. Pedro Montoya of the Research Institute on Health Sciences at the Universitat Illes Balears in Palma de Mallorca, Spain, who was not part of the new study.

“For me, these findings provide further support for the idea that psychological strategies aimed at changing the focus of attention from the body to external cues could be useful for these patients,” Montoya said.

There were only a small number of people involved in the study, and the researchers did not account for other mental health conditions the participants may have had, both factors that limit the results, said Dr. Winfried Hauser, associate professor of Psychosomatic Medicine at Technische Universitat Munchen in Germany.

People with fibromyalgia often also have conditions like depression, so some people believe the disorder has a mental basis, said Michael E. Geisser, professor in the department of physical medicine and rehabilitation at the University of Michigan in Ann Arbor.

But evidence for a neuro-anatomical basis for fibromyalgia is growing, said Geisser, who was not part of the new study.

“There is increasing evidence that fibromyalgia is not just a pain condition,” he told Reuters Health by email. “More recent research done on persons with fibromyalgia, such as the research by Lopez-Sola and colleagues, suggests that persons with fibromyalgia suffer from a central processing deficit of multiple types of sensory stimuli, not just pain.”

“It’s as if the volume control for sensation in persons with fibromyalgia is turned up, or louder, for many types of sensation compared to persons without the disorder,” he said.

That might help explain why many people with fibromyalgia also often suffer from fatigue, cognitive problems or mood disturbance, Geisser said.

Currently, people with the disorder can take anticonvulsant medications, such as pregabalin (Lyrica), and antidepressants such as duloxetine (Cymbalta) and milnacipran (Savella), which have been FDA approved for treating fibromyalgia.

Further research to improve understanding of where there are problems in the brain for people with the disorder could lead to the development of new treatments, Geisser said.

For example, it would be interesting to see if a treatment targeted at dampening response in an area of the brain that “overreacted” in this study helped to treat fibromyalgia symptoms, he said.

SOURCE: http://bit.ly/1mbOikg Arthritis and Rheumatism, online September 15, 2014.

MBPP50's Photo MBPP50 Posts: 49,901
9/15/14 4:12 P

My SparkPage
Send Private Message
Reply
Cynthia, I have a heated mattress pad and it love it! Problem is, we are still having 90 degree weather here!

There are no great acts of love, only small acts done with great love- Mother Teresa
HLTHAPPINESS4C's Photo HLTHAPPINESS4C Posts: 42,681
9/15/14 2:36 P

My SparkPage
Send Private Message
Reply
Sarah~ Read the article on sleep. The first part I really want my boyfriend to read...He just can not seem to understand why I feel so bad despite a good night's rest. He thinks I should just be energized and just ready to go go go.

I like to take a hot bath before bed. I did so last night, and got the best night's sleep I have had in awhile; although I did wake up several times in the night. Still better than the 2 hour of sleep nights.

I used to have a heated mattress pad growing up. LOVED it. I would like to get one for winter, but I simply can not put in my budget. I missed out on the clearance sale of them last season.

Thank you for posting the article.

Cynthia

South Carolina The Palmetto State
Eastern Time


Proverbs 3;5-6
Trust in the Lord with all your heart and lean not on your own understanding; acknowledge him, and He will make your paths straight.
~~~~~~~~~~~~~~


 August SparkPoints: 79
0
662.5
1325
1987.5
2650
MBPP50's Photo MBPP50 Posts: 49,901
9/12/14 1:32 P

My SparkPage
Send Private Message
Reply
Thanks Sarah!

There are no great acts of love, only small acts done with great love- Mother Teresa
CD1322168 Posts: 26,911
9/12/14 12:56 P

Send Private Message
Reply


Flu Shots: Should You Get One if You Have Fibromyalgia?
Karen Lee Richards Health Guide October 12, 2011

Every year as flu season nears, fibromyalgia and ME/CFS patients wrestle with the question of whether or not to get a flu shot. Unfortunately, there is not a simple one-size-fits-all answer.

The Centers for Disease Control (CDC) recommends that everyone six months of age and older get a flu vaccine. While most conventional doctors agree with the CDC and recommend flu vaccinations across the board, many FM and ME/CFS specialists advise their patients against getting the shot.

What FM and ME/CFS Specialists Say

Even among specialists, there are differing opinions about whether the flu vaccine is a good idea for FM and ME/CFS patients.

Infectious Disease Specialist Dr. Kent Holtorf strongly recommended that people with mitrochondrial dysfunction, chronic neurological illnesses, fibromyalgia and ME/CFS not get the H1N1 vaccine because, to use his word, he has seen it “devastate” them.

Due to reports of severe relapses following immunization, Charles Lapp, MD, Director of the Hunter-Hopkins Center in Charlotte, NC, generally does not recommend flu shots of any kind for his FM and ME/CFS patients. There are, however, two exceptions:
Patients who have taken flu vaccinations in the past and tolerated them well.
Patients who have a serious chronic illness (such as emphysema, diabetes or heart disease) in addition to FM or ME/CFS.
Charles Shepherd, MD, a U.K. doctor who is a member of the Chief Medical Officer’s Working Group on CFS/ME at the U.K. Department of Health, agrees with Dr. Lapp. He has found that a substantial percentage of his ME/CFS patients have mild-to-moderate relapses after receiving flu vaccinations.

On the other hand, Anthony Komaroff, MD, Professor of Medicine at Harvard Medical School, and Jacob Teitelbaum, MD, the medical director of the Fibromyalgia and Fatigue Centers, feels the benefits outweigh the risks because the effects of the flu on FM and ME/CFS patients can be severe and long lasting.

Should You Get a Flu Shot?

There is no single right answer for every FM and ME/CFS patient. You and your doctor should discuss the pros and cons as they apply to your particular case and then make the decision together. Here are some points to ponder as you prepare to talk with your doctor:

• There is some evidence that the immune systems of people with FM and ME/CFS are already in a state of chronic activation. In that case, any kind of immunization could push this hyper-stimulated state into overdrive, which could significantly increase your symptoms.

• What is your exposure level? If you’re largely homebound and have limited contact with other people, your risk of exposure to the flu will be minimal. On the other hand, if you have school-age children who bring home every germ and virus imaginable, then your chances of catching the flu will me much higher.
- See more at: http://www.healthcentral.com/chronic-pain/
c/5949/145399/fibromyalgia/#sthash.mUO
KwUrN.dpuf

CD1322168 Posts: 26,911
9/11/14 1:06 P

Send Private Message
Reply
Fibromyalgia Pain at Night
10 Tips for Better Sleep

By Jeanie Lerche Davis
Reviewed By Brunilda Nazario, MD

Do you toss and turn at night because of fibromyalgia pain or discomfort?

"People with fibromyalgia tend to have very disturbed sleep," says Doris Cope, MD, director of Pain Management at the University of Pittsburgh School of Medicine. "Even if they sleep 10 hours a night, they still feel fatigued, don't feel rested."

Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued.

The result: The body can't recuperate from the day's stresses -- all of which overwhelms the system, creating a great sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of fibromyalgia.

Insomnia takes many forms -- trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Smoothing out those sleep problems -- and helping people get the deep sleep their bodies need -- helps fibromyalgia pain improve significantly, research shows.

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally.

Tips to Get Better Sleep With Fibromyalgia

Creating a comfort zone at home is key to better sleep, whether you have fibromyalgia or not. It's all about easing into bedtime feeling relaxed -- and staying relaxed so you sleep through the night.

These 10 tips can help people sleep better:

Enjoy a soothing (warm) bath in the evening.

Brush your body with a loofah or long-handled brush in the bath.

Ease painful tender points with a self-massage device (like a tennis ball).

Do yoga and stretching exercises to relax.

Listen to calming music.

Meditate to tame intrusive thoughts and tension.

Sleep in a darkened room. Try an eye mask if necessary.

Keep the room as quiet as possible (or use a white-noise machine).

Make sure the room temperature is comfortable.

Avoid foods that contain caffeine, including teas, colas, and chocolate.


Comment by Sarah:
Do any of you have any other suggestions for getting a good nights sleep?

I sleep on a cuddle ewe under quilt which is supposed to keep people with fibro more comfortable...I have had mine for years...they are pricey but worth it in my opinion. Maybe a down under quilt would work as well. I am looking to purchase a heated mattress pad type thing for winter.



LINDAF49's Photo LINDAF49 Posts: 15,004
9/2/14 12:42 A

My SparkPage
Send Private Message
Reply
Copied it and read it and will comment later ...GOOD stuff here!!

Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2021 immediate goal of 199.5# = ONEderland Long term goal of 170#


 current weight: 212.0 
238
222.25
206.5
190.75
175
CD1322168 Posts: 26,911
8/31/14 3:38 P

Send Private Message
Reply
Here are some simple coping strategies you can use to help yourself live well with fibromyalgia:

Minimize stress in your life. There's speculation that stress may play an important role in triggering fibromyalgia symptoms. In fact, many people with fibromyalgia tell of feeling anxious, nervous, and panicked around the time when fibromyalgia symptoms flare. Some experts find that when fibromyalgia patients reduce stress in their lives, they also experience a reduction in depression, anxiety, and fatigue. Sleep becomes more restful and their minds relax. Because they feel more in control, the symptoms that were once immobilizing subside, and quality of life improves.
Remove yourself emotionally from stressful situations. Sometimes, people magnify problems, making them seem far greater than they are. The stress reaction is triggered by perception. When you imagine something to be a "life or death situation," even though in reality it isn't, your body reacts as if you are in danger. Work at tempering your emotions as problems come up throughout the day. Instead of seeing every crisis as "horrible," learn to view life's interruptions as "inconvenient, but tolerable." You will find that when you see life as something that you can easily handle, you will not feel overpowered when trouble comes.

Make job site modifications. To keep working part-time or full-time, you must stay mentally and physically able to handle your job responsibilities. But to avoid stress and anxiety, you may need to allow more time during the day to get your responsibilities done. Talk to your employer and work out a flexible schedule that allows you to come in later and leave later. Or ask your employer if you can work at home two mornings a week so you can get more rest or take a nap at lunch time to boost your energy. Whatever modifications you make, avoid procrastination. Budget your time, follow your daily "to do" lists, and limit your outside commitments on work days.

Work to improve communication skills. Communication is also important with a chronic condition like fibromyalgia. Open and honest communication helps decrease conflict between you and your spouse, family, friends, and co-workers. This is especially true when you feel angry or resentful over having unending pain and fatigue. The mental distraction can hinder productive communication. If you feel overwhelmed with the stress of fibromyalgia, psychological counseling can help you develop appropriate and functional communication strategies to deal with your disease and other issues in your life.

Learn to say "no." Failing to set personal limits or not saying "no" to too many demands will put you in overload. That will add to your already elevated stress level. To help yourself say "no" to a persuasive friend think through the situation before you answer. Check your calendar, and weigh the alternatives. Involve family members or friends in the discussion about what to do. Would another commitment stop you from getting the rest, exercise, and relaxation you need to feel well? Would it interfere with the priorities that are high on your list? The desire to help others is commendable. But being all things to all people may be hindering your healing and making you feel resentful, tired, and depressed. It's important to take a firm stand, say "no," and mean it.

Keep a daily journal. Writing in a journal every day can become a great tool for self inquiry. Some people are able to identify a series of events that are associated with the beginning of fibromyalgia symptoms. That can help them understand how and when symptoms start. Keeping a journal can also assist you in tracking your muscle pain and fatigue and in identifying what may cause them. For example, you may write in your journal that you are having great pain and feeling exhausted after doing yard work with fibromyalgia for several days. Months later, you might look back on this entry and perhaps recognize a pattern that identifies a relationship between your increased fibromyalgia symptoms and certain lifestyle triggers. Or perhaps you haven't slept well in days. Looking back over your journal may enable you to see any emotional or physical problems that have contributed to your sleep problem.

Soak in a warm bath. Soaking in a warm bath, hot tub, or sauna or standing under a warm shower will serve two purposes. First, it will help you to relax tense muscles, reduce pain, and move more easily. Second, some studies show that the warm, moist heat may raise levels of endorphins and decrease levels of stress hormones. There may be an additional benefit as well. Health care professionals that specialize in sleep disorders have found that a warm bath before bedtime can help sleep be more restful.

Exercise regularly. According to the Arthritis Foundation, exercising regularly is important to ease symptoms of fibromyalgia. Because of the pain, tender points, ongoing fatigue, and stiffness felt by people with fibromyalgia, many have become physically unfit. Aerobic or conditioning exercises -- such as walking, swimming, and biking -- have analgesic and antidepressant effects. Aerobic exercise can help enhance your sense of well-being and feeling of being in control.

Eliminate or reduce caffeine intake. Caffeine is one of the few food products that can induce a stress response. Too much caffeine can greatly increase nervousness, anxiety, and insomnia. As you make plans to de-stress your life, try limiting the amount of caffeine you take in. And remember, coffee is not the only source of caffeine. Tea and chocolate also contain caffeine.

Use mind/body tools for relaxation. There are many relaxation techniques you can use to ease daily tension, anxiety, and pain. You might learn to relax with guided imagery, visualization, meditation, progressive muscle relaxation, deep abdominal breathing, self-hypnosis, or biofeedback. When you meditate and experience the relaxation response, your body is allowed permission to switch from the pumping "fight or flight" response into a calmer more peaceful mood. Studies show that when you step back from problems and use mind/body tools to relax, you produce brain waves consistent with serenity and happiness. In addition, talk with a counselor about ways to minimize negative self talk so you can become more optimistic about yourself and your illness.

Evaluate your sleep hygiene. Make sure your body is totally prepared for rest. You can't sleep if there is light in your room or if a TV is blaring in another room. Make sure your room is quiet, dark, and cool. Use earplugs if you are sensitive to noise, and wear an eye mask to block light. Eliminate afternoon caffeine from your diet, and exercise regularly -- although not near bedtime. Sometimes a snack that's high in carbohydrates can help induce sleep because it boosts levels of serotonin in your body. Serotonin is a chemical messenger that helps regulate mood, appetite, and sleep.

Consider joining a fibromyalgia support group. Support groups are geared toward meeting the needs of people with fibromyalgia. Support groups, which are often educational, are not psychotherapy groups. But they do provide patients and their families with a safe and accepting environment where they can vent their frustrations, share their personal stories, and receive comfort and encouragement from others. Ask your physician for some recommendations or check with the Arthritis Foundation for support groups in your area.

Make time for you each day. Work for an overall lifestyle balance. Make time to do the things you "want" to do as well as the things you "have" to do. People with fibromyalgia are faced with special demands that other healthy people do not have. The task of coping with pain and fatigue each day makes it necessary to keep your priorities in order so you have the energy to reach your daily goals.


CTUPTON's Photo CTUPTON SparkPoints: (220,464)
Fitness Minutes: (39,950)
Posts: 17,139
8/26/14 12:38 P

My SparkPage
Send Private Message
Reply
These all are wonderful bits of advice. I surely need them. chris

near Buffalo, NY
LONG TERM GOAL: Reduce A1C,BP,tryglicerides,and weight.
Founder of this team: Evening Eating Sabotage Myself Frustration ..Help! www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=51755


 Pounds lost: 39.0 
0
11.25
22.5
33.75
45
CD1322168 Posts: 26,911
8/15/14 9:37 P

Send Private Message
Reply
Yes...most of us are familiar with them but it is a god reminder.....and sometimes you look at the list and say..aha..I haven't been doing that like I should.
Ooh bad bad brain fog...better get off here....

LINDAF49's Photo LINDAF49 Posts: 15,004
8/15/14 2:08 P

My SparkPage
Send Private Message
Reply
Excellent, simple list of ides ...nothing new for me but confirmation and reminder to always be watching the different things in the list.

Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2021 immediate goal of 199.5# = ONEderland Long term goal of 170#


 current weight: 212.0 
238
222.25
206.5
190.75
175
CD1322168 Posts: 26,911
8/12/14 2:41 P

Send Private Message
Reply
Fatigue


Everyone needs a good night's sleep. Having fibro makes that particularly important.

If you have fibro and need a nap to get through the day, that's a sign that you may need to make some changes so you don't get so fatigued.

Try these 10 tips to help you have more energy.

1. Watch what you eat. Your body needs the right fuel to get through the day. Eat fresh foods like lean protein, whole grains, fruits, and vegetables. Avoid sugars or starchy items that give you a short-term boost and then leave you drained.

2. Stay active. Regular exercise like walking or swimming can ease your pain so you sleep better. Activity can also boost your energy during the day.

3. Skip caffeine, nicotine, and alcohol before bedtime. You may think smoking a cigarette, sipping hot tea, or having a cocktail will relax you. But they make it harder for you to fall asleep or stay asleep.

4. Set a solid sleep schedule. Your body prefers a regular routine to shut down and sleep. Try to go to bed at the same time each night and wake up at the same time each morning. Alarms on your clock or phone can help you stay on track.

5. Don’t eat for 2 to 3 hours before bedtime. If your body has to digest a heavy meal, you may not be able to fall asleep. Stomach gas may also keep you awake.

6. Relax before bedtime. Take a soothing, warm bath to ease your joint pain and stiffness. Listen to soft music or read a book to take your mind off your work or daily stress.

7. Make your bedroom for sleep and sex only. Remove the TV, computer, cell phone, and other distractions from your bedroom. Keep the room dark, quiet, and cool so you can fall asleep.

8. Use comfortable, supportive bedding. If your mattress or pillows are uncomfortable, you may not be able to stay asleep. Your pain may grow worse. Consider changing pillows or buying a new mattress.

9. Find your energy boosters. When you feel tired during the day, find ways to perk up. Listen to upbeat music. Step outside into the sunshine. Take a short walk break at work. Enjoy a good-for-you snack like fresh fruit or nuts to give you a dose of energy.

10. Follow your treatment plan. Take your medications as prescribed, so you can ease inflammation and pain that may play a role in your fatigue. Set reminders so you take them on time. If you feel side effects, let your doctor know. Don't adjust the dose or stop taking them on your own.



CD1322168 Posts: 26,911
6/30/14 1:07 P

Send Private Message
Reply
Thats funny Sylvia.....but yes you SHOULD take a break....

CD6282161 Posts: 698
6/29/14 5:01 P

Reply
My "shoulds" list gets longer by the day....

Yes - I should add "take a break," lol. emoticon



emoticon

CD1322168 Posts: 26,911
6/27/14 11:08 P

Send Private Message
Reply
ME TIME!!!!



"We're a multitasking society. If we're having a conversation with a friend, we're thinking about the other things we have to get done," says Allison Cohen, a marriage and family therapist in Los Angeles. "Instead, you need to be present in the moment. Whatever you're doing for you, don't be thinking about your grocery list or the PowerPoint presentation. There's a lot of time in our day that we could be enjoying, but we lose it because we're focused on what we have to do next."

You don’t need a lot of time, either. Here are ideas for making the most of even 5 minutes of "me" time.



If You Have 5-10 Minutes

Sit on the porch with a cup of coffee and the newspaper. Or a cup of coffee and no newspaper. Just watch the clouds go by. No phone or calendar allowed.
Call a friend to chat. This doesn't mean planning the bake sale or organizing the neighborhood watch -- just talk, without an agenda.
Move. Get up from your desk, stretch, and walk around the block or up and down a flight of stairs.
Breathe deeply. While you're sitting in your office, car, or home, focus on breathing slowly and gently for 5 minutes. It's OK if your mind wanders a bit, but don't start planning what you have to do next -- just follow your breath.
Pet your pet. Focus for 5 minutes on cuddling with cat or dog. You'll both feel better.
Put on your iPod and hit shuffle. Then just sit and listen.


If You Have 15-30 Minutes

Read one chapter of a book you've wanted to make time for. Keep a basket in your office or living room with a good book, magazine, crossword puzzle, or other short escapes.
Find a nearby park and go for a brisk walk.
Putter. This doesn't mean cleaning the house or organizing your kids' clothes. Instead, it means doing little things at home that you enjoy, like trimming the rosebush and putting together a bouquet for your office or kitchen.
Soak in the tub. If you're a parent, make sure another adult is on duty so no one's going to yell "Mom!" Plan so you'll have some fabulous bath goodies on hand. Don't forget a glass of ice water or wine.


If You Have 30-60 Minutes

Get a massage, a facial, or a mani-pedi.
Take a nap.
Schedule a class that you've always wanted to take just for fun. For instance, Amy Tiemann took an improv comedy class to get a night to herself after her daughter was born.
Plan a long walk with a friend. Commit to it early in the week and honor the commitment. You're not training for anything, you're not trying to race-walk, you're just taking a long stroll with a good friend and enjoying the day.
Add your own favorites to these lists. Whatever you choose to do with your "me" time, make it relaxing and restorative.

"If you don't feel like it works for you, try something else," Moore says. "'Shoulds' are the enemy of relaxation. Don't think about what you should do, but about what makes you thrive."



CD6282161 Posts: 698
6/19/14 3:42 A

Reply
I know I have to be more aware of this....



emoticon

VALLEYSINGLE's Photo VALLEYSINGLE Posts: 820
6/16/14 10:08 A

My SparkPage
Send Private Message
Reply
FIBRONOMICS
by Dr Pelligrino

“Years ago I came up with four rules to maintain favorable posture and body mechanics with fibromyalgia. Fibronomics is defined as the art of properly manipulating our fibromyalgia body in the environment to enable completion of an activity with minimal pain. Fibronomics can be applied to everything we do in life, no matter how simple it is. There are four easy rules of fibronomics, and once they are learned and applied, our bodies will automatically follow them.

Rule #1: Arms stay home.

Anytime the arms are away from the body, the trapezial, scapular, shoulder and upper back muscles all go into sustained contractions which can result in increased pain, even after only a few seconds of the offending activity.

The favorite position for our arms is at the sides and below the shoulders with the elbows touching our sides and bent at a 90 degree angle. We should try to maintain this position to the point where we move our whole body, not just our arms to confront each specific task. Arms stay home (with the rest of our body), and do not reach away.

Rule #2: Unload the back.

Multiple muscles must be balanced to maintain proper alignment of the low back and pelvic areas. If anything causes a shift in this alignment, the mechanical imbalance and misalignment can result in pain. Any activity that increases the load on the back such as bending forward, prolonged standing, bending at the waist to pick up an object or arching the back should be avoided to help lessen the chance of unwanted pain.

Rule #3: Support always welcome.

Whenever possible, take advantage of existing structures in our environment to relieve some of the force on our body. Examples of common support structures:
• Arms: Armrest, rest arms on head, lap or body, cross arms, hold one arm with other arm, pockets, muffs and slings.
• Back: Chair, wall, foot stool, brace, belt.
• Body: Stair rails, pillows, cushions, furniture.

Rule #4: Be naturally shifty.

This rule emphasizes maintaining natural or neutral body and joint positions, but at the same time, periodically moving and shifting the muscles. Keeping our muscles moving is one way to avoid the painful tightening and spasms that can occur when we are in one position for too long. We must learn to automatically alternate between various positions such as sitting, standing and walking to both relax and stretch the muscles regularly.”

Kathy


 current weight: 194.0 
225
200
175
150
125
CD6282161 Posts: 698
5/31/14 5:37 P

Reply
Hi, everyone!

I found a web site that I can actually follow:

http://www.living-smarter-with-fibromyalgi
a.com/

Has some great tips, and is all-inclusive. Check it out!

emoticon

Edited by: CD6282161 at: 5/31/2014 (17:38)
CD6282161 Posts: 698
5/15/14 8:02 P

Reply
I had CFS. I could barely walk the few steps to the bathroom.

Understand how inflammation could be the cause of this, as it contributes to so many other auto-immune disorders.

An alkaline diet helps with symptoms! Don't know if it will help for everyone, and is hard to stick to...but in my case, it works.

emoticon

CD1322168 Posts: 26,911
5/15/14 10:38 A

Send Private Message
Reply
Possible Clues to Chronic Fatigue Syndrome
Inflammation may play a role, small study suggests


WebMD News from HealthDay
Inflammation may play a role, small study
By Alan Mozes


FRIDAY, May 2, 2014 (HealthDay News) -- Seeking better insight into chronic fatigue syndrome, a new brain scan investigation has pinpointed what could be the first evidence of a connection between nerve cell inflammation and the onset of this debilitating and somewhat mysterious illness, researchers say.

The finding stems from a small PET scan study, led by Yasuhito Nakatomi of the RIKEN Center for Life Science Technologies in Hyogo, Japan. The study involved just nine patients with chronic fatigue syndrome and 10 healthy participants.

However, the investigators believe that their initial results are the first to show that neuro-inflammation is a distinct feature of chronic fatigue syndrome. This inflammation affects specific areas of the brain that are commonly linked with the kind of fatigue, pain, depression, and thought-process difficulties long associated with the syndrome, the researchers noted.

"While the results will need to be confirmed in larger studies, it is a very exciting finding," said Suzanne Vernon, scientific director of the CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) Association of America. She was not involved with the new study.


"This is the first time images of this type of brain inflammation have been seen in chronic fatigue syndrome," she added, "and provides the evidence of the seriousness and debilitating nature of this disease."

The findings appeared online recently in advance of print publication in the Journal of Nuclear Medicine.

The root cause of chronic fatigue syndrome is the subject of much debate. While some health experts believe it is bacteria driven, others think it's most probably brought on by a virus.

The syndrome -- which can take hold without warning -- is typically characterized by extreme exhaustion, muscle and joint pain, sleep difficulties and thinking problems. The result is often an inability to perform even simple everyday tasks.

In the new study, all the participants first filled out questionnaires that asked them to indicate to what degree they were experiencing any telltale signs of chronic fatigue syndrome.

Brain imaging was then conducted in key areas of the brain, including the cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pons regions.

All signs of neuro-inflammation were then stacked up against chronic fatigue syndrome symptoms.

The result? While nerve cell inflammation was found to be "widespread" throughout the brains of chronic fatigue syndrome patients, no such inflammation was observed among the healthy study participants.

Vernon said the study also found a graded relationship between levels of inflammation and the severity of disease.

"The higher the inflammation, the more severe the patients' symptoms," she noted.

The study authors further found that neuro-inflammation spiked in patterns that directly correlated with chronic fatigue syndrome symptoms, ratcheting up in brain regions that are central to thought-processes typically impaired by the condition.


CD1322168 Posts: 26,911
5/6/14 10:26 A

Send Private Message
Reply
Yes...and that is why pacing is so important to us......we have limited spoons....so we must choose carefully how to spend our days.

CD6282161 Posts: 698
5/5/14 10:59 P

Reply
I love "spoon theory!" Makes so much sense, if anyone is willing to listen...


emoticon

CD1322168 Posts: 26,911
5/4/14 9:54 A

Send Private Message
Reply
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com


My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

- See more at: http://www.butyoudontlooksick.com/wpress/a
rticles/written-by-christine/the-spoon
-theory/#sthash.aBRaGZlQ.dpuf

CD1322168 Posts: 26,911
4/19/14 5:38 P

Send Private Message
Reply
Happy Easter Sylvia...I sent you a spark mail.

CD6282161 Posts: 698
4/19/14 4:29 P

Reply
Wishin' I had a family with which to do these things... Great tips!

Happy Easter, Everyone! emoticon emoticon emoticon emoticon emoticon

CD1322168 Posts: 26,911
4/19/14 4:01 P

Send Private Message
Reply

How to handle the holidays(were based on Christmas I believe but we can adapt a lot for other holidays)


Examine your expectations.

When you think of the holidays, what picture comes to mind? Does it resemble a scene from a Normal Rockwell print? If so, it’s time for a reality check. Few holidays ever live up to the idyllic images in those pictures. It’s time to accept the fact that you can’t do everything you once did. Are the holidays really about elaborate decorations and frenetic activity; or are they about expressing your love and appreciation for family and friends? Now is the time to set new expectations based on what is most important to you.

Refuse to feel guilty.
Guilt develops when you fail to live up to your own expectations, or you feel like you haven’t lived up to the expectations of others. The fact is you have a very real physical illness that limits what you can do. It’s time to stop blaming yourself because you can’t do everything you used to do or because you can’t do everything you think your family expects you to do. Make the decision right now that you refuse to accept any guilt feelings. Remember that the holidays are not about how much you do, but are about expressing your love for your family.

Communicate, communicate, communicate.
Communicating clearly with your family ahead of time is key to a happy holiday season. Sit down with your family and explain that you want everyone to enjoy the holidays, but you have some physical limitations. Decide together what aspects of the holidays are most important to all of you and enlist their help with the things that you can’t do. Some family members may not understand at first, but don’t allow yourself to be pushed into doing more than you can handle. Try to remain calm but be firm.

Prioritize your holiday activities.
Every family has its own holiday traditions. List all of your family’s possible holiday activities then ask each person which activity they consider the most important (i.e., decorations, big home-cooked meal, baking cookies, visiting with relatives, etc.). Number them in order of importance. Focus your energy on the things that are most important. For each item on your list, decide: if there is an easier alternative, if someone else can take the responsibility, or if it’s not really necessary.

Plan ahead.
A big part of holiday stress comes from the last-minute rush to get everything done. Start planning as early as possible. Make a list of everything you need to do and figure out the easiest and best way to accomplish each task. Work on a portion of your list each week. Know that things will go wrong and you’ll probably have some days you don’t feel well enough to do anything. Be sure to allow extra time so those bad days don’t throw you completely off schedule. By not waiting until the last minute to do everything, hopefully you’ll have enough energy left to enjoy your holidays.

Share the workload.
You don’t have to do everything yourself. Don’t be a martyr. Ask each family member to take responsibility for part of the preparations. If you can afford it, hire someone to help you clean the house. Pay a student to address cards or help you bake. If everyone is coming to your house for dinner, ask each person to bring a side dish or dessert – then you can just prepare the main dish. Don’t be afraid to ask for help.

Simplify.
For every item on your “to do” list, ask yourself these questions: Does this really need to be done? Is there an easier way to do it? Can I get by with doing less? (e.g., instead of baking 12 kinds of cookies, make your family’s three favorites; put up fewer decorations or decorate fewer parts of the house.)

Find alternatives.
Try to think outside the box. For every holiday task, try to think of an alternative that would be easier and less stressful for you. Instead of fighting crowds at the mall, do your shopping online or from catalogs. Rather than cooking a big meal, consider having your holiday dinner at a restaurant. If everyone usually comes to your house, ask another family member to host the festivities this year. Be creative and make things easier on yourself.

Schedule time to take care of yourself.
This may be the most important step of all. It’s so easy to get caught up in everything that needs to be done and making sure everyone else is taken care of that you forget to take care of yourself. Make sure you’re taking time to eat healthy foods and keep up with your exercise program. And be sure to schedule time to do whatever is most relaxing and refreshing for you, whether that is soaking in a warm bubble bath, getting a massage or curling up in bed with a good book. Take time to pamper yourself.

Enjoy!
Remember that the holidays are to be enjoyed. You’ve done the best you can do, so it’s time to let go of the “shoulda, woulda, coulda” and just have fun. Happy Holidays!


LOVETOLAUGH56's Photo LOVETOLAUGH56 Posts: 1,927
4/18/14 9:23 P

My SparkPage
Send Private Message
Reply
emoticon emoticon
Some really good ways to simplify and do and think less, love it.
Karen

Karen, Florida, USA, Central time
Phil 4:13 "I can do everything through Him who gives me strength"



CD1322168 Posts: 26,911
4/18/14 3:55 P

Send Private Message
Reply
You are most welcome......

CD6282161 Posts: 698
4/18/14 3:49 P

Reply
Thanks, Sarah! Good topics.

emoticon

CD1322168 Posts: 26,911
4/18/14 3:38 P

Send Private Message
Reply
Declutter your Mind:


1. Breathe. So simple, and yet so effective. Take a few deep breaths, and then for a few minutes, just focus on your breathing. Concentrate on your breathing as it comes into your body, and then as it goes out. It has a calming effect, especially if you continue to return your focus to your breath when your mind strays. It also allows other thoughts to just float away.

2. Write it down. If you have a bunch of things on your mind, it helps to get them on paper and off your mind. This keeps your head from being filled with everything you need to do and remember.

3. Identify the essential Identify what is most important in your life, and what’s most important for you to focus on right now. Make a short list for each of these things.

4. Eliminate. Now that you’ve identified the essential, you can identify what’s not essential. What things in your life are not truly necessary or important to you? What are you thinking about right now that’s not on your short list? By eliminating as many of these things as possible, you can get a bunch of junk off your mind.

5. Journal. Similar to “write it down” above, but with a little more depth. Journaling (whether it’s in a paper journal or online doesn’t matter) helps you explore different areas of your life that you don’t think about much. And this exploration might allow you to find some things on your mind that you didn’t realize were there, some things that can be eliminated or pursued. And just getting these thoughts into some kind of a journal is a way of getting them out of your mind as well.

6. Rethink your sleep. Sometimes we aren’t getting enough sleep, or our sleeping patterns aren’t ideal. I’m not saying that you should change your sleeping patterns, but sometimes it can do wonders. And if you don’t give it some thought, you won’t realize how much your sleep (or lack thereof) is affecting you.

7. Take a walk. Getting outside and doing some kind of physical activity is a great way to get stuff off your mind. I like to run or do yardwork, but whatever you do doesn’t matter. Spending some physical energy clears the mind.

8. Watch less TV. For me, television doesn’t relax me, although it might seem that vegging in front of the TV is good for relaxation. TV fills your head with noise, without the redeeming qualities of music or reading or good conversation. Watch less TV, and you’ll notice your mind begin to quieten.

9. Get in touch with nature. Similar to “take a walk” above, but without the bustle of activity. I like to go somewhere with water … the ocean, a river, a lake, even just a man-made fountain if nothing else is available. Or watching rain does the trick for me too. Somehow this can be calming and focusing at the same time.

10. Do less. Take your to-do list and cross off half the things on it. Just pick a few things to get done today, and focus on those. Let the rest go away. If you do less, you’ll have less on your mind.

11. Go slower. Seems kinda weird, I know, but walking and talking and working and driving slower can make a very big difference. It’s kind of like you’re saying, “I’m not willing to rush through life, no matter what artificial time demands others are putting on me. I want to take it at my pace.” And as a result, your mind is less harried as well.

12. Let go. Worrying about something? Angry about somebody? Frustrated? Harboring a grudge? While these are all natural emotions and thoughts, none of them are really necessary. See if you can let go of them. More difficult than it sounds, I know, but it’s worth the effort.

13. Declutter your surroundings. I’ve mentioned this before, but decluttering my desk or my home have a way of calming me. Having a lot of stuff around you is just visual clutter — it occupies part of your mind, even if you don’t realize it.

14. Single-task. Multi-tasking, for the most part, is a good way to fill your mind with a lot of activity without a lot of productivity or happiness as a result. Instead, try to single-task — just focus on one task at a time. Clear away everything else, until you’re done with that task. Then focus on the next task, and so on.

15. Get a load off. Sometimes it can make a huge difference to unload our troubles on another human being. If you have a significant other or a best friend or a close family member or coworker … unload your thoughts on them. And listen to them, to return the favor. Sure, it’s just talk … but it can make a huge difference to your mental sanity.


CD1322168 Posts: 26,911
4/18/14 3:09 P

Send Private Message
Reply



But what ARE flares? And, what brings them on?
First of all, it’s F-L-A-R-E and not “flair” (the latter describes something much more fun).

A flare of symptoms (a fibro flare, specifically), is an accumulation or a cascade effect of aches, pains, spasms, imbalances, and overall systemic disturbances. A flare is an unplanned hurricane of symptoms. Of course, some flares are more like thundershowers than hurricanes, but the fact that they “rain” on our plans is universal.

When I see a client who mentions a recent flare, I ask her to go along with me on a symptom archeological dig. We determine when the accumulation of symptoms first occurred. We speculate on what was going on at the time. I often ask questions that clients feel are completely unrelated, but I ask for patience. You see, there are many not-so-obvious factors that can contribute to a flare.

Here are a few common causes that come to mind:
A recent fall, stumble, or startle to the body (even minor events)

A recent injury whether major or minor

Recent changes in prescribed medications

Recent changes in over-the-counter medications

Weather-related changes (yes, some studies state this is hooey while others state it as fact. I don’t care. I feel physical changes with barometric weather changes as do my clients, relatives, and fibro friends)

Recent doctor’s visits (including MDs, physical therapists, dentists, etc.!)

Recent travel (air, bus, train, car, etc.)

A recent change in sleep patterns (too little, too much, changed location/pillows, etc.)

Other physical changes


Here are some that may take a bit of increased awareness:
Recent changes/additions in hormone medications, creams, supplements, etc.

Eating foods that don’t “agree” with you and your nutrition type

Recent changes in diet/nutrition

Lack of fitness routines (a sedentary lifestyle leaves the body vulnerable to muscle pulls, pinched nerves, spinal alignment issues, etc.)

Recent cold, flu, or infections especially when connected to taking a course of antibiotics

A recent upsetting “discussion” or disagreement with a close family member, co-worker, or friend

A recent personal discovery or revelation that feels overwhelming, saddening, or devastating, (i.e. finding out that your child who planned to attend a local college, now plans to attend school out of state, or, obviously, something worse)

Any negative, unhealthy, cyclical, critical, judgmental thoughts about yourself and others

Recent external toxic exposures (to pesticides, carpet cleaners, air fresheners, candles, scented laundry products, perfumed items, hair and skin care products, remodeling supplies [i.e., paint, varnish, adhesives, etc.]), etc.

Recent internal toxic exposures to chemicals found in packaged and processed foods, drinks, pharmaceuticals, over the counter medications, dental work, immunizations, and more


Additionally, here are chronic versions of issues that can build like tinder just waiting to flare:
Chronic generalized worries, stress, anxiety

Chronic relationship issues and worries

Chronic financial issues and worries

Chronic concerns and fears of future health and/or disability issues

Any fear or worry that escalates into a chronic state


Anything that has the potential to worsen symptoms,
can provide the catalyst to a fibromyalgia flare.

Here’s a more detailed illustration of how a flare can happen.

Faye is a 43 year old woman with fibromyalgia. Faye has recently changed her position at work to one that requires less travel. She was no longer able to “handle” the constant shuffling from rental car companies to airports to hotels.

Faye is frustrated by her physical limitations and made the job decision by default rather than by choice. Thinking about these frustrations, she packs up her office late on a Friday night after everyone has gone home so she can be alone. Her new job is on a lower floor of her building – not to mention at a lower pay. She’ll have to move into the new office on Monday morning. She puts her few personal possessions into a small box and only packs what fits inside. She carries it under one arm as she hurries to the elevator.

Across her office parking lot, she tiptoes through seeping mud-filled puddles and regrets leaving her large umbrella in the office. When she gets to her car, she avoids putting the box down onto the wet blacktop to locate her keys, and instead balances it along with her purse and a book bag. She successfully fishes her keys from her purse and while swinging her car door open, she loses her grip on everything. Gritting her teeth, she watches the box, its contents, her purse, and her books fall onto the filthy, soaked ground.

By the time she’s collected her things and climbed into her car, she’s soaking wet and in pain. Her anger and frustrations fuel her thoughts all the way home. She walks into her small apartment and is too upset to do anything but turn on the TV for distraction. The achiness in her back, neck, and shoulders increases. Her muscles stiffen. Her knees, hips and wrists are sore from crawling around on the parking lot. She knows that a flare is imminent. She mutters to herself, “Oh, here it comes … and this one’s gonna be a doozy.”

Can you relate?

Of course, for illustration purposes, this story combines multiple “flare factors.” Faye had definite physical injuries and potential impairments of muscles, joints, and surface abrasions. She was probably achy already from the rain. On the emotional side of things, her fears and worries included money, career, job security, embarrassment, anxiety over loss of physical mobility, self-identity changes, isolation, relationship issues, and more.

While this may be an exaggerated depiction, remember this –


A fibro flare is never “caused” by just one thing.

A set of circumstances throws a flare into action.

So, the next time that you’re in a flare, or if you think back to a recent flare, go beyond the obvious. Besides the injury, think about what was going on in your thoughts at the time. Were you frustrated, angry, or upset?

Understanding the connection between all of these factors gives YOU the power to better predict as well as manage your flares.

What combination of flare factors affects you the most?
_______________

CD1322168 Posts: 26,911
4/18/14 3:08 P

Send Private Message
Reply


Anything we find that we feel would be helpful to our sisters....we can post here.


Page: 1 of (1)  

Report Innappropriate Post

Other Fibro Sisters Fibromyalgia facts & Info Posts

Topics:
Last Post:



Thread URL: https://sparkpittsburgh.sparkpeople.com/myspark/team_messageboard_thread.asp?board=28307x62837x57559812

Review our Community Guidelines