My Tired is Tired!

It has been very difficult lately to get stuff done. I have to completely pace myself and take things one step at a time. Definitely, day by day. No matter how much I rest I get it seems as if it is never enough. On Monday, all I can think about is getting through the week and it just seems to feel extremely long and like the days just drag when I’m at work. Last January, my doctor disabled me but I decided by August that I needed to go back to work. I went back in late November and now I feel as if I can’t go one another week. Do any of you feel this way? I wonder if I’m the only one with this issue.

I have gone to school to darn long to just give up. I feel like I would let down my kids and the rest of my family. Lupus and fibromyalgia alone are enough to make someone feel extremely and utterly unable to everyday tasks, so just imagine having 6 invisible and chronic illnesses. Don’t get me wrong that there are days I can actually get stuff done just that the next day I kinda pay for it. I went to Disneyland twice this month, so that’s great but keep in mind i did 4 rides the most and  came home. I wish and pray that all my fellow spoonies are doing fantastic today, tomorrow and everyday!

XOXO

10 Causes of Fibromyalgia Flares

10 Causes of Fibromyalgia Flares
Karen Lee Richards Health Guide March 21, 2012
  • fibromyalgia flare (or flare-up) is a temporary increase in the number and/or intensity of symptoms.  Worsening pain and fatigue are generally the first two symptoms noticed in a fibro-flare.  But other symtpoms like poor sleep, increased cognitive dysfunction and digestive disturbances are often experienced as well.

    Some flares only last for a day or two but others may continue for several weeks or even months.  It’s those long flares that are the hardest to deal with because it feels like they will never end.  When you start to feel discouraged in the midst of a long flare, it’s important to remind yourself that flares are temporary.  They will eventually begin to subside.
    The best way to prevent FM flares is to identify what causes them and when possible, try to avoid the circumstances that trigger them.  Keep in mind that a flare may not occur for up to 48 hours after the event that triggered it.

    Causes of Fibromyalgia Flares

    In my experience, 10 of the most common causes for fibromyalgia flares are:

    1.  Weather changes

    Possibly the most common cause of short-term fibro-flares can be attributed to changes in the weather.  Whenever the barometric pressure changes and a new front passes through, many people with FM experience an increase in their symptoms – particularly in their pain level.  Fortunately, these flares usually only last for a day or two.

    2.  Over-exertion

    Any time we push ourselves too far physically, we’re in danger of triggering a flare.  On those rare days when we feel pretty good, it’s so hard not to try to catch up with all of the chores and activities we’ve been unable to do for the past month or two.  But overdoing, even when you feel good, will usually come back and bite you in the form of a fibro-flare.  It’s better to increase your activity level gradually so that hopefully you’ll have more good days with fewer setbacks.

    3.  Stress

    Stress may be the granddaddy of fibro-flare triggers.  We’re always hearing how prolonged stress negatively affects our health and can lead to heart attacks and strokes.  What we don’t always realize is that stress can have a significant impact on fibromyalgia symptoms as well.

    Stress can be a particularly insidious culprit when it comes to fibro-flare triggers because it often sneaks up on us.  Our responsibilities gradually increase, the economy gets worse, our child gets sick – without consciously thinking about it our stress levels have gone through the roof.  Then one day we find ourselves in the midst of a major flare and wonder what caused it.  It’s been my experience that stress-related flares often last the longest because they can be the most difficult to identify and then find ways by which we can manage the stress.

    4.  Illness or injury

    Just as an illness or injury often triggers the onset of fibromyalgia, another illness or injury can trigger a flare of FM symptoms.  Even something as simple as the common cold can result in a fibro-flare.

    5.  Hormonal changes

    A number of women report experiencing FM flares related to their menstrual cycles and menopause.  Whether or not hormone replacement therapy is appropriate or even would be helpful in these cases is something that each individual would have to discuss with her doctor.

  • 6.  Temperature changes
    Many people with FM find that they are extremely sensitive to cold or heat or both.  Being exposed to those uncomfortable temperatures, even for relatively short periods of time, can sometimes trigger a flare.

    7.  Lack of sleep or changes in sleep routine

    Getting quality, restful, restorative sleep is an ongoing challenge for people with fibromyalgia.  Whenever that sleep is disrupted or there are changes to an individual’s normal sleep patterns – particularly over a period of time – a fibro-flare may not be far behind.  It’s important to find a sleep routine that works for you and stick to it as closely as you can.

    8.  Treatment changes

    While changes to your medications or other treatment protocols are intended to bring about an improvement in your symptoms, sometimes those changes can result in a flare of your symptoms.  It can be tricky to determine whether the flare was actually caused by the change itself or was coincidental.  It may take a period of trial and error, working with your doctor, to figure out whether the treatment change is to blame or if some other factor triggered the flare.

    9.  Traveling

    Traveling is seldom easy for someone with fibromyalgia and even the best trip may be followed by a fibro-flare.  One reason this happens I suspect is because travel so often involves one or more other common flare triggers such as weather changes, temperature changes, stress and the disruption of sleep routines.  Try to plan plenty of rest time during your trip as well as allowing a day before you leave and at least a day or two after you return to rest.  While this may not completely prevent a flare, it may help minimize its severity.

    10. Individual sensitivities

    Often people with fibromyalgia have a number of sensitivities such as allergies or sensitivity to light, noise and/or smells.  Exposure to the things they are sensitive to – like bright lights or strong perfumes – may trigger a fibro-flare.

    Preventing Fibromyalgia Flares

    Although it’s not possible to prevent all fibro-flares, identifying what causes most of your flares and taking steps to try to prevent those triggers can help reduce the number and intensity of flares significantly.

    Journaling or keeping a log is an excellent way of identifying possible triggers because you can go back and compare what you did prior to a current flare with other previous flares.  Just take a few minutes each day to jot down your activities for the day, any new medications or other therapies started, changes to your diet, weather or temperature changes, how and when you slept – anything that could help you pinpoint changes or themes that could account for your flares.

– See more at: http://www.healthcentral.com/chronic-pain/c/5949/151398/fibromyalgia/?ap=2006#sthash.30kDNXLB.dpuf

When times get tough…

I have realized that I love giving people advice and love to be supportive to all my friends and family no matter what the situation may be. I try to be as encouraging to all my Lupus Family that I love very much because I know it can get very tough, but the funny thing is that I don’t take my own advice…

I have been forced to drop my two classes from Grad school this semester and that has been extremely tough on my confidence as a student, because I am always striving to succeed, therefore now feeling as a failure, ughh! I know that I am capable of so much but my Lupus and Fibromyalgia have really kicked my ass. I have felt so sick and fatigued that I can barely get up a lot of the times and it sucks to be so unproductive. I am grateful that I am not as ill as other of my fellow Lupies and I am very considerate of that, but when you have lived life to the fullest trying to juggle it all with work, school, and a family but all of a sudden 90% of that comes to  crashing haul its extremely difficult. I am not Giving Up and thats for darn sure, but I am afraid of not succeeding in the future. I am afraid that my brain fog stops taking over my brain and lets me continue to be a productive individual.

Don’t get me wrong I am a very optimistic person, but I have to tell myself “Cindy, you got this and you can do it”. Its a matter of believing it still and keep pushing!!! So, for all my readers and family out there reading this and having some similar feelings all I want to tell you is that we Have to Keep Pushing, we Can Do It!!!

Love Ya:)

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Pain Control

Since I have been trying different ways to cope with the pain I thought I would share this article I found on www.lfa.org. Hope it can help somebody!

If you are like most people with lupus, you have experienced pain at some time, especially in your joints and muscles, or in the form of headaches. However, the types of pain associated with lupus usually go away when the inflammation and disease activity are brought under control.

Chronic and often severe muscle pain is the main symptom of fibromyalgia, a disease that affects about 30 percent of people with lupus. Although fibromyalgia is still not well understood, its diagnosis is based on widespread and often extreme pain and sensitivity at 18 “tender points.” These points occur on both sides of the body at the same time, in the areas of the neck, shoulders, chest, hips, knees, and elbows.

A variety of medicines can help ease pain caused by lupus and fibromyalgia. More information about medicines used to treat pain is available in the LFA publication, “Treating Lupus.” Pain medicines are helpful, and in many instances necessary. But, because there are always risks and side effects, it is good to know some other approaches to pain relief.

Heat and/or cold applications are often recommended for different kinds of joint and muscle pain. Moist heat soothes painful joints much better than dry heat, so soaking in a hot tub, sauna, or whirlpool, using a moist heated towel, or taking a hot shower can be helpful. Ice or cold applications are advisable only for strained or twisted muscles or injuries during the first 36 hours after the injury.

 Behavioral techniques, such as progressive relaxation, meditation, self-hypnosis, focused breathing, low-impact yoga, Tai Chi, and guided imagery also can be effective tools for pain management. By directing your mind’s attention away from the experience of pain, these methods help to relieve the stress and tension that can actually make pain worse. Safe and easy to do at home, these techniques have the added benefit of allowing you to take control of the pain, rather than just reacting to it and suffering with it.

 Alternative and otherwise non-conventional health and healing practices also are used for pain relief and may be effective for you. Among these techniques are acupuncture and acupressure, biofeedback, and chiropractic adjustments. It is important that anyone with lupus who is considering complementary or alternative treatments for pain or other symptoms first discuss such treatments with his or her physician.

10 Tips For Navigating Your Way Through Brain Fog

I have dealt with a lot of brain fog issues and found this article helpful, so here it is for the rest of you to read!

10 Tips For Navigating Your Way Through Brain Fog

 
There are several chronic ailments that affect cognitive function. Also, certain medications can cause forgetfulness or confusion. The non-medical term for this is brain fog, and it seems pretty apt. I like to compare it to trying to run while knee-deep in mud.

I’ve been dealing with varying amounts of brain fog for the past 14 years due to fibromyalgia, occasional bouts of low glucose levels, and neurological effects of Sjogren’s syndrome. I figure I’ve lost probably 15 points off my IQ. While I haven’t been able to rid myself of the fog, I have developed tricks to cope with it and minimize its effects. Here are my top 10:

1. There’s an app (or pocket calendar) for that.

With smart phones and various other portable electronic devices, you have many options for storing appointments, phone numbers and keeping to-do lists. Some devices let you record memos, handy when you think of something important when you’re away from home. If you’re like me, though, and have trouble learning how to use electronics, you can always go old school. I keep a pocket calendar and a notepad and pen in my purse at all times as well as next to every phone in the house (yes, I still have plug-in phones because I can never find a cordless when it rings). Whenever I make a follow-up appointment at the doctor’s office, I check my purse calendar to make sure that date isn’t taken and then write the appointment down immediately. The calendar has a section for phone numbers and addresses. When I need to remember more than three things (that seems to be the magic number where I max out my brain), I make a list on the notepad. I also keep typewritten lists in my purse of all my doctors and medications as well as a small cheat sheet for computing tips.

2. The “fibromyalgia” purse (or wallet).

It is said that one shouldn’t plan to fail, but with cognitive dysfunction, one should plan to forget, just in case. My tendency to space out important things like my driver’s license and credit cards without noticing led me to acquire what I have nicknamed the “fibromyalgia” purse. It is medium-sized but has pockets for all the items I need to keep track of. Everything I carry has a designated space in the purse so I can find them quickly and can tell immediately if I am missing anything. A few years ago, I accidentally left one of my credit cards on a checkout counter and left the store. But I looked in my purse once in my car and saw the empty slot where the card was supposed to go, and I knew then what I had done. I got back to the store before anyone had a chance to run off with my card. Another necessary feature of a “fibromyalgia” purse is a long shoulder strap that allows me to carry the purse crosswise on my body, wearing it like I would another article of clothing. This means I won’t have to set the purse down every time I need to remove something from it and lessens the chance of me losing it.

3. Use it or lose it.

Your brain needs daily exercise just like your body. Fortunately, this is fairly easy to accomplish. Do puzzles that appeal to you, like jumbles, Sudoku or crossword. Play board games or watch TV game shows. It doesn’t matter if you get the answer before the other contestants do. It doesn’t even matter if you get the right answer. What counts is the act of trying to figure it out. If you can handle it, read daily too.

4. Take advantage of your best time of day.

You may notice that mental tasks are easier during certain hours, so if you can, do your most important activities then. I am slow to wake and know not to hop right out of bed and try to drive somewhere because I could get lost then. It is also unwise for me to attempt something mentally taxing after supper. Ideally, I try to be productive beginning approximately three hours into my day. That is when errands, phone calls and social activity work best for me.

5. Eliminate distractions.

When you have cognitive dysfunction, there are certain times when multi-tasking could be dangerous. I have learned not to engage in conversation while cooking because once I try to pay attention on what is being said, I will completely forget I have something else going on until the smoke alarm sounds. If you are studying something you will need to remember, you might want to make sure the television, computer and any source of music are all switched off until you are done. While you are driving, do not do ANYTHING else. Better yet, if you are traveling with another person, have them drive so you might still be able to chat safely.

6. Stressing out about brain fog leads to MORE brain fog.

Ever panicked during an exam and forgotten all the information you spent hours studying? Strong emotion can make brain fog worse. The next time you go completely blank, instead of becoming angry at yourself or freaking out, take a deep breath and wait a moment. You may find you still have the knowledge and be able to access it when you are calmer. If what you wanted to do or say or remember is truly gone, it is generally not worthwhile to beat yourself up over it. Keeping a sense of perspective and a sense of humor helps.

7. Out of sight, out of mind.

Sometimes being too tidy works against you. I find that when I put items away that I’m going to need later, I forget about them completely. When I have something to mail, I put it right on top of my purse to remind me to take it with me the next time I leave the house. Paperwork that needs to go in the basement at some point I put in plain view on the corner of the kitchen countertop nearest the top of the staircase. And items associated with a particular project on the computer get stacked right in front of the monitor, probably to the annoyance of my husband, but it gives me a visual gauge of how much time I need to set aside to clear the pile. If you are on a lot of medications and/or nutritional supplements, sort them into pill minders and put the pill minder someplace near where you will likely be at the time you need to take them. For instance, my morning medications are on a shelf on the headboard right next to my pillow so I will remember to take them as soon as I get out of bed. Leave sticky notes on your bathroom mirror if that helps.

8. Keep it simple to feel less stupid.

When running errands, do them in an order that is logical to you, such as beginning with whatever is closest to your home and working your way outward so you don’t confuse yourself by backtracking. Type up a permanent grocery list on the computer of what you use regularly, print out copies and check off items as you run out of them rather than racking your brains on shopping day figuring out what you need. Try making one-dish recipes so you don’t have to keep track of multiple appliances at once. Don’t make anything more complicated than it needs to be. If there is an important project that absolutely must get done that day, tackle it first so you don’t get sidetracked by any time-wasting frivolous activities. The easier you make it to succeed, the better your sense of accomplishment will be and the less frustrating your brain fog will be.

9. Routine may be boring, but it’s easier to remember.

Become a creature of habit. If you do the same thing at the same time each day, it will be easier to recognize when you’ve accidentally left something out. I used to forget to eat meals until I started doing them by the clock. At bedtime, calmly envision your plans for the following day in chronological order, including what you intend to wear and eat and accomplish. The repetitiveness of make a mental list of even the most ordinary activities could very well lull you to sleep, which is the general idea. I find that when I have already decided the night before what my meals and attire will be, it frees up my brain a bit for other things.

10. Garbage leads to garble.

Take the best physical care of yourself that you can. Fatigue can exacerbate brain fog, so develop good sleep habits and seek medical advice in the case of persistent insomnia. Eat small, frequent meals containing lean protein and fresh fruits and veggies (unless your doctor instructs otherwise) to keep your glucose and energy levels stable. I find drinking green tea helpful, and drinking plenty of water generally doesn’t hurt. If you are capable of exercise in any form, do so regularly. Also engage in regular periods of relaxation. Balancing activity with relaxation will make you feel less overwhelmed in general, which enhances clearer thinking.

Finally, make sure you haven’t overlooked a concurrent untreated medical condition that could be contributing to your brain fog. Have your thyroid and glucose levels checked periodically. If you experience a sudden dramatic worsening of cognitive dysfunction, particularly if it is accompanied by severe headache, numbness or loss of motor skills, head straight for the emergency room.

Dealing with a brain that no longer works quite right is a challenge. But I do my best to make sure it doesn’t ruin my life.

 Article written by staff writer, Karen Brauer

 Karen Brauer is a happily married woman in her forties living in a little house on the prairie. Her passions include: photography; classic and some modern literature; classic, foreign and some modern film; and music of all kinds. Her blog is called “browser life”: http://browserlife.blogspot.com/

www.butyoudontlooksick.com