Drive Me Crazy


I hate driving! (Mind you, I also hate being a passenger with some people, too…but that’s another story!) Even in my cute little car. carDriving can be a major stressor. And we are all very aware that stress is a common trigger of flare ups. As well as being stressful, driving requires you to sit and move in ways that can make your bits hurt more.

Trains, buses and taxis may be options, but public transportation comes with its own stresses and is not always available or affordable. Many people with fibromyalgia cannot walk or bike very far without pain, and getting a ride is not always easy. As a result of all this, you may not be able to avoid driving, especially if you work. But, perhaps, there are a few things you can do to better cope with stressful driving situations.

The Risks of Driving with Fibromyalgia

  • Increased pain – Sitting in the same position for prolonged periods of time can cause pain and discomfort. It doesn’t allow for proper blood circulation, and sitting in one spot can pinch nerves in the legs and back, causing more pain.
  • Overstimulation – Any type of overstimulation that comes about from speeding cars, the noise, heavy traffic, and other visual and auditory sensory input can be added stress for us.
  • Fibro fog – Fibro fog, or cognitive troubles associated with fibromyalgia, can make it difficult for you to pay attention to the road. This can make being behind the wheel dangerous not only for you, but other drivers.

Things You Can Do to Help

If you need to drive, you can make some adjustments and improve your experience and make for a safer driving experience.

  • Make sure you get a good night’s sleep – It is imperative to sleep well (or as well as can be expected) the night before you are driving, so that you are not exhausted the next day. This will help prevent grogginess, which can cause a safety issue for you and others on the road. If you find you are extremely fatigued, see if you can get another person to drive for you. Check with your doctor about getting medication to help you sleep or try melatonin for a better night’s rest.
  • Plan your route – Figure out where you’re going and plan your route ahead of time. You will want to find the route that is least likely to have traffic or obstacles like construction. If you have GPS, use it, as it removes some of the stress of having to remember where you’re going. Additionally, there are apps for your phone that can tell you how traffic looks on the main highways and interstates so you can avoid traffic jams.
  • Make sure you’re comfortable – Make sure your seat is as comfortable as possible and that your posture is correct while driving – aim to be sitting up straight the same way you would at a desk. You may have to adjust your seat and mirrors to achieve this. If you’re still uncomfortable after making adjustments, try out a different headrest, or use a cushion or back support.
  • Take breaks – If you are driving for an extended period of time, take regular breaks to get out and stretch, and to rest your eyes and brain for a little while.
  • Consider alternatives – If you’re finding that driving causes you too much pain, or you become too disoriented while behind the wheel, look for alternative transport options. You may want to organize a carpool to work, work out how often you can afford to taxi, or, if you don’t have too far to go, consider a mobility scooter.

If you’re not feeling up to driving, DON’T. Your safety, and that of everyone else on the road, is far more important than arriving at your destination. REALLY!

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Pain or No Brain?

Ages and ages ago (except it doesn’t feel that long ago – doesn’t time fly when you’re in a fibro fog!), I (with my doctor’s advice) weaned myself off Lyrica to see if we could find a better way to deal with this condition. If you followed the posts, you’ll remember that I ended up at Step 1 again and back on it…almost immediately.

Basically, it seemed, I was given the choice of being in pain (no Lyrica) or no brain (with Lyrica). I chose no pain.

I am beginning to question my choice…as my brain and everything in it quickly turns to mush.

119. fibro fogLyrica (and Neurontin, by the way) blocks the formation of new brain synapses, drastically reducing the potential for rejuvenating brain plasticity – meaning that these drugs will cause brain decline faster than any substance known to mankind! (This is not me being OTT – this is a quote by some-one else.)

Synaptic plasticity is a key feature of nerve architecture that enables your brain to tolerate stress, recover from trauma, and make changes. That’s how your brain bounces back from intense stress (or not, in our case). Hmmm….and that could be why I just can’t seem to quit smoking. Our brains, on Lyrica, are no longer flexible or “plastic.”

Doctors use them for all manner of nerve issues because they are good at suppressing symptoms. However, can we justify this use now that the actual mechanism of the drugs is finally understood? – they are creating a significant long-term reduction in nerve health.

148. fibro fogTo make matters worse (yes, they can get worse), antidepressants block the action of acetylcholine. What does acetylcholine do, you might ask? It is the primary neurotransmitter involved with memory and learning. And, how many of us take antidepressants? I know that I do. See what I mean by things getting worse?

Can it really be right to force us to make this kind of choice?

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Foggy with a Chance of Rain

We experience a complicated mix of symptoms (just ask all those doctors we visit), the most frequent of which are an overwhelming feeling of fatigue (this is my personal favourite!) and pain.

For those new to FM, one of its hallmarks can be very scary – Fibro Fog

119. fibro fog

Fibro fog is a complete and utter lack of energy (even after a full night’s sleep) that causes an inability to focus or concentrate. This exhaustion makes it difficult to exert mental or physical energy for anything.  Fibro fog is a real cognitive impairment that makes simple tasks, such as remembering names or following directions, difficult if not impossible. There are, however, a few ways to help that don’t involve medications (because sometimes it’s those medications that make the fog worse!)

  • Pace yourself. Don’t pile on too many tasks for each day, and the ones that must get done should be scheduled for your “best” time of day. If the fog lifts more in the morning, schedule important meetings or other tasks early.
  • Develop a routine. This gives a predictable structure to the day so there is less need for remembering what is supposed to happen when.
  • journal picKeep it simple. Write lists, take notes, and utilize a personal planner. Keep your space organized and clutter-free, and deal with any paper (mail, bills, etc.) as soon as you get it to stay organized.
  • Get physical. People with FM report that physical activity relieves the painful symptoms, and research shows that moderate daily activity eases symptoms of depression and encourages better sleep.
  • Control your stress. There is a strong link between stress and chronic pain; practice deep breathing, visualization, and other meditative techniques to deal with or plan for stressful situations!

There are some new online brain-training sites such as Lumosity that have shown some promise in helping people develop concentration, flexibility in thinking, and otherwise increasing the neuroplasticity of the brain. These are free or low-cost, easy to try, and may help lift the fog over time.

For families of FM patients, it is important to understand that fibro fog is real. Be supportive and help to keep schedules reasonable and stress to a minimum. Participate in physical activity with your loved one, and help them to remember important events. The more stress you can alleviate, the better off everyone will be!

Time is of the Essence

“Next Tuesday, we’re going shopping,” says my Mommy.

Monday arrives and I haven’t forgotten that we are going shopping on Monday; I just haven’t realised that it IS Monday.

One of my big problems is keeping track of time, especially dates. Birthdays and special events creep up on me and catch me unprepared all the time. I know when things are supposed to happen. I hear when some-one tells me about something. I also know how long it is supposed to take me to get ready to leave the house – I really hate being late, but I can’t seem to get a handle on this particular issue.

Like Adrienne Dellwo has said:

The farther out something is planned, the worse it seems to be. It’s like my brain files it under the heading “months away” and then never updates it to “next week.” If something is set for tomorrow or a week from Thursday, I do pretty well. Those things apparently go into the “really soon” file and stay more on the radar.

There’s a learning disability called dyscalculia – a learning disability that deals with math. It is similar to dysphasia, which includes those word-finding difficulties so many of us have. Dyscalculia not only impairs math and number abilities (forgetting concepts, transposing numbers), it also involves:

  • Difficulties with time: inability to remember schedules, keep track of time, or remember a sequence of events.
  • Spacial problems: impaired direction sense and memory of how things are laid out, leading to frequently getting lost or becoming disoriented.
  • Difficulty sight-reading music or learning instrument fingerings.
  • Inability to remember names.

72. manufacturers warrantyResearch shows that dyscalculia involves dysfunction in a specific part of the brain – all of the above problems stem from the same cause. It means that this is ONE problem only; and not a whole lot of unrelated issues being attributed to FM.

This doesn’t necessarily make me feel better after being at the casino last week and not being able to work out the action on the Craps table (I was a Craps dealer/supervisor for 14 years!)

Dyscalculia can occur as the result of some types of brain injury, in which case the proper term is acalculia (or Acquired Dyscalculia), to distinguish it from dyscalculia which is of innate, genetic or developmental origin.

Dyscalculia isn’t something you can take a pill for – it’s something you have to live with. Scientists have yet to understand the causes of dyscalculia. 119-fibro-fogThey have been investigating in several domains including short-term memory being disturbed or reduced, making it difficult to remember calculations (Does this sound like Fibro Fog to you?) I haven’t found any scientific research that says that FM causes Dyscalculia (if you do, please share it with all of us!) but it certainly makes it worse.

The good news(?) is that it is a recognised learning disability, just like dyslexia or dysphasia. If it causes problems for you at work/school, you can talk to your boss/teacher about having this learning disability without having to disclose that you have FM, or trying to explain brain fog.

Hidden Pain or Thick Fog?

Now, I get it.

When I was first diagnosed, my doctor put me on Lyrica immediately; and then, it was steadily increased. If you’ve been reading this blog, you’ll know that I’m weaning off it. (If you’re not up to date, check Whatever…Nothing!) Well, I’m up to Week 4: I’m pissed off, short-tempered and in pain.

doses

It has even ruined the best part of my week: my shiatsu massage.

Last week’s massage was fabulous. This week, however, was another story; and, as I said at the beginning, now I understand how some of you can’t stand a massage.

pain 1pain 2The same place (no idea what it’s called) was incredibly sensitive but it got to the stage where if Peter touched my shoulder, that spot hurt; if he touched my arm, that spot hurt; if he touched my knee, (you guessed it) that spot hurt.

pain 3pain 4In fact, by the time the hour was up, if Peter touched anything, that spot hurt!

pain 5

Why the hell am I doing this to myself?

Well, the good news is that the Fibro Fog has lifted. So tell me, which would you prefer: the pain or the fog?

♩♫ Lyric(a) Writing is an Interesting Process ♫♩

So Week 3 started today…my body aches just a little more each day, the fog is not lifting (which I really thought it would), and my face hurts beyond words.

doses

It doesn’t help that I had to go to the dentist for a Crown preparation so last night was spent with some frozen vegetables attached to my cheek.

And I’ve hit exhaustion – I think I have over-loaded myself with the Thunderclap campaigning (nagging), blogging every day, reminding contributors for the next issue of LIVING WELL with FIBROMYALGIA, tweeting, my shop and my FB page – it’ll all quiet down after May 12th but right now, I keep getting anxious that I’ve forgotten something to do. spireI’m also trying to get ‘them’ to light a spire (that we have in Melbourne) in PURPLE for May 12th (looking forward to a night-time picnic with Thais (did I tell you she’s back?) under the spire – anyone else coming? You can help by emailing the appropriate people)

I’m also trying for Sydney Harbour Bridge and the Opera House but I think I’ve left that one too late! (If you want to help with this one: tweet to @VividLive  Niagara Falls will B PURPLE from 10:15-10:30PM EST on May 12 for #Fibromyalgia Awareness: can we light up the Bridge & Opera House?

sydney opera house Sydney_Harbour_Bridge01

So I haven’t had a chance to FEEL anything. I just want to rest BUT I don’t feel I can as this is the lead-up to Awareness Day (I can rest afterwards, right?).

I try not to nap during the day (no matter how bad it gets) but today, I fell asleep for 4 hours.

My body just wants to stop – but, as you can see, I have no idea if it’s medication related or just life!

Blaming Fibro Fog?

8 Other Reasons You May Be Forgetful…

forgetfulSo, you know you were supposed to be doing something – but you just can’t remember what it was. Or, in the middle of a conversation, you can’t remember the words you need. Don’t necessarily put it down to age, working too hard, having an overloaded mind or Fibro Fog. There are other common health problems that can cause forgetfulness.

High Blood Pressure

The REGARDS study in the US found people with high blood pressure perform worse in memory tests and their memory shows greater deterioration over time. The study involved more than 30,000 people over four years. “The increase in blood pressure can mean structural changes in the blood vessels, making them thicker and making it harder to get blood around your body,” says Dr Gavin Lambert, from the Baker IDI Heart & Diabetes Institute. “As a result, you can get organ damage. That can be in the brain as well and affect your recall and cognition.” So eat a balanced diet, maintain a healthy weight, exercise regularly, don’t smoke and if you are on blood pressure medication, take it as prescribed.

Chemotherapy

A study at Stanford University in the US found breast cancer patients who had chemotherapy suffered some impact to the parts of the brain responsible for memory and planning.

“One of the potential undesirable side effects of chemotherapy is what we loosely call ‘chemo brain’ or ‘chemo fog’,” says Dr Helen Zorbas, CEO of Cancer Australia.

“It can be mild or more significant in effect. While there’s nothing that can be done to help it, I think just knowing it’s a common side effect is important for women and they should be reassured that in most cases it’s mild and self-limiting.”

Menopause

A 2008 study at the University of Illinois found a link between hot flushes and poor verbal memory. The study followed other research that found about 40 per cent of women report becoming more forgetful around menopause.

“The more hot flushes a woman had, the worse her memory performance,” says researcher Professor Pauline Maki. Maki found women whose hot flushes disturbed their sleep suffered even worse memory problems.

Dr Elizabeth Farrell, consultant gynaecologist with Jean Hailes for Women’s Health, says while there is no conclusive evidence that menopause triggers memory loss, women do report feeling more muddled sometimes.

Thyroid problems

If you have hypothyroidism – an underactive thyroid – your thyroid gland doesn’t produce enough thyroid hormone. This leads to a slower metabolism and tiredness, and can lead to some forgetfulness.

Hypothyroidism is more common after the age of 40 and affects about six to 10 per cent of women and a smaller number of men.

“When you have a medical condition that causes fatigue, it’s easy to become forgetful. But when hypothyroidism is treated, people recover well and memory recovers, too,” says Dr Ronald McCoy, a spokesman for the Royal Australian College of General Practitioners. Hypothyroidism can be treated with medication.

Long-Haul Travel

Memory can start to be affected after a flight lasting more than four hours – such as a Melbourne to Perth trip, McCoy says. “It’s similar to people having a knock on the head and suffering short-term memory loss. They recover but may not remember what happened at the time,” he says. “People function well at the time but the day later they have problems recalling what happened at certain times.”

Pregnancy

It’s true – pregnancy can affect memory. “Well practised memory tasks, such as remembering phone numbers of friends and family members, are unlikely to be affected,” says researcher Dr Julie Henry, who was involved in a University of New South Wales study that found pregnant women do suffer some temporary forgetfulness.

“It’s a different story, though, when you have to remember new phone numbers or hold in mind several different pieces of information.” She says the upheaval that comes with pregnancy may be the reason.

Vitamin B12 Deficiency

“Vitamin B12 is essential for normal neurological function,” says Denise Griffiths, a spokeswoman for the Dietitians Association of Australia. “Deficiency of vitamin B12 can result in cognitive changes, from memory loss to dementia.” Scientists believe vitamin B12 may safeguard the myelin sheath – a layer that insulates our nerves. If the sheath is damaged it can affect the transmission of messages to and from the brain.

Alcohol

“Alcohol prevents the storage of the short-term memory into the long-term memory,” McCoy says. “So people drink and function but can lose memory of what happened during the time they were drinking. ”Too much alcohol has a negative impact on the hippocampus – a part of the brain involved with recording and storing memories.

 

Reprinted from Volume 2: Issue 1 of LIVING WELL with FIBROMYALGIA

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Internet Dating and Fibro Fog

I guess, at the best of times, internet dating can be very time-consuming and mind-boggling…

Now, imagine it with Fibro Fog!

Let’s Start with a Blank Slate…

One of the worst symptoms of FM (along with the fatigue) for me is the Fibro Fog.

Most worrying to me is my loss of words. I can’t find the words in my brain anymore. (This was most disturbing to me as I had recently completed by Bachelor of Laws with Honours, so normally my brain is extremely organised). Sometimes I can feel where they are in my head but I just can’t reach them.

What seems like a long time ago, I saw this cartoon, which really describes how I feel most days:

fibromodem

This is also where my username and other things to do with my site came from; so when I came across this post from Alice in Fibroland, I just had to share it…

Pants, shoes, and other useful things

I knew fibromyalgia had taken over my brain when I walked halfway out my front door, ready to head to work and errands, with nothing on my lower half but undies and socks.

How could I have forgotten such important and useful items as pants and shoes?  And I didn’t just forget to put my pants on that day; I had no memory of choosing pants to wear, ironing them, or laying them on my bed while getting other things ready.  If you have fibro you are probably nodding your head and laughing in understanding, because you’ve been there!  Whether it’s your pants or something else, fibro fog is a constant reality.

And who else is annoyed with the name fibro fog?  To me, it’s more like fibro blank slate.  Or fibro deep space.  A fog implies that the information is there, but something is blocking it.  Sometimes I feel like the details I want my brain to access have been totally erased or just floated away.

Of all the ways in which fibro has affected me – between the crushing fatigue, the muscle spasms, and the neurological oddities – fibro fog is the most frustrating.  I miss my brain.  I miss being able to work out a problem with measurements when cooking or quilting.  I miss have an in-depth conversation on complex political issues with my husband.  I miss being able to enjoy a book because I can’t remember what happened in the beginning or focus long enough to finish a page.  I miss… um, what was I talking about?

Do you have any nutty fibro fog stories?

Sleep Deprivation Torture

It seems to be that EVERYONE is discussing sleep (again!)…or lack of it, to be more precise. Is this a seasonal cycle? Or is it just coincidental that we ALL are suffering from (and discussing) sleep deprivation right now?

So what happens to our bodies when we don’t get enough sleep?

Dr. Rafael Pelayo of Stanford University’s Sleep Disorder Clinic doesn’t mince words:

This is what happens to your body if it’s deprived of sleep:

  • You have problems with memory and concentration.
  • You have problems finding the right word.
  • You get irritable – you think so?
  • Neurotransmitters in the brain become altered.
  • You become more susceptible to infection.
  • At its extreme, sleep deprivation can lead to death.

Depression and Low Self-Esteem

Sleep-deprived people have longer illnesses, more severe depression, and greater fatigue than those who aren’t sleep deprived. Other studies link sleep deprivation with self-esteem problems. Getting good sleep and curing insomnia helps to fight depression and increase self-esteem.

Weight Gain

If you’re losing sleep your body mass index (BMI) is likely to increase, and so is your waist circumference (hey! where’s the part about my arse?). According to Professor Francesco Cappuccio of Warwick Medical School, your risk of becoming obese is almost doubled.

Sleep deprivation increases appetite through hormonal changes. Specifically, more of the appetite-increasing ghrelin is produced when you’re not getting good sleep; less of the appetite-suppressing leptin is produced. Sleep deprivation causes you to eat more.

Physical Appearance (other than weight)

I can’t believe that I’m publishing this photo – but please, tell me my appearance isn’t changed because of those big black circles under my eyes!

Despite study participants being convinced that their looks were affected by their lack of sleep, Alex Gardner of the British Psychological Society and emeritus Professor of Dermatology Ronnie Marks of the University of Wales found that sleep deprivation did not alter study participants’ physical appearance – tell that to the black suitcases under my eyes! Nonetheless, the study participants who were sleep deprived felt self-conscious about their appearance and thought their skin showed their lack of rest. Getting good sleep makes you feel better about yourself — but doesn’t change how you look.

Memory Loss

Dr. Jeffrey Ellenbogen of the Harvard Medical School found that “sleep protects memories from interference.” The more quickly you fall asleep after studying for a test or learning a new skill, the more likely you’ll remember it later. If you learn new information and then go about your daily business, you’ll have about a 44% lower chance of retaining what you’ve learned. This research could be particularly helpful when you’re learning a new job. Getting good sleep helps your memory, while sleep deprivation damages it.

Intellectual Impairment

Researchers at the University of Virginia have found that lack of sleep can impair IQ and cognitive development. Sleep helps to organize memories, solidify learning, and improve concentration. Getting good sleep increases cognitive ability and the ability to relate to others.

Physical Impairment

According to the National Sleep Foundation, your body suffers when you don’t get enough good sleep. Your coordination and motor functions may be impaired, and your reaction time may be delayed. You could have reduced cardiovascular performance, reduced endurance, and increased levels of fatigue because of sleep deprivation. Tremors and clumsiness can also result.

Immune system

It doesn’t seem fair… Right when you are exhausted after a stressful move or a big project at work, you come down with a cold. That’s no accident – sleep is essential to the immune system. Without adequate sleep, the immune system becomes weak, and the body becomes more vulnerable to infection and disease.

Nervous system

Sleep is also a time of rest and repair to neurons. Neurons are the freeways of the nervous system that carry out both voluntary commands, like moving your arm, and involuntary commands, like breathing and digestive processes.

Recent studies have suggested that sleep downtime of the brain, so active during the day, may replenish dwindling energy stores that cells need to function, repair cellular damage caused by our busy metabolism, and even grow new nerve cells in the brain.

Hormone release

Many hormones, substances produced to trigger or regulate particular body functions, are timed to release during sleep or right before sleep. Growth hormones, for example, are released during sleep, vital to growing children but also for restorative processes like muscle repair.

Sleep deprivation can be dangerous not only to you but others, since it affects motor skills like driving. Chronic sleep deprivation is also thought to cause long-term changes to the body, which contribute to increased risk for obesity, diabetes and heart disease.

When you continuously don’t get the amount of sleep you need, you begin to pay for it in daytime drowsiness, trouble concentrating, irritability, increased risk of falls and accidents, and lower productivity.

So when is some-one going to help us?