Posts Tagged ‘Chronic fatigue syndrome’


Source:  Goista.com

Turks and Caicos Islands, Mommy’s Vacation

It’s official; I have a high school student, a brand new middle schooler, and a fourth grader.  Wow.  I’m so proud of all of them.  Today is the first day of their summer vacation, and as it happens it’s the first day of summer.  Cool.

I’m having my first real weekend day of having nothing to do or worry about.  My Darling Girl is playing on my cell phone, trying to find as many promo clips as possible for “How To Train Your Dragon 2.”  The Princess is upstairs relaxing, playing Mario something or other on her DS.  Sweet Girl is at a birthday party for a good friend at school, her first one since kindergarten.

It’s quiet, as it should be on this beautifully sunny and not-too-hot day.

I might even get a nap later.

HA HA HA HA HA!

No, really, I’m aiming for a nap.  In spite of the current seeming calm, I was rudely awakened too early this morning.  Sweet Girl was upset about something her Daddy said about her skirt and washing it.  Chocolate chip pancakes fixed all that, along with a suggestion to, you know, wear a clean skirt.

A nap will help me process just how old my girls are getting.  Yeah, that’s it.

So the girls’ vacation starts today, but mine doesn’t start until August.  I can barely stand it.  I need that beach.  If I fall asleep on it, see… my children won’t wake me up while I’m on it.  I’m going on a Momcation with a few friends in a month and a half.  It’s our 40th Birthday Year celebration.  More on that later.  I’m hoping if I get a nap later, my Momcation will be in my dreams.

Of course I’d love to take the girls somewhere this summer too.  The Husband wants to go to the Cape.  I want somewhere less… boring for the girls.  This may take some research, especially since we have to keep the drive manageable.  It may end up being near the holidays, though, to give us more time to save some money.  I’d love to bring the girls back to New Hampshire after it snows and Christmas lights are up everywhere.  Maybe it’s not too late to find a place to go camping for the weekend and we can get a decent tent with a decent air mattress.  Or rent a cabin, ha ha.  That would be awesome for “camping.”  They could use a tent, and I’ll use a cabin that has electricity.

Eh, or we do the Cape.  They’ve got beaches and hotel rooms there.

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The secondary somatosensory cortex is colored ...

The secondary somatosensory cortex is colored green and the insular cortex brown in the top right portion of this image of the human brain. Primary somatosensory cortex is green in the top left. (Photo credit: Wikipedia)

 

I know it’s been a while since my last installment of Nitty Gritty, but here we go.  I’d like to discuss the actual changes to the body, particularly the brain, that occur in people that endure the chronic pain of Fibromyalgia and the associated Chronic Fatigue Syndrome (CFS).

 

There are actual physical, structural changes to the brain in people that suffer from chronic pain of disorders such as Fibromyalgia.   With an estimated 3% of the population suffering from Fibromyalgia, it’s important that we look at the effects of pain on the body and the brain in addition to the causes of the pain.  The effects of the pain are why we need a cure.  Sure, pain itself sucks.  That in itself is a reason to find a cure but long term chronic pain actually has effects of its own.

 

Check this out:

 

Structural brain changes in chronic pain reflect probably neither damage nor atrophy (click here).

Source

Department of Systems Neuroscience, University Medical Center Hamburg Eppendorf, Hamburg, Germany

 

Chronic pain appears to be associated with brain gray matter reduction in areas ascribable to the transmission of pain. The morphological processes underlying these structural changes, probably following functional reorganisation and central plasticity in the brain, remain unclear. The pain in hip osteoarthritis is one of the few chronic pain syndromes which are principally curable. We investigated 20 patients with chronic pain due to unilateral coxarthrosis (mean age 63.25±9.46 (SD) years, 10 female) before hip joint endoprosthetic surgery (pain state) and monitored brain structural changes up to 1 year after surgery: 6-8 weeks, 12-18 weeks and 10-14 month when completely pain free. Patients with chronic pain due to unilateral coxarthrosis had significantly less gray matter compared to controls in the anterior cingulate cortex (ACC), insular cortex and operculum, dorsolateral prefrontal cortex (DLPFC) and orbitofrontal cortex. These regions function as multi-integrative structures during the experience and the anticipation of pain. When the patients were pain free after recovery from endoprosthetic surgery, a gray matter increase in nearly the same areas was found. We also found a progressive increase of brain gray matter in the premotor cortex and the supplementary motor area (SMA). We conclude that gray matter abnormalities in chronic pain are not the cause, but secondary to the disease and are at least in part due to changes in motor function and bodily integration.

*There’s another article here: http://www.sciencedaily.com/releases/2012/07/120701191611.htm

Okay, so that means that there’s a possible explanation for the infamous Fibro Fog, which is a type of cognitive dysfunction that many people with fibromyalgia have during particularly bad and/or extended pain flare-ups.  Symptoms include difficulty with concentration, memory deficits, difficulties using language, difficulties learning and retaining new information, and confusion.  Some sufferers of fibromyalgia and researchers have suggested that Fibro Fog is caused by sleep deprivation, depression, nervous system disturbances that cause the brain the receive less oxygen, but the majority of research doesn’t support any of those hypotheses.

Not only that:

Futurity.org – Chronic pain alters how DNA works in brain.

Chronic pain alters DNA marking in the brain | Newsroom – McGill University.

and this:

Structural changes in chronic pain.

It’s a lot to think about.  It’s not ALL in our heads… but some of the effects are.  In the next Nitty Gritty I’ll introduce the discussion on the effects of chronic pain on the body.

 

 

 

 

 

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FIBROMYALGIA

FIBROMYALGIA (Photo credit: *SHESHELL*)

This could be really good, really big news for those of us who have Fibromyalgia.  If there’s a known source and cause, then that means there’s a higher chance of finding a cure… and finding it faster.  Or at least drastically reducing the pain.

Rational Biological Source Of Pain Found In The Skin Of Patients With Fibromyalgia (click here).

There’s also this article: 10 Causes Of Fibromyalgia Your Doctor Doesn’t Know About (click here).

I hesitated to share these articles, though, because nothing in them can really be certain.  Fibromyalgia is different for everyone that has it.  The types of pain are different.  The cycles are different.  What triggered the onset of the Fibromyalgia is different.  The progression of the disease is different.  Exacerbating factors are different.

There’s also the fact that while I’ve only had the diagnosis for a couple of years, I see the history that others I share the diagnosis with have gone through.  There have been supposed breakthroughs before.  Hopes are raised and then dashed.  What works for some doesn’t work for most.  I’ve experienced this with Cymbalta.  It works great with anxiety, to a point, but doesn’t do a single thing for the pain.  That has my shrink baffled, but I’m not surprised since she comes from the stance that chronic pain due to Fibromyalgia is actually psychosomatic and caused by stress, depression, and anxiety.  I do have those things, but they’re not causing my pain.  Not when those factors are under control.  And not when the pain is what makes my depression and anxiety worse rather than the other way around.

Anyway.

My real purpose was to get these articles up and shared.  I have some other issues I’d like to discuss but I’m feeling foggy and jumbled.

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Manage My Pain Lite app

I have an app on my phone that helps track my fibromyalgia symptoms.  I added it last week.  It’s called Manage My Pain.  I got the Lite version, which is free, but still very detailed.  It has things in it that I didn’t think of or forgot were related to fibromyalgia.  It’s a great app.  I just have to consistently remember to enter my symptoms as I have them.  I found the app on Google Play. [edit: I forgot to mention that if a symptom isn’t already suggested in the app, you can add it in to the list yourself. It’s very easy to add things into the app as needed.]

Speaking of symptoms, the fatigue has been hitting me like a Mack truck.  I feel it hit me at 2:30 and if I don’t lay down to nap, I find my eyes burning and nodding off.  It’s a good thing I’m waiting for the paperwork right now to go through in order to go back to my new job.  It’s been going on daily since Friday or Saturday.  When I get the nap, you would think I wouldn’t sleep through the night but I’m still sleeping very solidly through the night.

Chronic Fatigue … I wish I could shake it.  It shakes off briefly when I do an activity, but it reaches a point when I can’t ignore it and the distraction of the activity, the momentum of the activity simply doesn’t work.  Everything becomes too heavy, tired, slow, aching, and so necessary to simply sleep.  CFS.  It’s hard to explain to people that it’s not laziness.

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Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

In this segment, I’ll be addressing symptoms that are common with Fibromyalgia.  When I refer to flare-ups, for the most part I’m referring to the severe pain flare-ups and not the daily chronic pain and other daily chronic symptoms.  It’s so much more than the quick sound byte you see on the Lyrica and Cymbalta commercials.  “Fibromyalgia, thought to be the result of over-active nerves sending widespread pain.”  Or the rheumatologist‘s view: it’s a musculoskeletal disorder that causes pain in the joints and muscles/fibrous parts of the body.

That’s only if you can find doctors that will recognize it as legitimate.  Yes, it’s true.  A great many doctors believe that it doesn’t actually exist.  You can’t take a blood test for it.  You can’t do a scan for it.  You can’t do an X-ray or an ultra-sound.  There’s no visible cause for the pain.

If there’s an old injury that hurts much more than it should, there’s no explanation for why it hurts more than it should if at all.  The only explanation is the disorder of Fibromyalgia itself.  And the only “test” is putting pressure on the 18 tender points on the body but it’s not 100% reliable.  Many doctors aren’t even aware of that test (I wish I were making that up). The pain is much more than “joint and muscle pain.”  It goes far beyond aching, but that’s a place to start in description.  Imagine  a full body workout with weights on top of jogging at the gym after not working out for years.  Not only that, but you go for a swim.  When you get up the next morning, imagine how your body feels.  Except in addition to that, imagine the “cracking your knuckles” feeling in your knees, neck, shoulders, and back.  Imagine that nearly every morning when you get out of bed, simply stepping on the floor sends rockets of pain from the bottoms of your feet up through your calves, aching and pressing at the same time, partly due to the pressure and partly due to the temperature of the floor.  Slippers can only moderately cushion the sensations.  You hobble to the bathroom, sciatic area already aching, the light too bright, and you brace yourself for having to sit on the porcelain throne.  Why? That hurts too.

But it’s very important to note that Fibromyalgia affects everyone differently.  So very, very important.  As I’ve mentioned before, it’s sort of a spectrum-y disease.  It can be worse for some people when they’re still in their teens and twenties, or it might not be diagnose-able until they’re in their 30’s and 40’s.  It ends up being a disease diagnosed by exclusion of other diseases as well as the symptoms that you do have.  But because it’s so different for everyone, that means that not everyone copes the same way.  Not everyone’s pain is the same.  Not everyone has the same abilities or disabilities.  What works for one doesn’t work for others.

I had someone over the weekend criticize me for still not having found a job yet.  Yes, I’ve been job hunting.  Emphatically.  She said,

“You know that So-And-So also has Fibromyalgia, right? Well, she has a full time job.  She works all day every day! She takes care of her family AND SHE WORKS! If she can do it then you can too!  So why can’t those people helping you try to find a job find you a job?”

There are so many things wrong with that statement, but my point here for the moment is that she didn’t really grasp the concept that Fibromyalgia is such an individual disease.  So-And-So’s symptoms may not be as progressive as mine are, or she may have her symptoms under better control or medications are working better for her.  It could be any number of things.  She may be more progressive than I am, and she’s just not letting on that she needs to cut back her hours at work and is suffering through her days while her weekends are her time to detox.  Who knows? Some people are crippled by this disease and can’t get out of bed.  Others can climb mountains.  [/end rant]

Diet can be a Very Big Deal in handling symptoms.  A natural diet with little in the way of preservatives, artificial sweeteners, artificial food dyes, staying hydrated, avoiding foods that are allergen triggers, avoiding foods that cause digestive upset depending on the person… all can help reduce flare-up frequency, flare-up duration, and flare-up intensity.  Diet can trigger a flare-up.  For instance, I have to avoid foods that tend to be associated with Diverticulosis and Diverticulitis.  I will get the symptoms of Diverticulosis.  I was actually hospitalized for that a year ago this past October.  That means I need to avoid foods with the whole grain, seeds, nuts (which I’m already allergic to), and other foods I know I’m allergic to.  No cucumbers, no seedy tomatoes, no strawberries or raspberries or blackberries.  It will trigger severe digestive upset, and that will also trigger full body flare-up of pain.  Controlling the diet has helped reduced the severity of my symptoms.

So like my daughter Gracie, I’m following a modified Feingold Diet.  I’m also finding that if I reduce lactose in my diet, the flare-ups and digestive upset are reducing in severity.  The more I know!

I’ve also found that yoga can help with some of the symptoms.  I try to do yoga daily, but on days when I’m having a terribly bad flare-up the yoga can make it worse.  Yoga in general, however, is a wonderful benefit for Fibromyalgia.

FIBROMYALGIA

Heat therapy, hot showers, and water therapy (swimming) are also wonderful although admittedly not always as effective as I would like.  Unfortunately, there’s no cure.  What has helped the most is recognizing the symptoms and why I have them.  Sometimes all you can do is treat the symptoms.  I’ve actually found that I have less anxiety now knowing why I have all of these chronic problems, and I can address them as they occur, such as making sure I take good care of my eyes by keeping my prescription updated and wearing transition lenses.  I avoid foods that will trigger eczema, since when the eczema flares up so do my pain symptoms.

Anyway.  Common symptoms that you may have noticed over the years but not associated as belonging together because of the nature of Fibromyalgia being a disease that affects every major system of the body (not all of these symptoms will appear all at once or even in the same week but can be spread out AND most importantly not everyone will have all or even most of these symptoms, especially early on in the disease):

  • Widespread Pain in joints and muscles
  • Muscle Weakness
  • Morning Stiffness
  • Back Pain
  • Chronic Fatigue Syndrome
  • Vision Problems
  • Nausea
  • Sleep Disorders
  • Urinary and Pelvic Problems
  • Weight Gain and difficulty losing weight
  • Dizziness
  • Chronic Headaches (migraines and tension)
  • Chronic Cold Symptoms
  • Temperomandibular Joint Dysfunction Syndrome
  • Multiple Chemical Sensitivity Syndromes
  • Fibrofog“: Cognitive or Memory Impairment
  • Skin Complaints
  • Chest Symptoms
  • Anxiety
  • Depression
  • Dysmenorrhea
  • Aggravating Factors
  • Myofascial Pain Syndrome
  • Muscle Twitches
  • Memory Loss
  • Weather Changes affecting flare-ups
  • Troubles Breathing
  • Asthma
  • Food Allergies and Intolerances
  • FIBROMYALGIA (Photo credit: *SHESHELL*)Seasonal and Contact Allergies
  • Fainting feeling upon standing up from sitting position
  • Digestive problems similar to Irritable Bowel Syndrome
  • Irritable Bladder
  • Swelling in the hands and feet
  • Reduced tolerance for exercise and muscle pain after exercise
  • Stiffness upon waking or after staying in one position for too long
  • Sensory Processing Disorder
  • Jaw and facial tenderness
  • TMJ aka  Temporomandibular Joint Disorder
  • Tinnitus (ringing in the ears, and can be constant or can signify an oncoming or worsening flare-up)
  • Hair Loss
  • Numbness or tingling in extremities
  • Injury “memory” (old injuries that are healed still cause “phantom” pain for no apparent reason)
  • Barometric pressure changes affect body pain and headaches
  • Sensitive to blood sugar levels and dehydration
  • Compromised immune system: frequent illnesses and infections

You can see why, from this list of symptoms, people have a hard time understanding why Fibro is so serious.  They don’t know about all of these different issues that affect daily life.

If you suffer from Fibro, one of my best pieces of advice is to keep a journal.  A portion should be an activity journal and a portion should be a food journal.  Keep track of how much sleep you’re getting, how much fluid you’re taking in, as well as the weather changes that occur around flare-ups.  You’ll begin to notice patterns in your general health as well as what may trigger your flare-ups and makes them worse.

Talk to your doctor about getting to a Rheumatologist.  For now, that’s what we have.  We don’t have a Fibromatologist, but a Rheumatologist.  Be a pain in the butt until you find one that will take you and listen to you.  Arm yourself.  Walk in with a full list of your symptoms and how long you’ve been feeling them.  Write everything down so that you don’t forget everything.  You have to go in sure of yourself.  Be open to back and forth discussion, but make sure that you have a clear idea of your medical history.

 

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