Fibro Veggie

My eldest daughter just asked me if being vegetarian was easy.  I had to be honest with her.

“Most of the time it’s easy, unless bacon is involved.”

I haven’t found a way to keep bacon in the house and prepare it for others without wanting to eat the whole pound.  As a vegetarian I would still eat bacon wrapped bacon, and then as someone with Fibromyalgia I would regret it for the next couple of days with some pain issues.  Even as I regretted it, I would consider it worth it because it was bacon.

Otherwise I don’t miss meat.  I miss some of the seasonings used.  For instance, if I’m craving buffalo wings I realize that it’s not the meat I’m craving but the buffalo sauce and dipping it in ranch or bleu cheese dressing.  I found a fix for that.  I put hot sauce on my pizza.  I also do something after that, which I used to think was gross when I heard people talk about it:  I take the hot sauce pizza and dip THAT into ranch or bleu cheese dressing.  It’s perfect.  Not vegan, but I’m not vegan.  :-)

I also enjoy seasoning my tofu with hot sauce and chili pepper, much like a taco, and while it will never taste like taco filling and will never be the same texture as any sort of recognized taco filling, I get the seasonings I love and top the tofu onto rice and black beans.  Sometimes the tofu has curry, sometimes Lawry’s salt.  Sometimes I put it in a chef salad with avocado in place of BBQ chicken.  It’s EVEN BETTER than BBQ chicken that way.

The hard part is if/when we go out to eat at a restaurant although most seem to be catering more to vegetarians these days.  It’s harder when you’re a guest in someone’s home and nearly everything they’re serving is meat or was cooked steeping in meat.  Making adjustments and accommodations is necessary, but it’s hard to compromise when it’s for health issues.  That’s what I’m slowly coming to terms with.  The rare cheat just might not be worth it.

So yeah, vegetarianism is easy when I consider the alternative.

Except when I’m confronted with bacon.

Related articles

• Crispy Buffalo Tofu (foodiefriendsfridaydailydish.com)

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Fighting A Fibro Cluster

Fibromyalgia Awareness (Photo credit: Kindreds Page)

New England winters are not for Fibromyalgia sufferers.  I don’t know whether to count this flare up as a new one, or a continuation of what I’ve been feeling for the past month. I get several days in a row of some of the worst pain in various areas of my body on top of my baseline pain, and then a day of relief with nothing but baseline pain.  Then I get up, it hurts to roll over in bed to get out of it, and I feel shock waves of pain as my feet touch the floor.  Reaching to remove the blankets sends rockets of pain through my back and shoulders.  I hobble to the bathroom.  It hurts to get in and out of the shower.  I feel grateful that when we moved in, the previous owners had already altered the tub so that it has handle bars inside on the walls.

As I wash and rinse my hair, I realize that I have a brand new clump of loose hair.  Not the regular that you lose while washing or brushing your hair… but twice or triple that amount.  Even though it happened several days ago instead of like a normal person with a normal amount, monthly.  I try to wash my calves, but it hurts.  I nearly trip getting out of the tub because I realize I can’t lift my legs up high enough.

Advil isn’t working.  Hydrating isn’t working.  Cymbalta isn’t working.  Positive thinking isn’t working.  Cussing isn’t working either.

The biggest insult isn’t the difficulty losing weight.  It’s not even having to use the cane and by the end of a day, hunching over from exhaustion and pain.  It’s when you have clusters of flare-ups and, as a woman, the hair loss is noticeable.  It’s when, as a mother, it hurts to hug your children because your skin is so hyper-sensitive.  It’s when, as a wife, you’re afraid that your husband thinks you’re using your pain as an excuse not to participate in certain aspects of the relationship and chores.  It’s when in spite of living a healthy lifestyle and eating well, you see positive results and think you have it mastered but then the hammer comes down and you get a solid month of, “Yeah, right.”

It’s when you wander in the fogginess at unexpected times, and it makes your usual sharpness and intellect seem dull and fleeting.  Stuttering, flaky moments, long pauses trying to find the right words… things that used to be blamed on Mommy Brain but are too far away from the newborn and toddler days to be Mommy Brain any longer.

The entire disorder is an insult.

I can’t afford to sleep all day.  I can’t afford to eat Advil nonstop.  I can’t afford to push my children and husband away.  I can’t afford to cry and use up all of my tears.  I can’t afford to use up all of the hot water to try to soothe the aching muscles and nerves.

I want a hot tub.

Related articles

• Answers (painfighter.wordpress.com)
• Not so much (fibromyalgiaodyssey.wordpress.com)
• Pain Today…Gone Tomorrow (walkingthroughpain.com)
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Fibro Symptom Tracker

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.

Related articles

• What is Fibromyalgia? (lifeinthefibrolane.com)
• Autism and Fibromyalgia: Can they be Linked as an “Auto-Immune” Disorder Originating In-Utero? (guardianlv.com)
• The Fibromyalgia Cycle (painfighter.wordpress.com)
• Good Fibromyalgia Resource (painfighter.wordpress.com)

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Fibro Fine Tuning & Vegetarianism

 

I’ve been successfully vegetarian since the beginning of August.  Except for “test periods” or falling off the meat wagon on three occasions which, I have to say, if they were coincidences they were pretty timely coincidences, I’ve been able to keep up with vegetarianism without any problems or complaints.  It’s not easy when you attend a barbecue, because no matter how bad hot dogs are for you they’re so good.  I just have to get back into my old mindset that hot dogs are nasty.  I went through a really long phase for years where I wouldn’t touch hot dogs.  Time to go back in time.

I was saying something about coincidences and I was talking about flare-ups.  I’ve definitely noticed that when I’ve eaten meat, my pain flare-ups are worse.  I swell more, and I have more widespread pain as opposed to localized pains.  I also get more dehydrated.  I had hoped that chicken wouldn’t be a problem, but it seems to be included as something to avoid.

It’s all right, so far I haven’t had any cravings and I’m getting all of my protein and vitamins from my veggie intake.  There are also some great meat alternatives out there.

I’ve also managed to cut out the majority of my lactose (milk sugar) intake and that seems to be helping.  It’s definitely helping gastric upset.  I would hate to give up cheese and yogurt and ice cream… so here’s hoping that keeping it minimal will be enough.  I’m hoping that I don’t have to go the route of eliminating gluten since I’m already eliminating most dairy, high fructose corn syrup and red 40 (just like for Gracie but for different reasons).

The pain was bad enough today that I felt that fog, and it was frustrating because I’m finishing a work assessment.  Luckily the woman who was “coaching” or observing me today was still impressed with my skills and functions even though she could tell I was in a lot of pain.  I kept kicking myself for having that small piece of chicken and the hot dog yesterday.  My fingers.  My wrists.  The back, shoulders, the crackling neck.  The thick tongue and clicky jaw.  Not worth it for the barbecue.  Next time, I’ll bring salad with the cupcakes.

Sleep.  Early sleep and a hot shower, some green tea, a birthday cupcake with my birthday girl, and all will be great.   I’ll dig up the hot water bottle and float off to a heated sleep.

Related articles

• Fibro doesn’t like to be on its own! #fibromyalgia (whatonearthisfibro.wordpress.com)
• What is Fibro Fog? (warriorchildkc.wordpress.com)
• An Irritable So and So (fibrofella.wordpress.com)

 

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Lactose-Free Chewy Caramels

 

I made some lovely lactose-free chewy caramels last night.  They’re to die for, and I only had to adapt a recipe a little bit, as opposed to making it 100% unrecognizable.  They’re definitely not vegan nor are they safe if you have a whey allergy, and I’m not sure what the adjustments to make should be in that case.  My apologies.  But if you’re looking simply for “Lactose Free Chewy Caramel” then this may be an option.

What started out looking like this:

Caramels:
Ingredients
1 1/2 cups (360 ml) heavy whipping cream (has a 36-40% butterfat content)
1 cup (200 grams) granulated white sugar
1 cup (210 grams) packed light brown sugar
2 teaspoons kosher salt
2 teaspoons pure vanilla extract

Butter an 8 x 8 inch (20 x 20 cm) baking pan.

In a heavy medium sized saucepan, stir together the cream, sugars, and salt. Place the saucepan over medium high heat and bring to a boil, stirring constantly with a wooden spoon. Once the mixture boils, with a heatproof pastry brush that has been dipped in warm water, wash down the sides of the saucepan to remove any sugar crystals that may have formed. Clamp a candy thermometer to the side of the saucepan. Boil the mixture over medium high heat (do not stir) until the temperature reaches 245 degrees F (118 degrees C). (If sugar crystals form on the sides of the pan, wash them down with a heatproof pastry brush that has been dipped in warm water.)

Remove from heat and stir in the vanilla extract. Pour the caramel into your prepared pan and let cool, undisturbed, for at least eight hours, or overnight.

With a sharp knife, (oiled with a tasteless vegetable oil, like safflower), and with a sawing motion, cut into squares or rectangles. These caramels can be stored at room temperature, between layers of wax paper, for several days. Caramels make a nice gift, especially when wrapped in wax paper or cellophane.

Makes about 48 pieces. Preparation time40 minutes. 

Adapted From:

Rosen, Michael J.Baking from the Heart. Broadway Books. New York: 2004.

Source for Recipe: http://www.joyofbaking.com/candy/Caramels.html

Now looks like this:

Lactose-Free Caramels:
Ingredients
1 cup Lactaid whole milk
1/2 cup (1 stick or 8 TB) salted butter
1 cup granulated white sugar
1 1/2 cup packed light brown sugar
2 teaspoons pure vanilla extract
3-to-4 TB cornstarch

Butter an 8 x 8 inch (20 x 20 cm) baking pan.

Mix sugars and cornstarch together until well blended in a mixing bowl.  In a heavy medium sized saucepan, stir together the milk and butter until the butter is melted.  Add the sugars and stir until melted.  Place the saucepan over medium high heat and bring to a boil, stirring constantly with a wooden spoon. Once the mixture boils, with a heatproof pastry brush that has been dipped in warm water, wash down the sides of the saucepan to remove any sugar crystals that may have formed. Clamp a candy thermometer to the side of the saucepan. Boil the mixture over medium high heat (do not stir) until the temperature reaches 245 degrees F (118 degrees C). (If sugar crystals form on the sides of the pan, wash them down with a heatproof pastry brush that has been dipped in warm water.)

If you don’t have a candy thermometer, watch the color and thickness of the mixture.  The mixture should be foamy as it boils, and darken in color over the space of 30-40 minutes.  It should also have thickened noticeably but still be bubbly and foamy.

Remove from heat and stir in the vanilla extract.  Pour the caramel into your prepared pan and let cool, undisturbed, for at least eight hours, or overnight.

With a sharp knife, (oiled with a tasteless vegetable oil, like safflower), and with a sawing motion, cut into squares or rectangles. These caramels can be stored at room temperature, between layers of wax paper, for several days. Caramels make a nice gift, especially when wrapped in wax paper or cellophane.

Makes about 48 pieces. Preparation time 40 minutes.

Adapted From:

Rosen, Michael J.Baking from the Heart. Broadway Books. New York: 2004.

I made the caramels with great success! I replaced the CREAM in the recipe with LACTAID WHOLE MILK.  I used one cup of milk and 1 stick of butter.  I also increased the amount of brown sugar by 1/2 cup and ended up having to add 3-to-4 TB of cornstarch to help it get to the right consistency.  I forgot to use an 8X8 so it came out too thin, but DELICIOUS.  Definitely  nice and chewy, but not stuck-in-your-teeth chewy.

And my children, even the ones without lactose-intolerance, can’t get enough of these caramels.

 

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Nitty Gritty Fibro Part 2 (symptoms)

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.

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.

Related articles

• Nitty Gritty Fibro Part 1 (littlefallofrain.wordpress.com)
• Men Get Fibro, Too! (fibromodem.wordpress.com)
• Fibro Frustrations (littlefallofrain.wordpress.com)
• The Role of Oxygen in Fibromyalgia by Nicole Cutler (drbradshook.com)
• Fibromyalgia Symptoms (z00lie.wordpress.com)
• Fibromyalgia Pain Is REAL (lifesworkinprogress.wordpress.com)
• What is Fibromyalgia (goldenrule.com)
• Fibromyalgia Syndrome Explained by Jane Thompson (drbradshook.com)
• Why I Prescribe Antibiotics to Patients with Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivity, and Other Autoimmune Diseases (fmnytt.me)

 

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Nitty Gritty Fibro Part 1

Over the past year and a half or two years, I’ve been learning more and more about Fibromyalgia.  As I mentioned in a previous post, I fully believe that it’s not simply a muscular-skeletal disease, but a full-body one.  It’s not simply joint and muscle or nerve pain.  And it’s not just “pain.”  It’s chronic, daily-or-nearly-daily pain.  Some days/weeks/months are better than others, some days/weeks/months are worse than others in flare-ups that are incapacitating.  I know I shouldn’t have to put a disclaimer since this is my blog and I never claim ever to be a medical professional (because I’m not) nor an expert on Fibromyalgia or Autism (because I’m not), I’m just someone who lives with Fibromyalgia and has a daughter who is autistic.  I’m trying to open up a dialogue, and much of what I’m writing is opinion.  As I often do, I express my opinions as statements and will not qualify them every time as, “I believe…” or “I experienced this _____” because that’s a space waster and it’s implicitly implied.  As for the clinical and statistical stuff, I’m hoping that Google will be your friend.  If I’m not entirely certain of a fact and can’t locate the source at the moment, I’ll try to mention that.

ANYWAY.

When you see someone with Fibromyalgia you won’t see bodily damage or a physical deformity due to the fibro.  Because fibro is a sneaky little bitch.  There’s no clear outward sign that someone has Fibromyalgia.  Someone enduring a flare-up or coming out of particularly bad one might appear puffy in the face and lymph nodes, but it’s subtle.  They might be walking carefully, more slowly than usual, and taking extra care not to strain the back and shoulders.  You might notice them rubbing their wrists and thumb joints absently as they smile wearily.  You might not understand why they’re always tired, even if they don’t work 70 hour weeks and their children aren’t toddlers any more.   They might choose the most comfortable, out of the way chair to sit in and appear to refrain from joining in the excitement of physical social activity as much as they used to, not to the point of being rude, but to the point to make you wonder.

What I’ve come across, if I happen to mention my fibro to someone, is a knowing sort of look as if I’ve chosen the fad disease of the moment and am using it as an excuse somehow.  There’s just so much more to it than that.  It’s estimated that only 1-to-2% of the population in Britain (I think) and 3-to-6% in the U.S. has Fibromyalgia.  I suspect more than that, because not enough doctors specialize in it and most doctors can’t agree as to which “specialty” ought to claim Fibromyalgia.  I suggest that rather than fob it off onto Rheumatologists or Neurologists or Internists that include Fibromyalgia in their list of specialties, there be specialists trained to be Fibromyalagists.  I think I just made up a word.  :-)

Bodily systems that are also affected are the immune system, the neurological system, the digestive system, myofascial and central nervous systems, the muscular-skeletal system, the endocrine system, the reproductive system, the muscular system, the eyes.

Tender Points in Fibromyalgia

A great majority of the individuals diagnosed with Fibromyalgia are women.  I believe the statistic is something like 90% of those diagnosed with fibro are female versus only 10% male.  Researchers are unsure as to why, but estrogen versus testosterone might be part of the reason.  In addition, women feel pain differently than men do.  Ah, I found a link that supports that.  I knew I had read it somewhere.  The article I’ve linked to also mentions that women have more tender points than men as well (click here).  

There are 18 trigger points that a doctor can press on to see if there’s a “reaction” of sorts.  It’s like a joint compression being placed on certain areas and those with fibro may feel excessive and jolting pain, bone deep, hitting the nerves like lightning.  When my pressure points were tested, I was shaky and I cried and was lightheaded.  I couldn’t even speak.  I had no idea what the doctor was doing, so when he did it I was just floored (almost literally).  I was shaky for days afterward.  Every single trigger point felt like it was sending me through the Sun and vibrating my bones while doing it.

In general living symptoms are different for everyone and can run a spectrum of mild leading someone to not even seek out a diagnosis of any kind (that was me for years and years) all the way up to severe.  Some people are lucky enough to be diagnosed as young as in their teens or twenties, recognizing early on that something isn’t quite right.  Others, like me, find out much later in their 30′s and have to rely on medical history and memory to recognize the patterns.  Hindsight is 20/20, you know? And of course there are some who are diagnosed later than I was, and some who are never diagnosed at all even though the pain is debilitating.  But that spectrum of symptoms and the stage medical science is in with its research of Fibromyalgia means that it’s much the same way Autism was viewed 15 years ago when people didn’t know what it was and figured it was just a problem with parenting and there was much misinformation about what Autism “looks like.”  There’s still a lot of misinformation out there about Autism Spectrum Disorder but there’s full-fledged research going on… and specialists dedicated to Autism.

Wait, I lost my train of thought.  What was my point?

Oh yes… the research isn’t advanced enough on Fibromyalgia and while there seems to be a lot of information out there ::waves arm around at cyberspace:: and ::waves arm around at blurbs in medical textbooks:: it’s all spread out.  There isn’t one reliable place to go ie. a single group or type of Fibromyalgia specialists.  You might find a pocket here and there where someone specializes somewhat in fibro, but it’s rare.  They’re difficult to find locally and difficult to make appointments with.

When I describe the symptoms that are associated with Fibromyalgia, you might better understand why I think we need something like a Fibromyalagist.  Someone who can work with Neurologists, Internists, Rheumatologists, Psychiatrists, Gastroenterologists, Allergists, Endocrinologists, Pathologists, General Practitioners, Orthopedists, Pain Specialists, Obstetricians, Dermatologists, Ophthalmologists, Fertility Specialists, ad nauseum.  You know, working as a team… but also someone who any of these doctors that suspects fibro but isn’t dedicated to it can refer someone to The Specialist That Deals Only With Fibromyalgia.  The Fibromyalagist who has nutritionists, physical therapists, occupations therapists, counselors, and fibro-friendly General Practitioners on hand for their clients.

I realize this is a lot all at once, so I’ll be having a Part 2 soon.  I promise.  I’ll get a bit more detailed on actual symptoms and how Fibromyalgia is cyclic, and the nature of oh-so-lovely triggers.  Please feel free to ask questions and add comments of your own to this post.  Any contribution is welcome.  There’s also a reason I dragged Autism into this, which I’ve mentioned before in a guilt-ridden blog entry nearly a year ago, but I’ll get into that into the Nitty Gritty Fibro series I plan to continue.

Related articles

• Fibro Frustrations (littlefallofrain.wordpress.com)
• Fibromyalgia: Malfunctions in Two Key Body Systems May Contribute to Disorder (http://www.webmd.com)
• Skin Issues with Fibromyalgia (dailylifewithfibromyalgia.com)
• Fibromyalgia: Information and Treatment by Rich Marsiglia (drbradshook.com)
• Fibromyalgia Symptoms (z00lie.wordpress.com)
• Time to Collaborate with the FibroCollaborative Working Group (fibromodem.wordpress.com)
• Happy FibroMAGIC Awareness Day (fibromodem.wordpress.com)
• Fibromyalgia and Receiving Social Security Disability Benefits (socialsecurityhome.com)

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Fibro Frustrations

#Fibro – Awareness Day (Photo credit: sand625)

People who are not me and are otherwise intelligent are allowed to have brain farts, right? I mean, in theory they are.  That doesn’t mean I can’t be frustrated as an 18/20 trying to squeeze into an 8/10 on a 98* day when my doctor‘s nursing assistant can’t understand a simple request and why I’m requesting it even though I explained it repeatedly.  Maybe it’s because so many medical specialists still view Fibromyalgia as the medical version of the F*bomb? I don’t know.  I just want to smack people sometimes.  I hate people today.

I need a single page in my file from a single appointment showing that we had a particular conversation.  I need her to sign paperwork that she’s aware of certain other doctors I see for chronic issues as well.  I need it to give to a BRS counselor this week to help prove my fibromyalgia and history since my dink gastroenterologist decided to withhold the diagnosis portion of my file, pack up his practice and not have someone take over his practice, and sell vitamins and supplements as his calling instead.  Don’t get me started.  I may have blogged about this already anyway.

I’m so sick of people not willing to help me right now.  I had another doctor tell me that she didn’t feel comfortable going into detail for the paperwork because she’s not the one treating me and didn’t diagnose me for fibro.  What was worse, though, was that she told me that because of her profession her default position on Fibromyalgia is that it’s completely psychosomatic anyway.  I think I started off my schooling of fibro with, “Excuse me, really???”

I can’t find a rheumatologist willing to take me on as a patient either, but the more I learn about fibro and the more I learn about my own symptoms, the less I think it’s really something a rheumatologist can treat anyway.  It’s muscular-skeletal, yes, but it’s a disease that affects the entire body and is immune-suppressing as well.  It affects nerves, joints, muscles, immune system, nervous system, digestive system, neurology, neuropathy, vision, and more.  A rheumatologist can only really treat one aspect of the disorder.  That’s why people go to so many doctors for so many years covering issues with virtually every system before a doctor figures out the patterns and puts it together.

One of these blogs I’m going to have to list all of my symptoms that come and go the ones that I have on a daily basis.

Related articles

• Fibromyalgia: Information and Treatment by Rich Marsiglia (drbradshook.com)
• Fibro Fog (the brain stealing part of Fibromyalgia) (dailylifewithfibromyalgia.com)

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Beatitudine

Oggi è un giorno triste. Le ragazze vogliono giocare sul Wii, mentre la musicaincessante videogioco mi spinge lentamente fuori dalla mia mente. Avrei preferitoavere tirato fuori le unghie piuttosto che avere i videogame in casa tutto il giorno.

Non aiuta il fatto che il maltempo sta facendo il mio corpo ferito. Sono scontroso per cominciare, anche se sto cercando di non darlo a vedere. Ho bisogno di una vacanza inuna bella, calda, soleggiata, isola privata dove ci sono uomini belli portando medeliziosi drink e snack tutto il giorno mentre ho letto libri sulla spiaggia.

Non ci sono telefoni cellulari. No televisione. Non ho figli. Stranieri solo giocandomusica soft, mi divertente e che mi rinfresco. Questo avrebbe dovuto durare un mese, naturalmente. Sarei anonima. Sarebbe stato tutto bello e sarei riuscita a dormire.

Idealmente vorrei essere pagato per questa vacanza.

Qualcuno ha i numeri vincenti della lotteria?

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Eff You, School Vacations!

Transitions.  Transitions suck.  I detest them because my daughter detests them.  Because of our difficulty with transitions on a daily basis I’ve come to despise school vacations with a passion.  My daughter already hates school because she has to transition from sleeping to waking and from indoors to outdoors and from the bus to off the bus into the school.  Granted, she does really well leaving school and coming home.

Just to give you an idea, she also hates leaving home to go just about any place else.  We have to use very strong motivation to get her to go almost anywhere that isn’t home, including playing in the yard outside.  Being in the house is comfortable and safe and stable.  Things don’t change much.  The lights, scents, colors, and textures don’t change at all.  The sounds are within her control for the most part.  Anywhere else, those things are out of control completely.  There are only a few other safe places to her, but we still need to coax her to get to those places most times because of the transition it takes to get there.

You can well imagine now why we have such issues every single morning getting ready for school.  Even if I home schooled her, I suspect we would have this problem.  Although if I home schooled her she would want to play video games all day long and wouldn’t comply with the program, let alone the fact that I would have no idea how to educate her.

When we have school vacation, or even just a day off from school due to a teacher inservice day or a sick day, it throws off our entire routine.  We have our home routine and school day routine, and once we get her involved in the school routine she does get invested in it.  The difference is she’s much  more emotionally invested in the home routine even if she feels as if she MUST follow through with whatever routine she starts.  That’s one benefit of the need for routine when it comes to transitions.

The last two mornings haven’t been pleasant.  Yesterday was simply… tragic.  She gets so distressed at the fact that she’s awake even when she wakes up on her own, and then the thought that she has to get out from under the covers.  She becomes combative over beginning the routine.  She screams insults and edicts, and hurts her own ears and body.  I can commiserate on some level since I’m going through a particularly difficult Fibromyalgia flare-up of my own since Sunday.  Everything feels excessive to me, and I’m having some trouble handling the physical parts of her lashings out.   Today was better for Gracie than yesterday was, and luckily once she does get to school she hops off the bus and actually SKIPS TO CLASS.

She freaking skips.  She skips into her class room with a smile.  This happens most mornings, I’m told.  She’s a pleasure to have in class.  When I have to visit the school for one reason or other and I happen to see her in the hallways she’s always looking happy.  She used to get so distressed at seeing me at school whether it was planned or not that I’d have to take her home with me.  She fusses a bit now, asks if she’s supposed to come with me, but if I say no there aren’t tantrums.  Of course if I do have to pick her up for an appointment she’s ecstatic to leave and that transition is nearly seamless except for the fact that it’s an appointment and not coming directly home.  Unless we’re going to her Auntie Tracy’s house.  Any time we go there it’s a perfectly seamless transition.  Every single time, because her best friend Ella is there.

Anyway, it’s not as if she actually hates school.  I know that when she screams in my face and is kicking and flailing at me that she hates school every morning that what she means is she hates the transition process no matter how gentle we try to make it.  We have some good mornings, but statistically they’re the opposite of good.  Especially after school vacations.

Therefore, eff you school vacation.  Especially Spring Break, since Summer Vacation isn’t very far off and February Vacation wasn’t very long ago and we had to deal with that shit barely two months ago.

Eff you unkindly.

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