Posts Tagged ‘Conditions and Diseases’


English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I had my first rheumatology appointment.  It was the intake, so it lasted about two hours.  I went in prepared with a printout of every symptom that I have frequently and my history over the years that may have contributed or could have been early signs of Fibromyalgia (or something else).  I went in with an open mind that I was wrong about the Fibromyalgia thing.  Even so, I started to feel panicky when she started to make comments that she didn’t seem to think that’s what I have because it took me so damned long to even get into a rheumatologist and if it’s not what I think it is then who’s going to treat me?

Then she tested the trigger points.  With everything I know about Fibromyalgia (including the damn trigger points) I didn’t even realize that’s what she was about to test.  I thought she was going to test my spine for MS first since we had just finished talking about.  Suddenly I felt like I was exploding from the inside, and everything was about to fall off of me.  I nearly jumped out of my skin and wished I could leave my body.  I admit it… I cried.  I couldn’t catch my breath from the pain.  I’m in tears right now recounting this to you.  It’s a little more than 12 hours later and the trigger points still hurt.  The doctor seemed surprised that when she just (apparently) gently pressed my trigger points I had such a strong reaction.  It was a similar automatic reaction as when you have your reflexes tested with that little rubber hammer when they hit your reflex point at your knee.  Except for the fact that it’s a combination of pain, intense shakiness from within and without, breathtaking, shocking to the entire system with each trigger point, a bruised feeling in a center point that radiates outward to everywhere, the most intense centralized nerve-like pain… I could go on but I honestly am not sure I can adequately describe what it’s like to someone who wouldn’t feel anything at all when their trigger points are pressed.  The intensity is just… there’s an emotional response to go with the physical.  It’s incredibly scary even once you realize what’s going on.  I’ve had it done once before to diagnose the Fibromyalgia and I knew nothing at all about the disease back then, knew nothing about trigger points or what the doctor was doing or why.  I only knew it left me limp and crying.

I was still limp and crying yesterday but at least this time I knew why.  I pray to God and all the Saints that my daughters never, ever have to go through this if only so that they never, ever have to have their trigger points tested even once.  Sorry, I got a little off track.  So the doctor was a little surprised because I think she had decided that I had something else.  She said,

“Oh! It appears you have ‘some Fibromyalgia!’ Do you know what that is? What that entails? You said there are family members with it but are you educated at all about it?”

LOL LOL LOL again.

She asked me this while I was still crying, and in the physical and emotional mess I was already in I just cried harder.  I couldn’t even nod my head.  She put her arm around me and had me lay back on the exam recliner (not a table because let’s face it, people with connective tissue disorders have a hard time laying down all the way on exam tables).  She gave me some time to catch my breath and calm down.

And then she proceeds to tell me what she thinks she knows about Fibromyalgia and how we’ll go about treatment.  Which is that she can diagnose it, but she doesn’t prescribe medications for it.  She can prescribe therapies and she did… hydro-therapy, so yay for that… and she can recommend to either my neurologist or psychiatrist medications that she thinks would help because,

“It’s a neurological disorder brought on by lack of sleep.”

O’rly? is what I think my exact response was.  Of course it must have been paired with an incredulous facial expression because she repeated what she said with a little bit of defensiveness in her voice and expanded a little bit like she was talking to a child.  Given all I know about Fibromyalgia, that was NOT what I was expecting to hear from a top-rated Rheumatologist.  It felt like the appointment came to a screeching halt.  I was so shocked that I had trouble forming a sentence to tell her what I knew.  I see in a month or so, which means I’ll be printing out a metric shit-ton of articles that I’ve shared here proving it’s not just neurological and not “brought on by lack of sleep” but that there’s actually an issue with the nerves.  That it’s biologically based.  That it can’t be remedied with sleep.  I’ve tried.  Chronic Fatigue Syndrome is part of the disorder.  It doesn’t mean I’m not getting enough sleep.  It means that no matter how much sleep I get my body doesn’t recognize it as “enough.”  There will never be enough recuperative sleep or rather… I will always go through phases where my body doesn’t recognize that I’m actually getting enough sleep.

But then this is part of why I’ve blogged about the fact that I don’t think a Rheumatologist is THE Doctor to treat Fibromyalgia.  We need a Fibromyalgist.  Not treatment between several different doctors… a doctor who specializes mainly/only in Fibromyalgia and related/similar disorders.  It’s my own fault for going into this with really high expectations and hopes.  Fibromyalgia may be one of the disorders that this office can diagnose and treat, and call it one of their specialties, but it just means that they’re qualified to diagnose it.  Anyway, there’s more.

She said that we do still need to figure out if there are any additional diagnoses on top of the Fibromyalgia, and she strongly suspects that there may be.  I have to get an X-Ray for something I forgot why because I haven’t had enough coffee this morning.  I have to get some comprehensive blood tests for vitamin levels and various diseases and disorders.  She’s very bothered by the fact that with all of the easily-broken bones and sprains I’ve had since childhood, not one single person or doctor thought to run tests or figure out WHY these things were happening.  She’s very bothered by the fact that no one ever picked up on all of the various infections and illnesses I’ve had being abnormal and WHY didn’t they encourage me to figure out why they were happening and insist on running tests.  I told her that I’ve actually asked the same questions, I’ve asked my doctors and even begged to the point of ordering my doctors to run certain tests that I hoped would give answers.  She’s bothered that not one single doctor except my now defunct gastroenterologist took some initiative in helping me figure things out and pointing me in the right direction.

This doctor is going to help figure out what diagnoses I may have in addition to Fibromyalgia and/or rule out everything else.  And she said that that’s basically all she can do.  She’s a diagnostician.

So I’m really left with a neurologist who doesn’t feel comfortable prescribing Fibro-related meds because it’s “not her specialty” and a reticent-to-believe-in-Fibro-as-biologically-based psychiatrist to take her recommendations and/or be willing to try various Fibro meds until we hit one that works.

Mixed bag right there.  I’m still a bit of a wreck physically and emotionally, so I’m not really sure how I’m going to feel about the appointment itself for a while.  I do know I was excited as soon as she prescribed the hydro-therapy with a real, um, what’s the word? Not just therapist… damn.  Word recall.  Help.  Eep, it’s past time to get ready for work, but I’ll be thinking on this and probably add a new post for anything I haven’t thought of right now.  Coffee may help with that process.  🙂

But blessed Baby Jesus… I pray that no one ever, ever, ever tests my trigger points ever, ever, ever again.  That sucked donkey balls more than I can ever express.

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espresso-spoonsAfter three years, a rheumatologist has finally accepted my referral.  I can’t even express how this makes me feel.  There’s such a sense of relief.  I don’t think I’ve ever been so excited about a doctor’s appointment except when it was to confirm a pregnancy and see sonogram pictures during my pregnancies.  I’ve had several referrals sent to different rheumatologists but they either weren’t accepting patients or I somehow didn’t have enough Fibromyalgia for them.  

 

I called the doctor’s office and asked if they were taking patients.  The receptionist was actually kind to me, and said,

 

Yes, both of our doctors are taking new patients.  Whichever doctor you choose might depend on your schedule since Dr. C is here from 7:30 to 3:30 and Dr.  H is here from 9:00 to 5:30.  I should tell you that this office does require a referral, though.”

 

Yes, of course they do.

 

I mentioned my previous issues regarding the referral process and my diagnosis.  I mentioned how the doctor that made the diagnosis went about making it, and she said that sounded correct.  Then I mentioned how he refuses to release the records where he made the diagnosis even though it’s in my file because he’s claiming it’s in his “personal notes.”  That he even refused to release the records to the State when they requested the entire file.

 

She said that would present a problem in not having a diagnosis to transfer over with the referral from my PCP, but there was another option.  They were willing to take me on with the referral as if Fibromyalgia is merely suspected and I’m going to see them in order for them to diagnose me with Fibromyalgia and follow up with treatment.  She said a single referral from my PCP would be enough, but luckily another doctor said they would also send my file.  But then she said that the wait list would be three months long and they wouldn’t be able to see me at the earliest until November, and that was assuming that my doctor got the referral in to them right away.

 

Less than a week later this very kind woman called me and told me that the referral had come through, they accept my insurance, and guess what else? Someone cancelled an appointment and they have an opening for mid-September.

 

This felt entirely too easy.  I’m not looking any gift horse in the mouth here.  I’m thanking God every minute of every day.  I can’t wait for this appointment.  I’m  so relieved.  I’m anxious, but in a good way.  I have something to look forward to and plan for where I can put together a list of my most common symptoms and history, and know that someone is going to listen to me.  Like… really listen.  Because this office includes Fibromyalgia in their list of specialties.  This office, both doctors, have excellent (above average) ratings on all of the rating sites I’ve managed to find.  They’re very, very local to my job.  It should take less then five minutes to get there from work so that I can walk if I had to.

 

I’m so grateful that I might bring Dr. H a spoon.

 

 

 

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Clash of the Titans (2010 film)… like, never dude.  I haven’t cried from pain in a while but today did me in.  Something felt like it wanted to rip a muscle right out of my neck.  It was downright scary.  It ended up easing up after several minutes.  I don’t even know how long it lasted.  Thank God my husband was here.  If it didn’t stop being as excruciatingly sharp and painful when it did I was going to beg to go to the ER.

When it did let up I couldn’t hold my head up.  I held up my arm and the pain went down as far as my elbow.  It felt like I had been lifting weights.  I’m still sore as if I pulled a muscle, and there’s a headache now that won’t go away.  I’m not sure if it’s from the neck … um … issue? or the weird almost-thunderstorm that passed by.

I do have to say that Sam Worthington is making my day much more bearable.  Clash of the Titans is on TNT.  Oh shush.  I love him.  He’s my boyfriend.   And if Perseus really existed he would rip that pain right out of me just like he ripped off the head of Medusa.  Okay, maybe he sliced it off.  And I know it wasn’t like a precision cut or anything but in any case he would make things better.  All that demigodliness.   I

Also, maybe it’s just that I feel like giving up today but I really want some crab Rangoon.  Delicious fried Chinese take-out goodness with that uber-unhealthy red sauce.  And some real bacon.  That’s what I want.  If I’m going to be in pain anyway then why can’t I eat like shit? Give up the vegetarianism and healthy food? Which brings me to something else.  After fasting I had my blood test.  I mentioned that before.  What I didn’t mention is that my cholesterol was STILL too high.  In the upper end of normal, but away from being in the danger zone by only 1 point.  My good cholesterols were too low.  My blood sugar was too high too.  I’m a tad frustrated.

Perseus would know what to do.  Plus he would go and get me some Chinese take-out, bacon from IHoP, and he’d also anticipate my desire for Ben & Jerry’s Late Night Snack ice cream.  He would buy me three containers of the B&J’s ice cream so that we could share one tonight, and then I’d still have some for later in the week.  He would also think ahead and put the kids to bed for me so that I wouldn’t have to share with them.  Because he’s a hero.  While I’m at it, he could talk to his father Zeus and see about making this shiznit Fibro go away.  Poof.

And then I would let him play on the PS2 with Manny.

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I’m so over this Fibromyalgia thing.  Can I just? You know, be over it? Be done, be completely done and never look back? I’m sick of the character building.  I’m sick of the whole systemic issues thing.  I’m sick of the whole progressive degenerative disability thing.  I’m sick of the unlikelihood of there ever being a cure thing.

I’m feeling overwhelmed.  Can you tell? Can you just?

I have periods where I feel better than others.  Where my baseline pain is my “normal.”  I may have twinges here and there of something annoying and more noticeable like a migraine or some shoulder pain or back pain, but it’s mostly manageable.

Then I have times like the past week where I have the majority of my days where all I feel like doing is breathing and sleeping.  I can still move.  I can still drive, I think, since I can type this morning.  But it was painful putting my feet on the floor just to get up to pee.  It hurt to brush Gracie’s hair to get her ready for the summer school bus.  It hurt to lift my coffee mug.  It hurts to hold my cane.

I’ll knock on wood, but I’m not too foggy right now.  My plan is to take it slowly today and not to stress out.  I have a lot to do having taken work off last week.  It was a good thing I did, since it was the girls’ first week of summer vacation but it was also a very painful week.

Oh, I would love to put this thing on the shelf.  Wrap it up in a box, put a purple bow on it, and put it on the furthest section in the back of the closet shelf.

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Fibromyalgia  Fog - Cognitive Dysfunction Image Source: "Fibro Affirmations" support page on Facebook

Fibromyalgia Fog – Cognitive Dysfunction
Image Source: “Fibro Affirmations” support page on Facebook

It’s hard to explain Fibro Fog to someone who has never experienced it, or to someone who has never seen it in action.  My office mate at work has seen Fibro Fog do its dirty work on me, and she described it once as if my brain got stuck like a needle on a record.

Repeatedly.

When it happens to me it feels like everything slows down.  I’m painfully aware that my word recall is stuck.  I’m painfully aware that:

  • I’m pausing for too long
  • that I’m stammering and it’s annoying to others
  • that I’m speaking too slowly in order to use the correct wording and
  • so that I don’t stammer
  • that my brain to mouth filter sometimes doesn’t kick in
  • that I sometimes forget what I’m saying in the middle of saying it
  • that I often transpose words and phrases when I speak them or write them
  • that sometimes I have to read and reread something for it to look like English
  • that sometimes I have to ask people to repeat what they’ve just said because although I heard it and recognized it as English, and know that what they said was likely very simple, I didn’t understand a word they said.  And I blame it on not hearing well.
  • that I have to write down everything in order to remember it; that math intimidates me and when math is involved it takes me much, much longer to complete a task.
  • that I sometimes feel like I have ADD, but I know it’s not.
  • that all of these things make me feel anxious, because I feel like I’m missing something important and it’s going to be harmful to someone at work or my children or my husband if I don’t remember what it is.
  • that my coordination plummets, and I can’t do simple things like put a key in a keyhole and my balance (which is already shaky) also plummets.

Luckily, this is not every day.  It happens during migraines.  It happens during very bad pain flare-ups.  It happens during extended pain flare-ups.  Sometimes it does “just happen” although admittedly, if I sit down and think about it, I can usually trace it back to sleepless nights I had due to severe pain during the night.

It’s not just at work when these things happen.  Like sitting with a consumer and trying to listen to an issue they have, and then trying to help them come up with a solution to something and I’m trying to explain my suggestions.  Or I’m going over steps in the process of how we’ll be reaching goals.

It happens at home.  I could be cooking and step away from stove for a moment because what’s cooking can wait for a few minutes.  Except I need to set the timer if it’s not something that can burn or even cook off like a pot of boiling water.  Yes, I can burn boiling water.  It’s not a joke.

When I’m driving, I sometimes forget to take turns even if it’s a place I go to all the time.  I go to the grocery store 3.5 miles away.  I once forgot how to get there at all.  My dentist is even closer than that, and I’ve forgotten how to get there numerous times.  Even though I’ve been going to the same OB/GYN for 20 YEARS I’ve been needing to use my GPS to find her office.   I forget important items on a grocery list or when running a specific errand … even when it’s written at the top of the list.  And it’s the main reason for the trip in the first place.

What helps me? Sometimes…

  • Giving in to a nap.  Attempting to get more sleep.  Except that doesn’t always help because honestly, the reason I’m in the fog to begin with is a particularly bad flare-up which means sleep will be fitful.
  • Heat therapy.  A hot shower is relaxing, and can help with sleep and anxiety.
  • Yoga.  The stretching helps blood flow, and it temporarily helps my mobility.  It also helps get the blood to my brain.
  • Simple sugars from fruit and veggies.  I try to cut down on refined sugars.
  • Walking.  Movement even when I don’t feel like it.  Getting my heart rate up.   It’s easiest to exercise if I can go swimming.  Feeling the water take the pressure off of my joints helps immensely.  It helps relieve pain in a way other things can’t.  Of course, after getting out of the water there’s a heaviness that you feel that’s just… well, it feels like you’re being pulled into the ground.
  • Getting fresh air.  Communing with nature.  Stopping to smell the flowers, as long as I don’t have to bend down.  Because that hurts.  But there’s something to be said for “clearing your head” with some fresh air.
  • Prayer.  Prayer is like meditation, and helps me focus.  I do a daily Bible devotional as often as possible… which means “when I remember.”
  • Get as many fatty acids, amino acids, and antioxidants from natural food sources as much as possible.  I Spicalso take some supplements.
  • Spices and teas.  I find them comforting as well as therapeutic.
  • Having gone vegetarian.  Well, pescatarian.  It’s been nearly a year.  I have trouble digesting meat, and I feel full body pain when I do fall off the meat wagon.
  • Staying hydrated.  Dehydration can lead to a myriad of problems for anyone, and the problems are magnified for the 30+% of Fibro sufferers that get Fibro Fog.

And sometimes nothing helps at all.  I can do everything “right” and still get caught in the fog.  It’s like it’s night time, it’s pea soup fog, and I have my high beams on.   But you know, as I was researching some helpful articles to add to this post I stumbled upon an article that included a link to Fibromyalgia & Fatigue Centers.  I actually found one a couple of towns over from me.  I may just have to give them a call, especially since the rheumatology offices around here won’t even call me back to tell me if they’ll take my referrals from my doctor and if they do, they’re not taking new patients.  Or they don’t specialize in Fibro.

Cross your fingers and toes, and if you’re the praying type…

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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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