Posts Tagged ‘Symptom’

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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English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. References (Photo credit: Wikipedia)

I finally got my doctor to test my thyroid properly.  She did all six panels after the nurse practitioner explained to her why she should.  That’s a whole ‘nother post, but I’ll spare you.  I got the results and it came back as “normal.”  I also had her check for a systemic candida overgrowth, but that came back as “normal” too.  That means that neither of those things are causing any Fibromyalgia symptoms.

A full thyroid panel would be: TSH, T4, T3, Free T4 ,  Free T3, Reverse T3.


The results are discouraging since they’re not what I was expecting, but I also realize that it helps narrow things down.  I’m starting to feel more and more pushed towards having to figure out if I’m sensitive to gluten or not.  A gluten sensitivity can exacerbate my Fibro symptoms, so it’s looking like it’s time to try an elimination diet regarding gluten.  I had success eliminating meat and becoming vegetarian and that that should be encouraging, right?

Here’s another interesting tidbit… I’ve always been aware of this, but a gluten sensitivity can make Autism worse or mimic symptoms of Autism.  When Gracie was very small we tried an elimination diet of gluten that didn’t seem to work but if I’m going to attempt to go gluten-free then I’m going to try to get her to go gluten-free as well.  She gets the so-called chicken skin on the backs of her arms and it bothers her a lot because she thinks it’s ugly.  Then she tries to scrape the bumps off and there’s a scab.

I brought up the idea to my daughters.  Gracie acted as if I said nothing, so there’s nothing new there.  She just wants cake.  As long as she can have cake that tastes like cake I think she’ll be fine.  Juliana thinks it means she’ll never be able to socialize at school lunch or have sandwiches that taste good ever again.  She’s also worried about pasta.  And crackers.  I’d like for her to try it willingly due to her ADHD, but she’s almost 13.  I need her cooperation.  Anna? She thinks it’s unhealthy since we have whole-wheat-everything.  I tried to explain that there are alternatives that are healthy.  I might have to get sneaky and creative.  🙂  That’s sort of the definition of cooking as a parent, though, so now I just have to learn the language of gluten ingredients in the ingredient labels and find some tasty recipes for special occasions.

I have to give it a minimum of three to six months.  Longer if possible.  I’ve read that it can take months to years to rid the body of gluten.  I don’t consume a lot of it in the first place, but that’s a little disconcerting.  I don’t know a lot about going completely gluten-free yet.  I do know that it can be very involved.  Crossing my fingers.

I’m nervous.

[EDITED:  Not gonna do it.  Gluten free just isn’t really an option, at least not right now.  I don’t think I buy into the whole thing for either myself or my daughter/s anyway since we don’t show true symptoms of gluten intolerance or insensitivity.

And also, for what it’s worth, I’m not 100% certain that my doctor was 100% truthful about the Candida results or thyroid results so when I see my rheumatologist for my first appointment at the end of September I’ll be sure to ask her to go over those tests.]

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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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EEG of brain; via

This could be the Mama Bear coming out in me (gosh, it really must be because I HATE the term Mama Bear), but this so-called experiment and drug GRN-529 (article pressed below with link) that supposedly reduces autistic symptoms in mice rubs me completely the wrong way. The article is very careful to refrain from calling  GRN-529  a cure and to state that it’s treating…  no wait… REVERSING symptoms of autism, such as making the mice more sociable and minimizing obsessive-compulsive behaviors.  But tagging it as a drug that specifically reduces ASD symptoms… especially when those qualities are present in so many other different disorders and are so often simply personality quirks in people… it bothers me as a whole.

Of course there’s the whole “messing with the synapses and neurotransmitters of the brain” thing.  Considering these mice weren’t actually given autism, since that’s impossible, but that they were manually given symptoms that’s one of my reservations with this experiment.  I also have issues with the mice being inbred on top of their manufactured “symptoms.”  Maybe that’s a mountain out of a molehill, and I can’t quite articulate right now why that one bothers me so very much, but it does.  I think it’s also a bit disingenuous to claim that it’s not trying to cure ASD when it’s attempting to target the neurotransmitters the way that they would.

Don’t get me wrong here, I’m not against medications when they’re warranted.  I’m not against researching Autism Spectrum Disorders and all of the surrounding issues.  I think part of what’s bothering me is that the more I learn, the more it seems to me that ASD is a collection of neurological differences and disorders.  I believe that at its core, ASD is genetically based and ASD’s affect a wide array of neurological issues.

The behaviors can be so very difficult to deal with as a family, as a parent, and especially the child who becomes a teen and later an adult.  The destructive behaviors in high functioning individuals should be approached on an individual basis.  I worry, I think, that a drug like GRN-529 might end up being something that is “pushed” much the way ADHD medications are pushed for highly active and spirited children that aren’t actually ADHD.  Don’t like the symptom? Drug it up even if it’s not therapeutic.  Let’s make everyone else’s lives easier.  That might sound contradictory coming from me, since we have Gracie (my darling 3rd grader who has Autism) on a low dose of an ADD medication along with her seizure medication.  She’s able to concentrate and work at school.  She’s been better able to follow directions.  In her own way she has commented on her improved ability to focus, and that she likes that feeling.  She has less anxiety while at school because of it.  She has less anxiety about bed time than she used to (granted it’s still there, but not like before).  We’re also in the decision-making process for our eldest daughter regarding her ADHD.  It’s not easy making these decisions and figuring out if what we’re considering tips the scales in “we’re doing this for her and not for us” favor.

This particular bit of mouse research feels a bit misdirected.  I know that the research itself is much more complicated than the article is laying it out to be, but ASD is so much  more than that area of the brain.  It’s so much more than OCD and social awkwardness.  So maybe my feeling is that this bit of research is missing the point more than anything else.

Or maybe I’m over-reacting or misunderstanding or being overly critical or (gasp) all three.

Experimental drug reduces autism symptoms in mice, gov’t study shows – HealthPop – CBS News.

April 26, 2012 1:13 PM
Experimental drug reduces autism symptoms in mice, gov’t study shows

(CBS News) Autism affects one out of every 88 American children and while there are available treatments for early intervention, there is no cure. A new government-funded study has found an experimental treatment is effective at reversing symptoms of autism in mice.

For the study, published in the April 25 issue of Science and Translational Medicine, researchers from the National Institutes of Health bred a strain of mice to display autism-like behaviors. Similar to how children with autism have social deficits and engage in repetitive behaviors, these mice did not interact and communicate with each other and spent an inordinate amount of time engaging in repetitive behavior – in this case self-grooming.

Cue the experimental drug called GRN-529. The drug was designed to inhibit a type of brain cell receptor that receives the neurotransmitter glutamate. Glutamate is typically involved in learning and memory processes and stimulates other areas of the brain and nervous system.

When mice with the autism-like behaviors were injected with the experimental compound, they reduced the frequency of their repetitive self-grooming and spent more time around strange mice, even sniffing them nose to nose. When tested on a different strain of mice, the experimental compound stopped all repetitive jumping behavior.

“These new results in mice support NIMH-funded research in humans to create treatments for the core symptoms of autism,” Dr. Thomas R. Insel, director of the National Institute of Mental Health, said in a statement. “While autism has been often considered only as a disability in need of rehabilitation, we can now address autism as a disorder responding to biomedical treatments.”

The researchers said although most mouse brain findings often don’t translate to humans, the fact that these compounds are already being tested for an overlapping condition strengthens the case for the drug’s effectiveness. This class of compounds is currently being studied in patients with the genetic disease Fragile X syndrome, the most common inherited form of intellectual disability. About one third of patients with Fragile X syndrome also meet criteria for autism.

“These inbred strains of mice are similar, behaviorally, to individuals with autism for whom the responsible genetic factors are unknown, which accounts for about three fourths of people with the disorders,” noted study author Dr. Jacqueline Crawley of the NIMH. “Given the high costs – monetary and emotional – to families, schools, and health care systems, we are hopeful that this line of studies may help meet the need for medications that treat core symptoms.”

Some experts exercised caution with the new findings. In an accompanying editorial in the same journal issue, Baltazar Gomez-Mancilla, executive director of translational medicine neuroscience at Novartis, wrote, “It is too early to speculate as to whether or not autism spectrum disorders can be reversed by small molecules.”

Dr. Uta Frith, a professor of cognitive development at University College London, told BBC News that neurotransmitter problems have long been suspected as an origin of autism, “However, it will be a long time until these findings can be translated for human patients. Tampering with the synapse may well result in undesirable side effects,” he said.

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