Posts Tagged ‘Connective Tissue’


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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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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#Fibro - Awareness Day

#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.

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