Posts Tagged ‘Musculoskeletal Disorders’


This came to my attention on Frday of last week, and I’ve been trying to write something that isn’t using profanities every other word. I’ve had about 60 drafts. [There is a new edit at the bottom of the post]

There’s a YouTube video called Autism Mom FURIOUS is over Steve Harvey’s comments – 3.26.15 – YouTube that brings attention to something despicable, something that she has every reason to be furious over. Something that I’m furious and sickened over.

Steve Harvey used his radio show as a comedy platform (as Sister Odell) to make fun of disabled adults attending Church.

I’m not being overly sensitive or too politically correct. If you were to tell me that, you’re defending his actions and diminishing the lives of disabled individuals everywhere.

I’m not infringing on anyone’s right to free speech to call out a comedian’s, or anyone else’s, behavior and speech. This may be cliche at this point, but if he has the freedom of speech to behave badly and speak in a degrading way about disabled people and laugh like a fool over his own (lack of) cleverness, then he’d better be damned sure to be ready for others to use THEIR right to free speech to call him out.

His words were like acid, caustic and issuing a damaging blow to the disability movement. It tells people in cultures where shaming and being embarrassed about their disabilities and their disabled family members that it’s appropriate and even “funny.”

It tells people that those who can’t always speak against this very same sickening attitude that the world is not even attempting to change to be more sensitive, let alone accommodating, to them.

It tells them that this hatred, being thinly veiled with so-called humor, not only exists in their own homes with family members, but likely at work with employers and co-workers, with neighbors… and out in the world in the media and with other people in the public eye that are looked up to for heaven knows why.

It tells disabled children in school that the bullies who claim they’re just joking, using humor as their mask, will be allowed to get away with it because they’re not really doing any harm. And no one will do anything until someone commits suicide; then everyone blames the child’s parents for not realizing how disturbed s/he was in his disability and why didn’t the parents get him/her the right help or realize how mentally ill they were before s/he committed suicide, when the real issue is that demeaning disabled people and making them Less Than Human is damaging.

Disabilities do not make disabled individuals Less Than Human. They… we.. are fully Human. We’re simply different. And in the words of Temple Grandin, disability (although originally from the point of view of Autism) merely means Different, Not Less.

It’s not unrealistic to expect that some things should be completely off limits as jokes. It’s more than “in poor taste.” We can take poor taste. What Steve Harvey did is cruel, bullying, and calling it comedy somehow gives it free license to say truly hurtful things and it shows exactly how he feels when he sees someone with Autism or similar disabilities that have nonverbal learning disorders and additional conditions.

Calling it comedy means that some people will repeat the so-called jokes because it’s “funny” and of course funny means that people won’t be able to conceive of the idea that it could be hurtful. They’ll repeat it because they’ll have reinforcement that attitudes such as Steve Harvey’s about disabilities and disabled individuals are acceptable and correct. You know, because we’re the ones who are humorless and touchy and overly sensitive.

Those attitudes are not acceptable. Not. Acceptable. But I suppose with Steve Harvey being who he is, I shouldn’t be surprised.

I’m disgusted and sickened. This is the sort of attitude that I feel I’m swimming upstream through chunky peanut butter to end. I’m allergic to peanuts.

No, Mr. Harvey, there’s no way you’re getting out of this with anything less than some very public reconciling to do as well as some reconciliation of the divine sort.

Share. Please. Share that link. Listen to what Steve Harvey thinks about disabled people from his talk show. Then boycott him. If you can’t do that, then write to his producers and tell them exactly what you think about his behavior. Let them know that if you were a fan, you’re not any longer. Let them know that if you hadn’t watched or listened before, there’s no chance in hell now.

More importantly: If you ever have behaved or spoken in a way that’s degrading to any individuals that have any disabilities at all, please stop. Think about the damage you’ve done and are doing if you don’t stop. You don’t know who has an invisible disability that hasn’t come out to you about it, so you don’t know who you’re harming. Be an ally instead of the villain.

#BeAnAllyNotAVillain #FlashBlogBoycottSteveHarvey #BoycottSteveHarvey

[EDIT: I really didn’t want to add what it was he said because I think if you watch that video above, she illustrates what’s wrong with what he said. But I should have included that he joke was made during his morning talk show on March 26th as his character “Sister Odell.” He has since apologized except that his apology wasn’t really an apology. It was a “y’all can’t take a joke” jab.

It started out on Facebook as,

“To everyone, please accept my sincere apologies. It was not my intent to hurt anyone.”

He should have stopped there. That would have been perfect.

He continued with:

“Sister Odell is a made up character, she is not real and my intent was not directed at any other real person. And most certainly was not directed at anyone you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were. DON’T TRIP HE AIN’T THRU WITH ME YET.”

Apology? Do you see what he did there? Exactly what I said he’d do. He excused his behavior. He blamed those offended in the disability community, for being offended that he said offensive things he should have never said. Under the claim that it wasn’t really him but the character he was playing.

When you apologize to anyone you’ve offended, you simply apologize and you don’t qualify the behavior. You don’t excuse the behavior. You don’t turn it around and blame the massive group of people you offended for being rightly offended.

This was a non-apology.

How does one exactly blame the fictitious character that one writes and plays? It’s not MY fault, it’s Sister Odell’s fault for making fun of someone that doesn’t actually exist.

No, it doesn’t work that way. It can’t.

Those “jokes” only barely thinly mask a very real opinion. He wasn’t being sarcastic in the jokes, using them to describe a behavior about disability bigots that he was disgusted with. He was the one making fun of disabled individuals. It doesn’t matter if it wasn’t directed at a specific individual… that makes it even worse because now we also know what his stereotype of a disabled person looks like. They’re all intellectually disabled, unable to speak, unable to control themselves and their bodies, unable to control the sounds coming out of their mouths, looking foolish.

This is what such “comedy” perpetuates. That a thin mask of hate of disabled people and their disabilities, and hatred their audacity to be disabled in public, can be called comedy and therefore not be considered hate speech or discrimination. No, if it’s comedy, it couldn’t possibly be a mask of hate and discrimination.

What saddens me is that there are people commenting on his pages that they are or know someone close to them (like a son or daughter) who is disabled, and not only are they not bothered but they found it funny too. They want him to continue, and they support him and believed an apology was not necessary. That anyone offended had no reason to be offended and basically, we’re all party poopers without a sense of humor.

That’s what couching hatred of disabled people in humor perpetuates. Not acceptance, not a desire to learn more, not even tolerance.]

Advertisements

Read Full Post »


A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

Read Full Post »


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.

[contact-form][contact-field label="People Call Me By This Name" type="name" required="1"/][contact-field label="Here%26#039;s My Email" type="email" required="1"/][contact-field label="Here%26#039;s My Website" type="url"/][contact-field label="Comments and Thoughts About This Post/Blog" type="textarea" required="1"/][/contact-form]

Read Full Post »


Fibromyalgia

Fibromyalgia (Photo credit: Kindreds Page)

Did you know that Fibromyalgia is officially recognized as a disability by the Federal Government?

Think about that for a moment.  Fibromyalgia was officially recognized by the Social Security Administration as a qualifying condition for Social Security Disability Benefits in a July 25th 2012 ruling.  That means that even though there are doctors and other people in our lives that believe Fibro is all in our heads (in spite of the new overwhelming evidence that Fibro has a biological basis and is not psychosomatic) the Federal Government recognizes with adequate diagnosis and proof of diagnosis that you have a disability.  This is extremely important if and when you ever reach a point where you’re forced to stop working due to pain and/or chronic fatigue syndrome as related to Fibro.

Check this out:

SUMMARY:   In accordance with 20 CFR 402.35 (b)(1), the Commissioner of Social Security gives notice of Social Security Ruling, SSR 12-2p. This ruling provides guidance on how we develop evidence to establish that a person has a medically determinable impairment of fibromyalgia, and how we evaluate fibromyalgia in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act.

Titles II and XVI: Evaluation of Fibromyalgia

Purpose: This Social Security Ruling (SSR) provides guidance on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of fibromyalgia (FM), and how we evaluate FM in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act (Act). [1]

Citations: Sections 216(i), 223(d), 223(f), 1614(a)(3), and 1614(a)(4) of the Act, as amended; Regulations No. 4, subpart P, sections 404.1505, 404.1508-404.1513, 404.1519a, 404.1520, 404.1520a, 404.1521, 404.1523, 404.1526, 404.1527-404.1529, 404.1545, 404.1560-404.1569a, 404.1593, 404.1594, appendix 1, and appendix 2; and Regulations No. 16, subpart I, sections 416.905, 416.906, 416.908-416.913, 416.919a, 416.920, 416.920a, 416.921, 416.923, 416.924, 416.924a, 416.926, 416.926a, 416.927-416.929, 416.945, 416.960-416.969a, 416.987, 416.993, 416.994, and 416.994a.

Introduction

FM is a complex medical condition characterized primarily by widespread pain in the joints, muscles, tendons, or nearby soft tissues that has persisted for at least 3 months. FM is a common syndrome. [2] When a person seeks disability benefits due in whole or in part to FM, we must properly consider the person’s symptoms when we decide whether the person has an MDI of FM. As with any claim for disability benefits, before we find that a person with an MDI of FM is disabled, we must ensure there is sufficient objective evidence to support a finding that the person’s impairment(s) so limits the person’s functional abilities that it precludes him or her from performing any substantial gainful activity. In this Ruling, we describe the evidence we need to establish an MDI of FM and explain how we evaluate this impairment when we determine whether the person is disabled.

Policy Interpretation

FM is an MDI when it is established by appropriate medical evidence. FM can be the basis for a finding of disability.

I. What general criteria can establish that a person has an MDI of FM?Generally, a person can establish that he or she has an MDI of FM by providing evidence from an acceptable medical source. [3] A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician’s diagnosis alone. The evidence must document that the physician reviewed the person’s medical history and conducted a physical exam. We will review the physician’s treatment notes to see if they are consistent with the diagnosis of FM, determine whether the person’s symptoms have improved, worsened, or remained stable over time, and establish the physician’s assessment over time of the person’s physical strength and functional abilities.

II. What specific criteria can establish that a person has an MDI of FM?We will find that a person has an MDI of FM if the physician diagnosed FM and provides the evidence we describe in section II.A. or section II. B., and the physician’s diagnosis is not inconsistent with the other evidence in the person’s case record. These sections provide two sets of criteria for diagnosing FM, which we generally base on the 1990 American College of Rheumatology (ACR) Criteria for the Classification of Fibromyalgia [4] (the criteria in section II.A.), or the 2010 ACR Preliminary Diagnostic Criteria [5] (the criteria in section II.B.). If we cannot find that the person has an MDI of FM but there is evidence of another MDI, we will not evaluate the impairment under this Ruling. Instead, we will evaluate it under the rules that apply for that impairment.

A. The 1990 ACR Criteria for the Classification of Fibromyalgia. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following:

1. A history of widespread pain—that is, pain in all quadrants of the body (the right and left sides of the body, both above and below the waist) and axial skeletal pain (the cervical spine, anterior chest, thoracic spine, or low back)—that has persisted (or that persisted) for at least 3 months. The pain may fluctuate in intensity and may not always be present.

2. At least 11 positive tender points on physical examination (see diagram below). The positive tender points must be found bilaterally (on the left and right sides of the body) and both above and below the waist.

a. The 18 tender point sites are located on each side of the body at the:

  • Occiput (base of the skull);
  • Low cervical spine (back and side of the neck);
  • Trapezius muscle (shoulder);
  • Supraspinatus muscle (near the shoulder blade);
  • Second rib (top of the rib cage near the sternum or breast bone);
  • Lateral epicondyle (outer aspect of the elbow);
  • Gluteal (top of the buttock);
  • Greater trochanter (below the hip); and
  • Inner aspect of the knee.
Fibromyalgia Tender Point Sites

Fibromyalgia Tender Point Sites

b. In testing the tender-point sites, [6] the physician should perform digital palpation with an approximate force of 9 pounds (approximately the amount of pressure needed to blanch the thumbnail of the examiner). The physician considers a tender point to be positive if the person experiences any pain when applying this amount of pressure to the site.

3. Evidence that other disorders that could cause the symptoms or signs were excluded. Other physical and mental disorders may have symptoms or signs that are the same or similar to thoseresulting from FM. [7] Therefore, it is common in cases involving FM to find evidence of examinations and testing that rule out other disorders that could account for the person’s symptoms and signs. Laboratory testing may include imaging and other laboratory tests (for example, complete blood counts, erythrocyte sedimentation rate, anti-nuclear antibody, thyroid function, and rheumatoid factor).

B. The 2010 ACR Preliminary Diagnostic Criteria. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following criteria [8] :

1. A history of widespread pain (see section II.A.1.);

2. Repeated manifestations of six or more FM symptoms, signs, [9] or co-occurring conditions, [10] especially manifestations of fatigue, cognitive or memory problems (“fibro fog”), waking unrefreshed, [11]depression, anxiety disorder, or irritable bowel syndrome; and

3. Evidence that other disorders that could cause these repeated manifestations of symptoms, signs, or co-occurring conditions were excluded (see section II.A.3.).

III. What documentation do we need?

A. General

1. As in all claims for disability benefits, we need objective medical evidence to establish the presence of an MDI. When a person alleges FM, longitudinal records reflecting ongoing medical evaluation and treatment from acceptable medical sources are especially helpful in establishing both the existence and severity of the impairment. In cases involving FM, as in any case, we will make every reasonable effort to obtain all available, relevant evidence to ensure appropriate and thorough evaluation.

2. We will generally request evidence for the 12-month period before the date of application unless we have reason to believe that we need evidence from anearlier period, or unless the alleged onset of disability is less than 12 months before the date of application. [12] In the latter case, we may still request evidence from before the alleged onset date if we have reason to believe that it could be relevant to a finding about the existence, severity, or duration of the disorder, or to establish the onset of disability.

B. Other Sources of Evidence

1. In addition to obtaining evidence from a physician, we may request evidence from other acceptable medical sources, such as psychologists, both to determine whether the person has another MDI(s) and to evaluate the severity and functional effects of FM or any of the person’s other impairments. We also may consider evidence from medical sources who are not “acceptable medical sources” to evaluate the severity and functional effects of the impairment(s).

2. Under our regulations and SSR 06-3p, [13] information from nonmedical sources can also help us evaluate the severity and functional effects of a person’s FM. This information may help us to assess the person’s ability to function day-to-day and over time. It may also help us when we make findings about the credibility of the person’s allegations about symptoms and their effects. [14] Examples of nonmedical sources include:

a. Neighbors, friends, relatives, and clergy; and

b. Past employers, rehabilitation counselors, and teachers; and

c. Statements from SSA personnel who interviewed the person.

FOR MORE VISIT THE ARTICLE LINKED DIRECTLY BELOW

SOURCE:

Social Security Ruling, SSR 12-2p; Titles II and XVI: Evaluation of Fibromyalgia (click here) 

 

Read Full Post »


 

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.

 

 

 

Read Full Post »


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.

Read Full Post »


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.

Read Full Post »

Older Posts »

%d bloggers like this: