Sen. Alexander -- Please Request the National Pain Strategy

June 14, 2016

Senator Lamar Alexander, Chairman
U.S.Senate Committee on Health, Education, Labor, and Pensions

428 Dirksen Senate Office Building

Washington,DC 20510

Re:Implementation Plan for the National Pain Strategy

Dear Senator Alexander,

As your constituent I thank you for your longstanding leadership in addressing the substantial public health crises of chronic pain and opioid abuse, and seek the your continued support in ensuring that the newly released National Pain Strategy (NPS) is implemented in a timely and coordinated fashion. Developed by six federal agencies, along with 80 experts from the medical, scientific, patient and advocacy communities, the NPS is the federal government’s first coordinated interagency plan and roadmap to achieving a system of effective, safe, high-quality, evidence-based pain care in America.This improved system of care is critical to reducing the burden of chronic pain, as well as ameliorating the nation’s opioid abuse, overdose and addiction crisis.

Studies from the Institute of Medicine (IOM) and Department of Veterans Affairs reveal that 4 in 10 American adults and 80 percent of veterans returning from Operation Iraqi Freedom and Operation Enduring Freedom suffer from chronic pain, at a cost of more than $600 billion annually (Institute of Medicine, 2011; Lew HL, et al., Journal of Rehabilitation Research & Development, 2009). Despite this significant toll, plus the fact that pain remains the number one reason that people seek care from a health care provider, our nation continues to invest meagerly in chronic pain research (only 4 cents per patient in 2015); poorly train and educate our health care providers on the proper assessment and management of pain; and provide minimal to no reimbursement for multidisciplinary non-pharmacologic pain management strategies – a key recommendation called for in the new CDC Guideline for Prescribing Opioids for Chronic Pain.

Implementing the objectives of the National Pain Strategy willchange this! The NPS provides a clear and actionable road map that will generate critical population research and health services data; advance prevention and pain care strategies; address disparities in pain assessment and treatment; improve pain service delivery and reimbursement; improve health care provider education and training; and foster public education and communication strategies. Further, the NPS clearly delineates short-, medium-, and long-term deliverables, identifies key federal and non-federal stakeholders, and recommends strategies to measure impact.  

Millions of Americans – many of whom have bravely and honorably served their country – are counting on Congress to see the National Pain Strategy through to completion. We can’t afford to stop now.  As your constituent, I urge you, Chairman Alexander, to help transform the NPS from words on a page to meaningful change in the lives of Americans by sending a letter to the Department of Health and Human Services by the end of June requesting a written implementation plan and corresponding budget from them to be submitted within 60 days of the Committee’s request.

A copy of the National Pain Strategy can be viewed at:http://iprcc.nih.gov/docs/HHSNational_Pain_Strategy.pdf. If we can provide further information or assistance, please contact us by email at info@ConsumerPainAdvocacy.org, or contact Jan Chambers by phone at 801-200-3627.

With sincere appreciation,

Donna L. Marsh

Yvonne J. Clark

I Don't Look Sick...

I have, among many other things, Fibromyalgia. Sometimes it’s just a nuisance. Other times, like now, it interrupts my life. Tonight I have the joy of dealing with intense pain that I can best describe as being like a toothache, only throughout my entire body. I’m also currently enjoying restless legs, muscle cramps, itching and wheezing. So I’m sitting on the couch with my laptop, typing away, instead of sleeping in my soft bed, and that means I’ll be exhausted tomorrow. And exhaustion means more pain. Pain means no sleep -- you get the picture. It’s a nasty, vicious cycle.

But I’ve been through worse with Fibro. I have had flares that were so severe I was practically bedridden for weeks. Only to have people say something like, “But you don’t look sick.”

On a good day I’ll reply with, “Well, at least I’ve still got my looks.” On a bad day I want to shoot back with, “Yeah, well you don’t look like an idiot, but you sure just proved you can’t always go by looks.”

Yep, Fibro can make me bitchy.

The main symptom of Fibromyalgia is pain. It’s a chronic, intense pain that can appear anywhere in the body. Or everywhere. It has been described as a deep muscular ache, throbbing, stabbing, shooting, you name it. Muscles can twitch and jump. There may be complaints of numbness, tingling and burning. Muscle stiffness may be present and is usually quite pronounced early in the morning, making it difficult to “rise and shine.”

The pain can come on gradually or flare suddenly thanks to stress, fatigue, anxiety, physical activity, and even the weather.

Our bodies have 18 tender points, and the old diagnostic criteria said 11 of the 18 had to be positive for pain in order to render a diagnosis of Fibromyalgia. I’m usually positive in all 18. Sometimes just touching one of my trigger points can send waves of pain shooting throughout my body.

There are days when I’m miserable and all I want is a hug, but a hug hurts. It can lead to enormous pain, even a flare. Can you imagine that? Can you understand what It’s like when your child’s hug sends jagged shards of pain rushing throughout your entire body?

But wait… there’s more…

Yep, the pain isn’t enough. We’ve got more. How about fatigue? And I’m not talking about coming home tired after a long day. I’m talking about fatigue so severe that you can’t function. It’s an exhaustion so profound that it disrupts your life. It prevents you from working, socializing, even just functioning.

Combine that fatigue with pain and stiffness, and you have coordination issues. In my case, I find myself falling quite often. I’ve had quite a few close-up examinations of carpeting before, and they weren’t by choice.

Most with Fibro are also lucky enough to have sleep disorders. The most common disorder among Fibro folks is an abnormality in Stage 4 sleep. Bursts of awake-like brain activity cause Fibro folks to wake up numerous times throughout the night, preventing the deep, restorative sleep the body needs. And guess what that results in? If you said “pain and fatigue” then you win the prize!

Me, I seem to be a bit of an over-achiever when it comes to health problems. I have three sleep disorders. Oh yeah, one just ain’t enough. I got the hat trick.

But wait…

Try these on: irritable bowel and bladder, headaches , migraines, restless legs syndrome, periodic limb movement disorder (which includes restless leg), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and more. So much more.

How’s that for a bonus?

Yeah, I may not look sick, but I feel like hell most days.

Wait a minute… did I forget to mention Fibro fog?

I remember going to a doctor once and sitting there frustrated to the point of tears because I couldn’t describe what was going on in my head. Well, I could describe it, but I couldn’t make that doctor understand. I couldn’t get across what it was like to have to search my brain for a word, to forget my sons’ names, to get lost on my way to work because I forgot where to turn. I wasn’t talking about going to the store and forgetting an item on the grocery list. I was talking about such extreme things as forgetting how to spell my own name.

I told the doctor that I knew all of that information was in my brain, but finding it was like searching through an extremely heavy fog, a real pea soup kind of fog that you need a machete to get through. When I heard a few years later that this type of cognitive malfunction was known as Fibro fog, I laughed. Fog was how I had described it for years.

Fibro has strained almost every relationship I’ve ever had. I don’t want it to, but it does. Friends invite me places, and I tell them I’ll try to be there. I want to be there, but my body doesn’t always cooperate. Sometimes the fatigue hits my eye muscles so that I can’t focus. If I can’t focus I can’t drive, and that means I’m staying home. Headaches, IBS, pain -– they can’t be predicted. I can only hope they won’t show up on a day when I’ve got plans, and I can only hope my friends will understand if they do.

So how do I cope? Well, I have good days, and I try to make the most of those. That’s when I try to clean my dirty trailer, and goodness knows it needs it. I try to run my errands, play with the dogs, all of those physical things I can’t do most days. I just have to be careful not to overdo it. Overdoing is bad and can knock me flat on my back with a flare.

And flares are bad. They can last 6 hours, 6 days, 6 weeks or 6 months. The summer I was diagnosed was the summer I lived through a very severe 16-week flare. It was brutal.

I have other coping techniques. I take a lovely cocktail of drugs. I can’t function without them. I stretch in the shower because the hot water helps loosen up the muscles. Hot soaks in the tub with some lovely bath salts, muscle rubs, aromatherapy, massages, naps, walking when I’m able, using a cane when I need it –- they all help.

But there are still times when it takes all I’ve got just to get through the day. My skin is so sensitive that just wearing certain fabrics next to it can set off a flare. I can’t see or think straight. My stomach is a mess. I come complete with twitching muscles and a foggy brain. I just hang on because I know I’ll have a good day soon. I live for the good days.

The best coping tool I have though is my attitude. Yep, I have been blessed with Fibro, but at least I’m alive and kicking, able to enjoy time, on my good days, with my sons, family, and friends. When my legs are restless I say they’re dancing to a tune only I can hear. When the periodic limb movement has my ear moving down to my shoulder or my arms flailing about I just tell folks I’m doing an interpretive piece –- my personal tribute to My Left Foot. If I can’t remember which son is which or I’m calling one of them by the dog’s name, I’m sure to point out that the important thing is for them to know who they are.

Besides, I’ve been through worse than this. Heck, I had a stroke and open–heart surgery before I turned 40. In fact, I got to spend my 40th birthday in the hospital, hooked up to all sorts of monitors and things that go beep, with tubes coming out of my chest, neck and other places they shouldn't and that I won't mention. But that’s a story for another blog post.

Yep, I’ve been through worse than this.

Now if I can just remember where I put the muscle rub…

Life Interrupted

I have Fibromyalgia.  I’ve had it since I was about 10, so I’m not sure I remember how to live without it.  The difficult thing, however, is to remember to live with it.

I don’t recall my last day without pain.  I know that my first pregnancy was almost pain-free, and my second pregnancy nearly was – I mainly battled fatigue during that one, but I honestly can’t remember what it’s like to not hurt, even though I know I’ve had some decent days in the past. 

Most days I wake up, take stock of what’s aching, decide it’s an acceptable level of pain and then get up and go anyway.  In fact, I’ve done that for many years.  It’s how I managed to hold down a full-time job for so long.  But some days the pain isn’t an ache.

Sometimes the pain is like last night, a hot throb throughout my entire body, sort of like a giant toothache.  I sleep for about 29 or 30 minutes, wake up wrapped in pain, deal with the agony for about 2 hours and then doze back off again, mainly out of sheer exhaustion.  I’ve had this pain pattern on and off for years.  I’ve always assumed, since the naps are almost always to the exact minute, that this pain has something to do with my sleep cycle.

Then there’s the pain like I’m having today.  It’s a weird buzzing, like I’ve got static electricity running throughout my entire body.  It’s not the big jolts like you get when someone’s just crossed the carpet in the middle of winter and then touched a doorknob.  This version of pain is non-stop - a constant buzz that is aggravated by anything that touches me.  This is the day when it hurts to wear clothes, so I sit around in frumpy cotton stuff.  I don’t care what it looks like.  All I know is that there are times when soft cotton is the only thing that prevents me from slaughtering quite a bit of the human race.

There are sharp pains, shooting pains, even short and long pains.  There’s just pain, and there are times when it’s easy to get lost in it.  I want to just curl up in bed and cry it away.  But crying doesn’t work.  It never goes away.  I have to challenge myself.

I try not to give in to the pain often.  There are times when I do, when I just stay wrapped in my blankie, cocooned in my soft bed.  Then there are times when I challenge myself.  “Let’s see how long it takes to get to the bathroom.” 

Hey that wasn’t so bad!  Now, let’s see what I have to do to fix some breakfast.  I bet I can do it.  I just have to pace myself.  I try not to think about the entire day, the week, or anything even close to that.  I just focus on the next task at hand.  It doesn’t seem so daunting then.

I also think of those that have it worse than I do.  Yes, I hurt.  Yes, I’m exhausted.  Yes, I can’t even remember where my socks are, but I’m alive, I have a roof over my head, and my sons are healthy and doing well.  I could have it worse. 

Plus, there are a few things in this world that never fail to bring a smile to my face.  My sons are one.  I love those boys.  The Hounds of Hell, heck, even when they’re aggravating the daylights out of me, can usually make me smile.  Titan and his pitiful ears – just picture Jar Jar Binks.  The sound of a baby’s laughter – how can you not smile at that?  Kittens at play and National Lampoon’s Christmas Vacation, they both make me laugh as well.  I guess it’s a just a question of changing my perspective on bad days.

I guess Fibromyalgia may have interrupted my life.  I just have to remember to not let it stop it.  Sometimes I have to remember to live.