May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…
Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.
So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:
Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.
In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.
I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.
The state of New Jersey still allows healthcare providers to override orders from doctors. Despite lacking a medical degree, insurance companies can dictate to doctors what medications to use on patients first. The insurance companies actually have lists of medications for certain medical conditions (which for some reason usually are chronic pain conditions). These lists are generated based on profits and losses. They are based on financial reasons. They are based on closed-door deals the insurance companies have with different pharmaceutical companies. The one thing that is NEVER take into consideration when generating these lists is what is best for the the individual patients.
You might be thinking what’s the big deal. So a patient tries one or two medications first. Maybe those will work; maybe they won’t. However, think about the current healthcare insurance environment. People are shopping around for the best deals. That means people can be switching plans and companies on a yearly basis. Patients would have to prove EVERY TIME THEY CHANGE PLANS that they have already tried their new healthcare insurance’s approved medications and failed to receive relief from them. We all know the red tape and bureaucracy that exist in large companies. It can take weeks or months to finally get approval to fill a prescription that the patient has had for years. If it is a medication taken daily, the risk of withdrawal is not only a potential side effect of Step Therapy ( also known as Fail First), it is a given. Who will care for a patient going threw withdrawal? The Emergency Rooms. It is far more expensive to go to an Emergency Room that to simply be allowed to take a medication the doctor has been prescribing for months or years.
The other problem with this system is that it supersedes the doctor’s medical opinion with the healthcare company’s financial opinion. The doctor supposedly has years of training and continuing education to back up his or her recommendations. What does the insurance company have? A handshake and price cut from their preferred supplier.
There is currently a bill winding its way through the New Jersey Legislature. It was introduced on June 18th, 2012. Where is it now? It is lounging out with the Senate Budget and Appropriations Committee. It has not even been mentioned since January 6th of this year. How long does it take to provide needed relief to thousands of New Jersey citizens?
I challenge the elected officials of New Jersey to dare to do something great.
It has been four weeks since I swallowed my last pill of Relpax – a triptan medication that works great at knocking out my moderate to severe migraines. I tolerate it well with few side effects. I have so many symptoms with my migraines that it is hard to tell if this medication causes any side effects. It is my most reliable medication for migraines. Sometimes, I am able to treat my migraines with over-the-counter meds targeted for headaches. But the Relpax is my safety net. However, the severe migraines need something stronger like DHE (dihydroergotamine). It is a painful medication that causes a shitload of side effects. Firstly, it needs to be injected into my thigh or stomach. Secondly, it burns like acid. It hurts so much I often have to give myself a pep talk before injecting myself with the poison, because that is what it is – a poison. The side effects are numerous and I need to take other medications with it to counter the more severe one (like nausea and vomiting). I avoid taking this med. I hate it but at least it works 99% of the time. It also keeps me out of the Emergency Room. Before I was prescribed this medication, I would go to the ER so often that I should have gotten frequent flyer miles.
It has been four weeks since I ran out of Relpax and I am not down to one dose of DHE left in my medicine cabinet. Thanks to Step Therapy (a.k.a., fail-first therapy), I have to prove to the insurance company that I have tried their recommended triptan medications first before they will pay for my lifesaving Relpax. I have been there, done that, and have the t-shirt to prove it. Unfortunately, my insurance company has changed every year since going on Medicare three years ago. That means that every spring I have to play the insurance company’s game which often delays receiving my medication for two or more weeks.
It has been four weeks since my Relpax was used up. I am saving my DHE for the God-awful, kill-me-now migraines that I occasionally get. I am too scared to take it because I will be left with few choices when it is gone. I have left numerous voicemail messages at my doctor’s office, my pharmacy has faxed over numerous requests and still I have not received prior authorization yet. The only meds I have are either the worthless OTC drugs or the my last-ditch medication that literally puts me in a coma for two days. My husband insists that someone be home to keep an eye on me during these two days because I have hurt myself in the past by falling down. This is not a situation anyone should be in.
It has been four weeks and I do not know why it is taking so long. What I do know is that there has been a bill introduced in my state legislature that would eliminate this offensive hurdle I must jump every year. The bill has been languishing for over a year now. I cannot even express the joy the passing of this bill would give me.
It has been four weeks and I am scared. I am scared of getting a monster headache that won’t go away, that will entrench itself and require going to the hospital. I once had a migraine for two years. That scares me…
Today is Fibromyalgia Awareness Day. Due to my involvement in the National Fibromyalgia and Chronic Pain Association, I was urged to send a request to my governor – the infamous Chris Christie – requesting he sign a proclamation declaring today Fibromyalgia Awareness Day for the entire state of New Jersey. To my delighted surprise, he signed it.
Fibromyalgia is a disabling illness that affects about 2-5% of the population in the U.S. and around the world. It is a central nervous system disorder that causes sensitivity to pain, central sensitization, chronic fatigue, sleep disturbance, stiffness, cognitive dysfunction, bladder and bowel problems, migraines, and more. Fibromyalgia rarely occurs in a vacuum; the vast majority of patients will eventually develop other health issues – e.g., lupus, POTS, arthritis, spinal problems, EDS, connective tissue disorders, RSD, etc. I consider fibromyalgia to be an opportunistic disorder. It will heighten the symptoms from any and all of the other health problems we have. It will make the pain worse; it will make the brain fog more pronounced. That is why it is important for patients to get all of their health issues under control.
No one chooses to have fibromyalgia. It is not something to aspire to. It irrevocably changes your life. You have to cater to its needs constantly by pacing yourself during normal activities. You have to take more frequent breaks in order to avoid a flare up. Things you once took for granted now have to be planned well in advance. You want to go food shopping? Then you have to avoid all strenuous activity for the entire day. You have to plan it around other people’s schedules so they can go with you because you can no longer lift heavy or awkward items. Some days you will need to use a cane just to be able to walk the aisles in the store. Some days you will have to swallow your pride and use one of the electric carts provided by the store. You will have to endure the stares from other customers as they see a relatively young person who does not appear sick using the electric carts that are usually used by the elderly. Some customers might even come up to you and scold you for it. It is not easy looking healthy on the outside while your body is a mess on the inside. If I wore my illness like a dress for all to see, I am convinced people would look away in disgust.
For all those suffering from Fibromyalgia, this is your day. Awareness is key to managing this illness. We need doctors to understand us and we need the public to not shame us.
According to Wikipedia, chronic pain is
“pain that has lasted longer than three to six months…Chronic pain of different etiologies has been characterized as a disease affecting brain structure and function.”
When pain hangs around our bodies for too long – i.e., past the time period of normal healing for the original cause – it starts to change the central nervous system. Pain receptors go into overdrive while pain suppressors go on vacation. MRIs and fMRIs have clearly shown that the brain processes pain differently once it passes over to chronic pain.
If chronic pain is a disease, then there is a list of symptoms that go along with it just like any other disease. The biggest and most disturbing of symptoms is brain fog. It can cause difficulty remembering words. There are times when I am talking and have to describe the word I am searching for because I can’t remember it. This is frustrating to no end. The frustration can then make my anxiety increase which then makes remembering words even harder. It is a viscous circle. Short-term memory can also be impaired. The other day I was talking with my husband and we agreed I would go to the store to pick up a few things. Fifteen minutes later, I still had not left and he was perplexed. When he asked me why I hadn’t left yet, I could only stare blankly at him. I could not remember the discussion we had just had! Not only is this embarrassing for me, it is also difficult to explain to my husband. There are no visible warning signs when my brain is not working. I can’t even tell when I am impaired, much like someone who is intoxicated not realizing they are too impaired to drive.
Speaking of driving, brain fog loves to mess with me during this activity too. Although I am a safe driving, I will get confused as to where I am and where I am going. There are times when I am driving that I cannot recognize the road I am on. I will know that I am on the correct road, but none of the surrounding look familiar. This is easier to ignore than the other times when I actually get lost. I have learned to take the same roads over and over again without deviation because taking a “short cut” will usually end up getting me lost or turned around somehow. Night driving is the worse because so many visual clues are hidden in the dark. It is to the point where I have to rely on my GPS to get me where I want to go, even though I have been there many times.
Explaining these limitations to others is difficult because both the chronic pain and brain fog are invisible. No one can look at me and see my disabilities. They see a perfectly normal-looking, almost-39-year-old woman. They see a healthy-looking mother (unless it is one of my days when my legs don’t want to work right so I am limping or using my cane). I rarely appear disabled so that when I act it, people are surprised. Even I can be surprised at my body’s defection from normalcy. It can feel like a separate entity from who I am. Some days I have to wrestle for control over it – and I don’t always win.
According to statistics recently released by the Center of Disease Control, the number of middle-aged women successfully committing suicide has TRIPLED in the past decade. TRIPLED! How could this happen? My opinion is that women are using more irreversible means than they used to. Men have always had a higher suicide rate than us mere women because they are more likely to use a violent means to their end. Men are more likely to shoot themselves, use illicit drugs for overdose, or use moving vehicles (cars, trains) to do the deed. Women, stereotypically the more passive, tend to slit their wrists (which is really not an effective form of suicide after all) or swallowing pills. The vast variety of medications now available is staggering. We can take our pick and simply overdose on them. Does that mean these drugs should be more restricted or taken off the market completely? NO! It means doctors need to pay more attention to the mental health of their patients. A patient who runs out in tears is a definite warning sign. A patient who leaves the Emergency Room is as much pain as when they walked in is another omen of bad things to come. The most vulnerable time for patients is when they fail to receive adequate care for their severe symptoms (especially chronic pain).
I doubt these patients leave the ER or the doctor’s office thinking, “Hey! Why don’t I show this doctor I mean business and kill myself.” It is not that simple. The CDC estimates that up to 70% of all overdoses are accidental. How could someone possibly kill themselves by accident, right? Image coming home after a frustrating doctor’s appointment. The doctor listens to you complain about the migraine you have had for the past week and gives you a prescription for a new abortive medicine. You are so thrilled you immediately get it filled. But when you take the medicine, you are still in pain a hour later. So you take another pill. You eventually start taking every pill you doctor has ever prescribed you in the hopes that this mother-of-all migraines would simply leave you in peace. By this time, you are groggy and brain fog has set in. You no longer remember what you have taken and how much. What do you think happens next?
In another case, you leave the doctor’s appointment with a script for physical therapy but your back hurts you now. You can’t wait for weeks of PT to help you gradually improve. You want relief now! So you go home and taken a few Tylenol or Aleve. You are still in pain later so you take more. You start off taking 2 or 3 pills at a time. By the end, you are taking a handful at a time but you are in too much pain to monitor what you are doing.
That, my readers, is how someone can accidentally kill themselves without even realizing it until they pass out. It is not a pretty picture.
Sleep can be such an elusive friend. We all need it to recharge our bodies and spirits. In fact, it is only during deep sleep that our bodies can repair the damage they have sustained during our waking hours. But what do we do when our friend becomes our worst frenemy? You know what I am talking about. Those restless nights when you would give ANYTHING for just a few hours of blessed, restorative sleep. Watching the clock all night is not a game we like to play. Tossing and turning, restless legs are not part of our exercise regimen. But some nights, that is exactly what it is. Some nights we have to simply grin and bear – stay calm and carry on.
Then there are the mornings. Personally, I have my best sleep between five and eleven o’clock in the morning. When everyone else is starting their morning routine of getting up, showering, going to work, I am achieving that perfectly refreshing level of sleep I craved all night. I have tried resetting my dysfunctional sleep clock, but it fights me tooth and nail every time. If I try to do anything in the morning that does not involve my bed, my body will rebel. And guess who pays the price? Me, of course.
Once I fall asleep, I am loathe to get up. Whether I am in bed getting my morning sleep or napping on the sofa early in the evening, I hate to wake up. There are numerous factors keeping me soporific. The first is that I am normally in the midst of dreamland when my alarm clock tries so desperately to wake me up. Dreams, for me, are an escape from my tedious life of chronic pain and endless treatments. I never have pain there; I am an active adult running around without a care for my health. I feel normal, like my old self when I am dreaming. Who has nightmares when their waking world is filled with pain – every day, day in and day out. If I could, I would stay asleep forever. My dreams allow me to take the much needed vacation from my life. As I float my way to the surface of consciousness, I am faced with the physical pain. Is it any wonder that I often choose to dive back into my dreams? The pain in my hands and feet are always there to greet me. They faithfully stand by me through thick and thin. Such are the frenemies that haunt my waking hours.
When I was younger and taking my first steps into adulthood and real-life responsibilities, I had a vision of what my life would be like. It wasn’t a set-in-stone plan with every minute detail laid out. It was a living vision of things I wanted to do – walk down a charming street in Paris, visit Scotland where my ancestors are from, see the Colosseum in Rome, hike in the Swiss Alps, go camping with friends, share my love of playing sports with my children, have two or three children, be a cool grandparent who could actually still do things with her grandkids. However, some things just aren’t to be. Most days, I can live with this. I can focus on the positive things, things I can still do, things I appreciate more because of my illnesses. But then some days… it all hits me like a truck load of bricks, repeatedly. This past Sunday was one of those days. I was at my son’s soccer game watching all the kids running around and playing before the game. The players’ siblings and parents were on the sidelines kicking the ball around, throwing a ball back and forth. Some parents were talking about how much they enjoy coaching the younger kids in a variety of sports. I confess – I am jealous. I always saw myself as the the parent who would volunteer to coach her kids’ sports teams. I would play soccer or basketball in the backyard with them. I would take them down to the park and play tennis with them or roller blade around the neighborhood or ride our bikes together all around town or at the park with the bike paths. There was so much I wanted to do with my children. But I can’t. I don’t dare to even try on the best of days. I have learned I last all of five minutes before the fatigue hits or the pain kicks in. Not only that, but I only have the one child – my pride and joy. My health got in the way of having any more. My husband and I kept waiting for me to get better before having more. Now my son is almost 12 and that ship has sailed…
I watch my son and husband play in the backyard and the guilt and loss of not being able to join them is like a knife in the heart. I know I should be grateful for what I have and what I can do, and I am. But there are the days when the glass is half empty and leaking fast. I am not the person I wanted to be and that hurts more than any physical ailment. Regret is like that itch in the middle of your back that you just can’t seem to reach in order to scratch…