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.
When I got pregnant with my one and only child, I was an active and vibrant twenty-something year old. I had a great career that allowed me to travel all over the country. It challenged me at a level I wanted and, not to mention, it paid awesome. Those early years of parenting were difficult as a working parent but so worth it. I have to admit I felt like Supermom. Mom by night and worker bee by day. I thought I had it all. At some point, I switched careers so I wouldn’t travel anymore and could be home every night with my little one. But I still felt like Supermom. I am sure other working parents can relate.
Then IT happened…
I was about to turn 30. My husband and I were talking about having another child. I was comfortable in my new job. I was happy. But then I got a headache. I was never one prone to getting headaches – maybe one or two per year. But this headache was different. It didn’t go away for two weeks. And then it came back for a few more weeks. I knew something was wrong. I knew this was not normal. It took me several appointments with my family doctor and a neurologist who didn’t specialize in headaches or migraines before I realized they couldn’t help me. However, I am a researcher and did my due diligence. I found a top headache/migraine center not too far away in Philadelphia called the Jefferson Headache Center. It took two excruciating years of trial and error – plus a week-long stay in the hospital – to stop my now daily, chronic migraine. I felt like I was in a nightmare until the pain stopped. However, by then, my brain and central nervous system had been rewired to amplify any and all pain while decreasing the neurotransmitters that suppress pain. It was a formula for fibromyalgia that was eventually diagnosed a year later.
Meanwhile, I was still trying to be Supermom to my little toddler. He was only three-years-old and could not fathom what was going on. I put all my energy into hiding my illness from him while my husband and I frantically looked for answers for my health. For those few hours after work that I would spend with my son, I would try to be active and play with him only to crash as soon as he was in bed. It was a strain on all of us.
Despite my best attempts, my son knew something was wrong. The pain was written all over my face. It was programmed into the way I walked, the way I moved. I could not hide it from those close to me. One night I was crashed on the sofa while my son played with his blocks. He came over to me with his Jaffy (an orange, stuffed giraffe he got as an infant and could never be without until he was ten) and place the raggedy animal on my head. “Jaffey will make you feel better, Mommy,” he said. It was so cute and sweet that I wanted to cry. My illness was already impacted my son. I felt like a failure as a parent because I couldn’t protect him from seeing his mom hurting. It was my first lesson in parenting with a chronic illness.
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…
When I graduated from college, so long ago I can’t remember, I was all set to be an adult and build my career. I was lucky to get a dream job at a management consulting company. It was ideally suited for me. I was given projects to work on independently in my little office. I got to travel all over the country and even back to my home country of Canada. I spent some of the best years of my life there. I was making good money and having fun. Of course, this was all before chronic migraines and fibromyalgia and arthritis…
I was the breadwinner in the family. I earned more than my husband and we were okay with that. I had no intention of ever giving up working. I just couldn’t see myself staying home with the kids while my husband supported us. That simply wasn’t me. I was going to be one of those Super Moms who had a career and kids. I could handle it; I was good at multitasking. I had the world’s best daycare center taking care of my son. I knew he was in good hands so I focus on my work.
Then I was laid off and found a new job. It wasn’t exactly what I wanted to do but that didn’t keep me from trying to excel because that is just the way I am. Even with a crappy job, I wanted to do the best job I could. But then I got sick. I started missing work. I used the FMLA to get a reduced work schedule because my migraines were so disabling. However, I remained the breadwinner up until I had to quit because of my health. I could no longer manage to work. It was a devastating blow to my ego. Being part of the rat race was a huge chunk of my identity. Without it, I felt lost. Being a mom is great but I wanted, and still want, so much more. I spent so much money and time on getting an education. I didn’t do it so I could stay home babying my fragile health. I was proud of being able to take care of my family financially. Being out on disability was not my dream – let me tell you it sucks.
To combat my identity crises, I started working with nonprofit groups. I took over the local support group for fibromyalgia and chronic fatigue syndrome. I joined Leaders Against Pain (a part of the National Fibromyalgia & Chronic Pain Association). I am becoming an advocate for those too sick to do it on their own. I am giving back to the community in a positive way. But I still miss working. I still miss the joy everyone has on Pay Day. I am still young enough to have hope of jumping back in.
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 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.
What makes something real? I really want to know (no pun intended). I recently got into an argument about what makes an illness a real illness. So many illnesses start off as being attributed to stress – e.g. lupus, multiple sclerosis, arthritis, ulcers, migraines. If an ailment is not properly understood, it seems to be brushed aside as yet another consequence of stress. Patients are told to buck up and get over it; think positively and carry on. Just because medical technology has not gotten to the point where it can detect an illness does not make it psychosomatic, a figment of their hypochondriac imagination, or (my favorite) depression. Nowadays it is accepted that MS is a real disease. We would never dream of telling a MS patient that they would feel better if they just got out more, or exercised more, or thought more positively. We wouldn’t call someone in the midst of a migraine lazy for needing to lie down in a quiet, dark room to rest. Fibromyalgia and chronic fatigue syndrome both have a large body of scientific, peer-reviewed research behind it. So why do people, including doctors, continue to still insist they are not real? Just because there is not single test to detect either disease, just because there isn’t a cure doesn’t mean these are not real diseases.
The person I was arguing with pointed out that you can find a study to prove anything, that often current research will negate research that is 10 or 20+ years old. That is true to a certain degree. There is a lot of flawed research out there. This is why research is not acceptable until it has been peer-reviewed and replicated. The scientific method states that in order for an observation to be valid, it must be replicable. Also, people will erroneously believe that an earlier study has been disproved (I am talking about medications and supplements here) when abuse of said substance results in different results. Of course the end result with be different if abuse occurs. Duh! Case in point: way back in the 1990s, creatine was considered a wonderful supplement for bodybuilders to take. Now the media treats it like a pariah. Why? Because a bunch of baseball players, among others, abused it to get astronomical results. That doesn’t mean it is a bad supplement to take. Taken in moderation or when a person has a deficiency in it can have wonderful results. Bottom line is when research is peer-reviewed and replicable, it can be trusted as fact. If we doubt ALL research, science will come to a standstill.
The most disturbing part of having a chronic illness is find a doctor to oversee my treatments. Having more than one chronic illness simply increases that search exponentially. If you have bipolar, your get sent to a psychiatrist. However, psychiatrists are trained by pharmaceutical reps (and let’s face it – Big Pharm is the real driver of healthcare these days) to throw medications at their patients. They don’t have time for “talk therapy” or cognitive-behavioral therapy. They no longer seem to connect with those professionals who do. Don’t bother asking for a recommendation to a good therapist. The disconnect is an ever-widening chasm that few patients have the stamina to bridge. We are left to randomly calling therapists out of a phone book or, more likely, from the list our insurance companies offer up. We all know how well that works out, right?
If you complain to your family doc about migraines, they send you to a neurologist. But did you know that migraines comprise a small fraction of what most neurologist know? Most docs don’t even know that there are headache clinics out there that only deal with migraines and headaches. What a shock! How is a family doc supposed to manage our care if they don’t even know what specialties exist in the world of medicine? What are they actually learning in medical schools these days?
Now if you are lucky enough to have fibromyalgia (I know you can’t actually hear the sarcasm behind the word “lucky” in print), the knee-jerk response from most family docs is to send you to a rheumatologist. But wait! Did anyone ever ask the rheumatologists out there if they want to treat fibromyalgia? They only got stuck with it based on an outdated, obsolete definition of an illness that research has redefined into central nervous system disorder. WTF!!!
The bottom line is that family docs are poorly trained to refer patients with chronic illnesses. They pass their patients on to others hoping they don’t come back. Specialists, like most docs, are trained to run tests until something comes back positive for a disease. Then they cut something out or medicate the problem away. They want to cure their patients, not have a long-term relationship with them. And who can blame them? Modern medicine works best for those illnesses that can be cured. It is ever so disheartening to see the same patient over and over again without making their problem go away.
Chronic illnesses are the ugly step-child of the medical community. They require a lot of patience from both doctors and patients (no pun intended). Most illnesses that fall into this category are treated like that Whack-a-Mole game we all played as kids. Every time a new symptom pops its ugly head, the doc whacks it away with medications, physical therapy, or even some Eastern approaches that have slowly crept into our Western medicine. Is it any surprise that the patients keep coming back?
In the perfect world, there would be a cure for every illness. But since that utopia is out of reach, the medical profession should be more open to managing our chronic illnesses.