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.
I am in the middle of appealing Medicare’s decision to NOT pay for my annual wellness visit with my primary care physician. When I called my doctor’s office to find out if they had any idea what the problem was, I was told that there are numerous billing codes that can be used for an annual wellness visit, BUT Medicare only covers a pitiful few of them. What the heck is going on? Doesn’t Medicare realize that I am on disability due to several chronic illnesses (although none of them keep me from complaining online) and need periodic checkups to monitor my health? I take numerous medications that can negatively impact my liver and/or kidneys at any time. Without annual testing, a problem can go unnoticed until it is severe – or deadly. Doctors rely on blood and urine testing to make sure medications are not destroying their patients.
During the same wellness visit, I also complained about problems swallowing and severe heartburn – the type of heartburn that keeps a person from eating just to avoid the pain. I think THAT qualifies for a visit to the doctor. Don’t you? I saw my primary first to find out if I should see a specialist and to get recommendations. Isn’t that what my doctor is there for? If Medicare won’t pay for a visit to the doctor when I am sick, what will they pay for? Incidentally, they had no qualms about paying for my specialist bills. So what gives?
As I said in the beginning, I am in the process of appealing. My first appeal was denied so I am appealing the appeal now. I came to find out that Medicare requested my medical files from that visit for review a few weeks before the holidays, which was ignored by my doctor’s office because the person who sends the files is out until the middle of January. Seriously? No one in the doctor’s office could make simple photocopies and fax/mail them to Medicare? Apparently my doctor’s office doesn’t want to be paid – I keep ignoring their bills in the hope that Medicare will eventually come to their senses and pay for my $224 doctor’s bill. Come on, folks! I am on disability. Do I look like I am swimming in $100 bills? Anyone who collects Social Security (for retirement or disability) knows that every year our benefits cover less and less as inflation raises the prices around us. It is like being frozen at the salary you last made even if that was 10 or 20 or more years ago. Not the best of situations, I tell you.
So, Medicare, when are you going to get off your stingy butt and eliminate all this red tape regarding paying for annual wellness visits?
I recently came to the realization, through the help of some well-informed friends, that there is no governing body in the world of medicine that officially endorses so-called Pain Specialists. Anyone can add that misnomer to their credentials after the most basic of training in the non-existent specialty. Since there is no American Board of Pain Management to oversee training and licensing, patients are left to the mercy of the individual doctor’s educational pursuits. There is no easy way for patients to evaluate the experience or training their doctors have received. There are no standards for pain management that patients can rely on during their appointments. If you have every been in pain, especially chronic pain, this is a very real and scary situation.
Only three specialty boards have a sub-specialty in Pain Management – Anesthesiology, Physical Medicine and Rehabilitation, and Psychiatry and Neurology. They all use the same certification material and test that was developed by the American Board of Anesthesiology dated 2010. However, it is safe to assume that they approach pain management from their own specialty’s perspective. Anesthesiologists will be the first to recommend epidurals while psychiatrist will recommend therapy or antidepressants, and specialists in physical medicine and rehabilitation will recommend exercises and hot/cold therapy. A lot of good research has been done on the different types of pain, pain management therapies, and specific pain-related diseases and disorders in the past four years. I find it disheartening that the educational material might not be keeping up with the progress being made. Also, what exactly are the other doctors learning about pain and pain management? The single chapter in their med school textbook? Every doctor will need to treat patients in pain. I can guarantee that. Pain management should be a required course for all medical students. They should also be required to do a rotation in a reputable pain clinic before graduating.
Now let us discuss pain clinics. They are not regulated. They are not required to have a licensed medical doctor on the premises. I have seen some where a nurse practitioner runs it. There is a growing trend among chiropractors to jump on the pain management bandwagon and call their practices pain clinics too. All too often, pain clinics focus on one single, solitary treatment for a patient’s pain – regardless of the causes. In my eyes, the designation of pain clinic should only apply to a practice that actually takes a multidisciplinary approach to pain management. That means they have a staff who specialize in a variety of pain management approaches – this can include massage therapy, spinal injections, different exercise options, stress management, medication management, trigger point injections, acupuncture, chiropractic manipulation. Pain is too common a condition for our healthcare system to ignore in this way.
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.
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.
On March 26th, 2014, after yet another snow storm, the FDA held a public hearing for patients, their advocates, and others with interest in the treatment of fibromyalgia. For four hours the doctors who work in the Division of Anesthesia, Analgesia and Addiction Products. They were attentive and asked pointed questions. The discussion focused on the multitude of symptoms patients experience, how well (or not well) medications have helped patients, the non-drug treatment options (including holistic and alternative treatments), the side effects and withdrawal symptoms of medications, and what an ideal medication would look like.
Attendees came from all over the country and even from other countries, like Mexico. Patients opened up their souls to the FDA panel, hoping that our desperation for treatments that actually help will be developed. I heard such heartbreaking stories. We all appear to be in the same boat – even though we can manage our symptoms to a certain degree, it does not mean we are living at a higher quality of life. We are treading water and getting nowhere. Fibromyalgia patients have to change their entire lifestyle in order to cope with the limitations of this illness, and that does not even include all the co-morbid conditions we have. The only people I know who do not have another chronic illness with fibromyalgia are those that doctors simply have not diagnosed yet. Fibromyalgia is an opportunistic illness.
In a few months (after additional comments have been submitted), the FDA will release its report on fibromyalgia based on everyone’s comments and concerns. I have high hopes for this document. It can help doctors understand the illness better. It can help pharmaceutical firms fine tune their research. It can help university researchers conducting their smaller research. It can help medical students learn about this illness. It can help politicians understand the illness so they can pass effective bills. It has the potential to improve the status quo like nothing before it.
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.