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.
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?
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.