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.
As the leader of my local support group South Jersey Connections, I take it upon myself to try to attend any free seminars on fibromyalgia, chronic pain, and chronic fatigue syndrome so I can share the information with my members (many of whom cannot attend due to their health). I have noticed that some brilliant (and I use the term loosely) person create a PowerPoint presentation on fibromyalgia that mainly focused on vitamin D deficiency and aluminum toxicity that can be cured by taking malic acid. This PowerPoint has been distributed so thoroughly into the healthcare community. I have seen it so many times I could recite it by heart.
Last Thursday night I attended yet another FM seminar with the same PowerPoint presentation. I was tempted to simply walkout when the chiropractor/nutritionist started his spiel but decided to NOT be rude and give the guy a chance. He obviously did not know how well-used the slides he was using were. As expected, the actual presentation was the same but, thankfully, the Q&A was more interesting. He really let his knowledge and experience shine through at that point and I was impressed. He had a completely different approach to improving one’s eating habits and dietary changes than the standard one-size-fits-all food pyramid that every nutritionist I have ever worked with uses. He focuses on your symptoms and blood work. He looks for signs of deficiencies in vitamins, hormones, and other areas. He looks to see if you are in an optimal range instead of the default ranges labs use (which are not the best ranges in most cases). He will treat borderline deficiencies through supplements and dietary changes. Having personally tried just about every approach out there (and having a diminished savings to prove it), I felt optimistic.
If you have ever attended one of these free seminars, you know the doctor or healthcare professional tends to offer a free consultation as reward for sitting through their presentation and also as a chance to get to know them better before deciding to be a patient. I usually pass on this offer because of its shear desperate sales technique. However, against my better judgement, I scheduled a free session with this man. He told me he would review any blood work results I brought with me to give example of how he could help me. I expected some basic information about increasing my vitamin D and eating less sugars to lower my blood glucose. I also expected him to try to sell me some of the supplements his clinic carries. Boy was I surprised – and not in a good way!
I show up for my free session and instead of the good chiropractor/nutritionist I met at the seminar, I meet a woman claiming to be a case manager. After quizzing her on her credentials, I find that she has none! She has five years experience working in that office as a case manager which I quickly came to realize was code for salesperson. After taking a thorough history of my symptoms, she explained the science-based nutrition program they use and then goes over the cost of said program. She spent a lot of time breaking down the costs for me with the various payment plans I could use. To do the full program would cost me $1,000 and insurance wouldn’t cover a single penny of it. Who wouldn’t jump on board for that? She was very thorough with the different payment plans and how I could spread the process out so I could raise money in between appointments.
I can’t express enough the disappointment I felt in not meeting with the chiropractor/nutritionist like promised and for having printed out all my blood work results over the past three years for nothing. I was so disheartened that I didn’t even have the energy to complain about the bait-and-switch they had pulled on me. I mean, what is the point? It won’t change how they treat me or any future potential patient, right? They obviously think this sales technique works. I am just so disappointed that healthcare clinics take advantage of sick people in this way. When you are sick, you can’t always think straight (can we say brain fog?). This technique blatantly takes advantage of us.
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.
My mind is a slippery slope. It has always been this way. The more emotional my memory, the slippier it is. Growing up in a dysfunctional family where emotions ran high and negative feelings were the norm has had a serious impact on my ability to remember just how bad things were back then. My brain has done a wonderfully effective job of blocking the negativity. I know things were bad; I know things weren’t right. But I’ll be damned if I know who, what, where, and why. I grasp onto to the stories family members have told me like a drowning women hangs onto a life preserver. I cling to the memories others have because without them I am at a loss. My childhood resembles the Dark Ages of Europe – empty space where we know life was lived but not how. On the one hand, I am blessed to only remember the happy times growing up. However, I can feel those empty spaces sucking away at me like a black hole. Just because I cannot remember first hand what happened doesn’t make the damage any less severe. I live with the repercussions of events I can’t remember. Is this healthier for me? Is it best to keep those things buried in my subconscious? Every time I try to pull those fragments of my childhood to the surface, my mental state suffers. My hold on sanity quivers until it threatens to snap. My new family, the one I married into, does not like it when this happens. And who can blame them? It is not a fun experience to watch a loved one grapple with deep-seeded pain, with their always fragile hold on normalcy.
On the flip side, my brain has compensated for this memory loss by sharpening my capacity to remember the non-emotional side of life – a.k.a., data. Raw data gleamed from books and lectures and seminars. It made school easier for me since I had all that extra space in my consciousness. I excelled at the acquisition of data. It was my thing. It made research (a passionate hobby of mine) that much easier to pursue. But now that chapter of my life is over. My illnesses have stolen yet another piece of my life from me. My memory has disintegrated before my very eyes. Brain fog (yes, it is a real, biological event) has stolen my ability to move data with ease from short-term storage to long-term storage. My ability to retrieve data from long-term storage has failed me too. It makes remembering appointments and to do’s difficult. If I don’t leave written reminders around me everywhere, I lose track of them. They slip into the gaping holes that exist in my brain. And just forget about my formerly large vocabulary and eerily precise ability to spell the most difficult of words. Those are climbing out the window one megabyte at a time. That tip-of-the-tongue feeling we all get occasionally is a daily experience for me. I know I know something, yet I can’t recall it. It isn’t dementia; it is the tortuous reality of brain fog.
Today’s rant was inspired by a missed lunch date an hour’s drive away from home with a sister I only see once per year because she lives in the south and I live in the north. It was a lunch date with my Babcie (grandmother in Polish) to celebrate her 95th birthday. I really don’t think normal people forget important dates like this one. It is no wonder that I feel like I am losing my mind…