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.
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.
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.
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.
I try very hard to give doctors the benefit of the doubt. I know they are trying their best between keeping up with new research, seeing an astronomical amount of patients per day in such narrow time limits, navigating the ever changing healthcare insurance market. It is not easy and I do not envy their job. However, with that said, I do have a bone to pick with them. When I went to my primary care doctor and then a specialist regarding pain in the joints of my hands and feet this past summer, I was surprised that none of them actually looked at my hands and feet. I even pointed out how my toes are getting so stiff that I cannot even straighten one of my toes. It is permanently curled under. Can anyone explain to me why neither of these doctors examined my toe? I was sent for x-rays of my hands and feet. Unfortunately, neither the view from above my feet nor the view from the side of my feet actually shows the curl in my toe. So, was I surprised when the radiologist’s report on my feet x-rays showed no anomalies? No. I also am concerned about possibly having a connective tissue disorder. Some of the diagnostic criteria require the doctor to actually exam patients’ nail beds. Research shows that blood tests are not conclusive with only 70% of cases showing positive blood results. I find it quite disturbing that doctors are so rushed that they skip over this. On another doctor’s visit, I was experiencing excruciating, stabbing pain in my side. Because I was at the gynecologist, she only examined my reproductive organs. She did not probe the area in pain at all. She declared my reproductive organs healthy.
What has happened to our healthcare system when doctors wear blinders and do not realize they are doing more harm by neglecting patients? They do not even realize the harm they are doing. Both doctors I saw only wanted to give me prescriptions for opioid painkillers without trying to first figure out what was wrong. This is very disturbing.
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.