By Wanda –
Many people who suffer from migraines often suffer from other illnesses and disability, which makes treatment difficult to say the least. Comorbidity is its own curse, as each separate illness demands its own treatment plan. It is not enough to treat just the migraine, just the arthritis, just the scoliosis, just the Ehlers Danlos, or any of the myriad of conditions a migraineur might have; migraineurs and their doctors must determine which illness or diseases they have and look for the least invasive treatments. Each doctor must figure out how to treat not just their speciality, but work with the neurologist and other specialist to find a plan to manage all the symptoms without triggering either the migraines or symptoms of other disease.
There is little dignity in suffering from multiple illnesses, and even less in seeking treatment for them. Comorbid illnesses often leave doctors and nurses feeling the patient is either faking their illness, or faking the severity of it.
Keep in mind, we are talking of specialists — the doctors who are meant to specifically help people deal with rare illnesses and conditions. There is one commonality between all people with chronic migraine and people with chronic illness: when injuries happen, there is no real treatment available to them. When a flare hits, when an accident happens, when the migraine gets out of hand, when the vertigo strikes and causes a fall, there is little recourse and often less sympathy.
Take fibromyalgia for example: when I was diagnosed 25 years, doctors knew very little about the disease and offered only muscle relaxers. Now they use medication to treat the neuropathic pain, which can also be used for migraines in a kind of crossover treatment. One thing they offered about 5 years in to my journey was pain medication — serious pain medication — which triggered migraines. I was diagnosed using the trigger point pain chart. I aced the test. My earliest memories are of pain, and of being told it was all in my head, or couldn’t possibly be as bad as I thought.
(Fibromyalgia Trigger Points, source: MedicineNet)
My next journey into the world of comorbid diseases was scoliosis and the back pain it brought. Rather, I should say, the back pain it explained. As we all know, scoliosis is something you are born with, that gets worse over time — a chronic disorder. In my case, it wasn’t discovered until my college years. Never mind those “exams” you get in grade school, my spine bends differently and doubly. The treatment for scoliosis is physical therapy, braces, muscle relaxers, and dogwood posture. No, seriously, good posture is key to a healthy back according to the military doctors I saw as the defendant of a USMC sergeant. They also gave me a cane, and did regular X-rays of my spine, hips, and knees to track the wear and tear the scoliosis was taking on my body.
From the scoliosis came bulging and torn discs in my spine, as well as spinal arthritis, misaligned hips and knees, torn muscles, and falls — so many falls. Oddly enough it wasn’t until about 5 years ago the falls and joint displacement was diagnosed as Ehlers Danlos Syndrome (EDS). Those three words explained so much that was my life, so much of what is my life, and what my life will become in the future. EDS attacks the connective tissue in your body and makes you “bendy,” which was really cool as a child but not so much now. Practically speaking, EDS means more pain, more injuries, more doctors. This then is the reason for my post today. Along with the physical illnesses, many people with chronic illness suffer from depression, anxiety, and other mental illnesses.
When a normal person has an injury, they go to Urgent Care or the Emergency Department or perhaps their own doctor to get diagnosis and treatment. In the case of many migraineurs, treatment isn’t so simple. First and foremost, any one who suffers from chronic migraines is probably already on some medication — usually a preventative and a selection of “abortive” medications to stop a migraine once it has started. Because they already have medications, the doctors must take in to account what the patient is already taking and what interactions may occur. Take for example my latest visit to Urgent Care.
I fell in my closet (thank you EDS) when my hip went out. It’s known as subluxation. The first complication was resetting my hip. The second order of business was to call the doctor, which I dreaded. As much pain as I was in at the time, with a deep bruise from upper hip to knee and a twisted back, I held little hope for relief. Why you ask? Because I am “complicated.” Doctors don’t like complicated patients. They prefer we all fit in a simple box with perhaps one or two pains or diseases. My primary doctor did X-rays and discovered nothing broken, so sent me home with orders to take Tylenol for the pain. Why? Because I already have a maintenance level of pain killer and muscle relaxer for the various illnesses, injuries, and malfunctions that live in my body.
48 hours later, I could not move without help. A friend took me to urgent care to see if help could be found. Because there were no broken bones, because of the medications I already take, because of the complications of allergies and counter indications, because nothing was broken, my only option was steroids. There are one or two problems with that option: steroids are bad for my heart, and using them for the fall means I can’t use them with the migraines get really bad.
Where in all of this does the shaming come? From the people at the pharmacy who see you pick up huge brown bags of meds, from the student doctors who don’t understand why you need the meds to live a half way normal life, from the person who yells at you for parking in the handicap spot, from the “norms” who see the amount of medication you take and judge you for your weakness, from doctors who don’t know what to give you “because you are on so much already,” from your family who still thinks its all in your head, and worse of all, from yourself because you “should be stronger.” Finally, from your psychiatrist who thinks you are on too much medication and so doesn’t want to give you more, regardless of why you need it.
This is the life of a migraineur, the life of a spoonie. This is my life. We are not weak, we don’t seek out new meds, we don’t even want the ones are on! We are seeking answers and understanding. Next time you see someone who looks “normal” on the outside, but uses handicap parking or a service animal, or takes home large bags of medication, please remember this post and be kind.