I love this quote: The world breaks everyone and aferward many are stronger at the broken places
Because with chronic illness we endure a lot of pain and illness and suffering but we endure and in the end we know about pain, illness and suffering. Challenges happen to us all and we are stronger for surviving them. And we learn a lot about ourselves and others in the process. Admittedly over the course of my illness I would say I was completely broken by it twice and after the first time I was definitely stronger for it and after the second… I’m still working on it. By that I mean I had a dark bout of depression when I was 18-19 caused by all the undiagnosed pain and other symptoms. I conquered that depression myself with some serious changes and effort and went on to succeed. In aug 2010 when the chronic migraines became too much for me I tried to kill myself, and after that I was stunned and disillusioned at how indifferent doctors are to that, how nothing changes, but I changed, I felt different, it was a profound and important event in my life. But I’m still working on all that. Dealing with acute chronic pain in new ways and such. Being able to talk about my life is a good think… I might just be one of those high statistics.
My story is rather long and boring really and likely resembles the story of other people with Fibromyalgia because it takes years upon years to be diagnosed and so we spend a great deal of time being tested for many, many things and just trying to sort of cope as we go along. Unlike some the syndrome did not begin with an accident or illness to trigger it for me, it just sort of developed as I got older. I suppose you could say I had some symptoms quite young but I would not say they were problematic until I was around twelve. Then the fatigue, insomnia and aches were becoming noticeable… as was my lack of attendance in school. Sometimes just to ‘catch up on sleeping’. I always remember being tired and yet never being able to sleep… that ultimate contradiction. It was a progression from there. And more symptoms.
Different doctors. Different diagnosis. Hyper-mobility with chronic soft tissue pain. That sort of thing. By the time I was in University it was significantly worse. But at least I could intentionally choose courses that did not start in the morning, at least after first year. I learned all about cognitive dysfunction in university. I did not know the cause of it. Did not know a damn thing about it, but I knew it was there. I knew my body was failing me, but it had failed me for years and now my brain was failing me… and I held that to be precious above all else. But I prevailed. I learned to do something I had never needed to do before… study, and take notes, and learn new methods of studying that enabled me to absorb information, and new methods of taking notes. And editing, and more editing. I was diagnosed in during this time in my life, but hell, by they anyone could have diagnosed me with a simple checklist. All over pain: check. Fatigue: check. Unreshreshed sleep with other significant sleep issues: double underlined check check. IBS: you becha check. Migraines: frequently checked check. Fibrofog/longterm memory problems/short term memory problems/working memory problems/uncertain there is a brain actually present and accounted for problems:check? 100 symptoms… all accounted for mostly And that is why I like the quote above. This time in my life over and above any time in my life I feel like I was victorious. My freshman year nearly broke me with all the pain and fatigue and the spike in symptoms. I actively chose to decrease my stress to reorganize my thoughts to be more positive and effective and get back up… and go forth and conquer those books. And I did. And it was awesome. And I have the student loan debt to prove it. It was damn difficult. Physically I was on a downward slope and I sure didn’t know at the time there was no bottom, but it didn’t matter, because emotionally I had battened down the hatches and mentally I had fortified my mind. And I had good friends, my brother, and a nice new boyfriend as a pretty awesome support network.
So yeah fibromyalgia. What a mouthful it was. I already knew it was the diagnosis before I walked in the room. By then my father had been diagnosed with it. And as I said it was pretty obvious. Unless it was one of the similar conditions. It could only be one of a few things. And so… what to do? According to the specialist at the time… nothing. Keep in mind that was over ten years ago. Man that makes me feel old. Anyway, he said I was too young for medication. I just needed to exercise and such but he never told me what sort of things to do. It’s not like I wasn’t already walking to school every day, walking the dog, rollerblading and so forth. These things by the way were extremely difficult. Sometimes the twenty minute walk to school took about fifty minutes and it was not a pleasant forty minutes. I tried certain exercises for muscle toning and it was insanely painful. I had no idea what to do and what not to do. And nowhere to get guidance from. So I just continued to cope as I was. And the flare ups of pain… such as chest wall pain for one job could be extremely intense. But that was how I learned what not to do. Also how I learned what jobs I was incapable of doing. In other words I learned all my coping skills the hard way. Specialists really sucked back in the day. And doctors sucked too, some still do. One back then, when I was getting those severe chest pains, which just got worse and worse because obviously I kept going to work and doing what caused them to get that way… told me he did not believe in FM. So that was that. He did not even look into the chest pains. Which my regular doc looked into and it was costochondritis but was so damned aggravated it took six months to stop the pain. Nasty that. There is a lot of frustration with an invisible disability when it is so invisible doctors don’t even treat it. So much that you hesitate to mention it after a while… which is not good at all. But that is what happened with me for years and years. Doctors knew I had it but I rarely mentioned anything unless it was significantly worse than usual because they were indifferent to it and did not actively treat it. I felt like I could just deal with it. Because I like being stoic and in denial like that. I am woman, hear me roar *and silently screaming in my head*
As such it was not treated at all. Period. The comorbid migraines I mentioned got worse over time and became chronic. They got insane in the brain chronic. Maybe because of the FM I was always sleep deprived… maybe four hours of sleep a night. And then Lots of sleep on the weekends to ‘catch up’. I had gotten my degree and went on and received my Masters. During my graduate studies the migraines and FM combined were stressing my ability to cope. The pain alone was making it very difficult to concentrate and focus. The methods for studying and researching I had developed for my undergraduate studies were not sufficient because with constant migraines I could not think straight… I would ‘think in circles’ and just could not comprehend things well. Literally would sit in a class and listen to a prof and not understand what he was saying I was in so much pain. (now I would just have a lap top and record it) I wanted to go for my Phd but I knew I would not be able to function at that level. The migraines doctors took seriously by the way and were just beginning to treat but they were affecting my ability to focus and think even more. So I made the difficult decesion not to persue my academic career (this was profoundly painful because since I was younger knowing my physical pain all I ever wanted to do was find I job I was passionate about- and I had- but the pain and the cognitive impairments took it from me) and found an alternate career I thought I could maintain. One I currently struggle to maintain. I have been working in a bank for seven years now. Struggling just to keep the job. I’ve had four or five short term leaves already… am on one now again. I can’t function with the amount of pain I am in but don’t know if I will ‘qualify’ for long term.
Now while my neurologists tried every drug imaginable to try and treat my chronic migraines, a difficult task when I have such poor quality sleep and am already so sensitive to light and sound, HE mentioned a drug for fibromyalgia as a Migraine preventative that might also help treat the FM..
And that is my story. How in a very round about way my migraines led to a medication called Lyrica that actually helps for my fibromyalgia and does nothing for my migraines. It helps moderately since I can’t be on the normal dose, but well enough to get some relief and no significant flares of pain which is nice. Point is, it is very important we stand up for our own treatment with doctors. I did develop my own coping strategies and I did research all I could about FM and joined online support groups… but I certainly did not get any help from any specialist, pain clinic or doctor I can tell you that. I was really far too passive about it. I think because they knew of treatments and had knowledge about migraines they felt comfortable trying to help me with them and at the time I was fine with that because my migraines were and are a very serious problem… they are too frequent for me to actually be able to function. And frankly as a second part of my story, it is a crappy one, because I am crippled by pain at the moment and learning new strategies to cope with it. A learning process I assure you. But FM is the foundation of my health problem, linked to the migraines and linked to the triggers and having my doctor ignore that is hardly a good thing. You want someone to help you with ideas and to be proactive. Not necessary a drug pusher… but to have knowledge and help you with solutions to all the problems associated with FM. Not just the pain, but all the symptoms and your overall wellbeing.