What Makes 'Me' Different?
When I was 3 years old I started Sleep Walking and having Night Terrors. At 10 I got my first Migraine. By 15 I had Irritable Bowel Disease. I have had Cognitive Issues my entire life; my friends and family all knew me to be this accident prone, ditzy girl but I always knew in my heart that something was deeply wrong. I brushed off each life-jolting incident after life-jolting incident and blazed forward with stronger armor and more knowledge every time. Soon, Sensitivity to Light and Sound, muscle weakness and Chronic Fatigue led to a string of injuries, and by the time I was in my twenties my body was under siege. Each time I was prescribed a medication I would diligently research it, with every diagnoses I would retreat to the internet and library to research my ailment. I knew how my body worked inside and out. And I knew something was wrong but I didn't know how to approach a doctor and say, 'Hey Doc: I have had every dysfunction you can imagine, I am exhausted and I feel so much pain in my body and I know that others can't possibly feel this sensitive in their bodies too...right??" It sounded so normal and described my reality but I knew once the words hit the open air that I would seem like a crazy person, especially once they opened my HUGE chart. I feared being told I was just accident-prone, or worse, making it up - because after 20-some-odd-years of injuries, illnesses and major issues, I could sense my physician growing weary with every new situation and medical drama... the medical nightmare that was My Life. I used to lay in bed and pray for my body to be normal. I ate well, I exercised, and I was excited about life - I wanted a functioning body so badly. My body was, and is, the only thing that has ever held me back. I tried to hold out seeing my doctor if at all possible, and learned how to treat many of my ailments using a number of strategies at home. I couldn't afford to see a doctor for every UTI, Yeast Infection, Sprained Ankle, Migraine (boy did that change - ended up needing specialized help, more on that later), IBS, Until...
I began to see knots covering my ribcage and felt deep pain radiating throughout my body..sprawling, spreading, shooting from my shoulders to my hands, I just thought "F ME.....What is wrong now"....I knew that I had a problem much worse than in years' past. It was painstakingly difficult to describe it all to my doctor -- how do I find the right words to describe what I am feeling and should I tell them about my Migraines, my IBS, my Sleep Terrors every night? How much is important? I certainly didn't want to come off like a complainer because I knew from experience that my sensitivities to pain and other stimulations had left me labeled as a 'Bubble Girl', a complainer even in some eyes. I wasn't willing to be written off this time. I was in hysterical pain and needed an answer, a solution, relief to my pain.
"Sometimes it feels like stabbing pain and sometimes it is a deep pain inside me, and sometimes my skin is so sensitive...I am so sensitive a hug just kills me...." I spent a year going from Specialist to Specialist, explaining this over and over again. With each negative test result (as in all Fibromyalgia patients, unless you have an underlying or other un-related illness, your test results will be totally normal), I was getting more and more lost in the health-care-system. Being called everything from insane to a drug addict to depressed, and then shipped off to another Specialist. Why? Because Fibromyalgia has only just starting being accepted in the Medical Community, due to the lack of evidence and lab diagnostics to test for it. Even with the uptrend in acceptance of FMS among physicians, there are still some who are completely unaware of the illness or who believe that 'Fibromyalgia is not real and those who simply are not well trained in how to treat it. It was not until I was examined by a compassionate Physiatrist (ie: doctor who treats pain) that I finally came upon the answer I was long looking for.
FIbro-my-what? I wondered, when I read the name during my first online research sesh. In true Lala fashion I went home calmly, I called my mother and we both began our due diligence of researching and reaching out to trusted healthcare professionals. I finally had an answer. Although it was years since my ribs inflamed with knots, which led me on my quest for answers, I felt as if I had been looking for an answer my entire life. An answer to why I was different. Why, when I put my elbows on my desk as a kid, did it hurt so badly (and still does). Why, when I would I would lay on the gymnasium floor to stretch during P.E Class, would my hips ache, and throb incessantly. Why, as I grew older did my body seem to ache and get stiff, despite how badly I wanted it to stop so that I could live a normal life. Why was I too tired to do anything when I hadn't done anything at all (answer: Chronic Fatigue Syndrome - one of the lovely Associated Symptoms of FMS). Why, all of a sudden did my ribs pop up with giant knots? Why did I begin to have knots all over my body? Why did my entire body zing with shooting pain that bounced around inside me like a pinball machine? Why was any touch or pressure absolutely un-bearable, forget trying to knead out the knots on my body - I just wanted to put on clothing! Why did my shoulders hurt, too, and my elbows, and my knees, and my hips and butt and back and hands and ...and...and..WHY? Fibromyalgia and All that Comes With It. That's Why. What came next for me was year after year of trial and error. Finding the right physician to treat FM is often as difficult as diagnosing it. Your treating physician needs to be compassionate, extremely knowledgeable if not a Specialist in FM/ Pain Management or Rheumatology. Also important is that your treating physician is located near your home so that if you are having a flare-up and they must see you in order to rx something outside of what you take ordinarily (in order to break your pain cycle - this is often called a Rescue Medication), you can easily get in your car and to their office for an emergency visit as opposed to going to the ER which is very expensive. If you do ever have an exceedingly awful flare-up where it comes down not to seeing your physician for a refill of Rescue Meds (which you fill at the pharmacy and take at home when you experience awful flare-ups), but more comes down to needing immediate medical intervention then you must go to the Emergency Room where they will determine how to treat the emergency-level of painful flare-up. Lastly, because Fibromyalgia is a muti-faceted illness it is critical that you put all of your treating physicians in touch with one another (Primary Care Physician (known as a PCP), if you have a Headache Doctor, you may see a Pain Management Doctor or a Gastroenterologist and so on) as they should all be in touch with what one another are prescribing.
FMS is often met with critics due to the fact that there are currently no FDA-Approved laboratory (blood, urine and so on) tests to diagnose our condition. That said, with such a darkly painful condition and grim prognosis (....remember now, for those of you who do not have it...this pain is all day & every day, some believe we are not even ill and there is no cure...) I strongly believe that in such circumstances you have 2 choices; cry about it or laugh. With the prospect of having this illness the rest of my life --- I damn well better be able to have a laugh or two. My hope for the readers of this website is that you educate yourself, find the slight humor in it, and continue on your journey with hope, resources and solid information, knowing that you are not alone and that your condition is not one that is of untruth.
I began to see knots covering my ribcage and felt deep pain radiating throughout my body..sprawling, spreading, shooting from my shoulders to my hands, I just thought "F ME.....What is wrong now"....I knew that I had a problem much worse than in years' past. It was painstakingly difficult to describe it all to my doctor -- how do I find the right words to describe what I am feeling and should I tell them about my Migraines, my IBS, my Sleep Terrors every night? How much is important? I certainly didn't want to come off like a complainer because I knew from experience that my sensitivities to pain and other stimulations had left me labeled as a 'Bubble Girl', a complainer even in some eyes. I wasn't willing to be written off this time. I was in hysterical pain and needed an answer, a solution, relief to my pain.
"Sometimes it feels like stabbing pain and sometimes it is a deep pain inside me, and sometimes my skin is so sensitive...I am so sensitive a hug just kills me...." I spent a year going from Specialist to Specialist, explaining this over and over again. With each negative test result (as in all Fibromyalgia patients, unless you have an underlying or other un-related illness, your test results will be totally normal), I was getting more and more lost in the health-care-system. Being called everything from insane to a drug addict to depressed, and then shipped off to another Specialist. Why? Because Fibromyalgia has only just starting being accepted in the Medical Community, due to the lack of evidence and lab diagnostics to test for it. Even with the uptrend in acceptance of FMS among physicians, there are still some who are completely unaware of the illness or who believe that 'Fibromyalgia is not real and those who simply are not well trained in how to treat it. It was not until I was examined by a compassionate Physiatrist (ie: doctor who treats pain) that I finally came upon the answer I was long looking for.
FIbro-my-what? I wondered, when I read the name during my first online research sesh. In true Lala fashion I went home calmly, I called my mother and we both began our due diligence of researching and reaching out to trusted healthcare professionals. I finally had an answer. Although it was years since my ribs inflamed with knots, which led me on my quest for answers, I felt as if I had been looking for an answer my entire life. An answer to why I was different. Why, when I put my elbows on my desk as a kid, did it hurt so badly (and still does). Why, when I would I would lay on the gymnasium floor to stretch during P.E Class, would my hips ache, and throb incessantly. Why, as I grew older did my body seem to ache and get stiff, despite how badly I wanted it to stop so that I could live a normal life. Why was I too tired to do anything when I hadn't done anything at all (answer: Chronic Fatigue Syndrome - one of the lovely Associated Symptoms of FMS). Why, all of a sudden did my ribs pop up with giant knots? Why did I begin to have knots all over my body? Why did my entire body zing with shooting pain that bounced around inside me like a pinball machine? Why was any touch or pressure absolutely un-bearable, forget trying to knead out the knots on my body - I just wanted to put on clothing! Why did my shoulders hurt, too, and my elbows, and my knees, and my hips and butt and back and hands and ...and...and..WHY? Fibromyalgia and All that Comes With It. That's Why. What came next for me was year after year of trial and error. Finding the right physician to treat FM is often as difficult as diagnosing it. Your treating physician needs to be compassionate, extremely knowledgeable if not a Specialist in FM/ Pain Management or Rheumatology. Also important is that your treating physician is located near your home so that if you are having a flare-up and they must see you in order to rx something outside of what you take ordinarily (in order to break your pain cycle - this is often called a Rescue Medication), you can easily get in your car and to their office for an emergency visit as opposed to going to the ER which is very expensive. If you do ever have an exceedingly awful flare-up where it comes down not to seeing your physician for a refill of Rescue Meds (which you fill at the pharmacy and take at home when you experience awful flare-ups), but more comes down to needing immediate medical intervention then you must go to the Emergency Room where they will determine how to treat the emergency-level of painful flare-up. Lastly, because Fibromyalgia is a muti-faceted illness it is critical that you put all of your treating physicians in touch with one another (Primary Care Physician (known as a PCP), if you have a Headache Doctor, you may see a Pain Management Doctor or a Gastroenterologist and so on) as they should all be in touch with what one another are prescribing.
FMS is often met with critics due to the fact that there are currently no FDA-Approved laboratory (blood, urine and so on) tests to diagnose our condition. That said, with such a darkly painful condition and grim prognosis (....remember now, for those of you who do not have it...this pain is all day & every day, some believe we are not even ill and there is no cure...) I strongly believe that in such circumstances you have 2 choices; cry about it or laugh. With the prospect of having this illness the rest of my life --- I damn well better be able to have a laugh or two. My hope for the readers of this website is that you educate yourself, find the slight humor in it, and continue on your journey with hope, resources and solid information, knowing that you are not alone and that your condition is not one that is of untruth.