A condition like Fibromyalgia is all consuming. People that don't have it just don't understand. When every inch of your body is screaming in pain and you can't even sleep to escape it, yet walk around in a fatigue-induced fog trying to function, it is damn near impossible to distinguish where you end and Fibromyalgia begins. One of my hardest emotional hurdles in managing Fibromyalgia/CFS was separating myself from the illness. In the beginning I would chant over and over to myself, "I have Fibromyalgia, Fibromyalgia is not me!" I had to draw a line between us, for it was quite possibly on its way to overtaking me, the very essence of me, it is that strong. When I would wake up in the morning after working retail the day before I would dread those short steps to the bathroom because I simply felt like I was going to break I hurt so bad. It was very difficult to think about anything else but the pulsing, coursing pain. When I would lie on the sofa watching the dust and dishes and laundry pile up around me, eating preservative filled Nutri-System because I had lost the use of my right hand and arm and could not cook, it was extremely difficult to draw the distinction.
But I was insistent. I refused to become disabled at 28 and watch my life fold in on itself, crumble down around me. Maybe if this had hit me a few decades later I would not have fought so hard, but it came when it did, at a point in my life where I was just embarking on my life, and after a few months of intense wallowing in self-pity I picked myself up by the bootstraps and set out on a quest to get better. Doctor after doctor would tell me there was nothing wrong. I found a great resident at UCSF who worked with me extensively to rule out every other condition imaginable. I did hours of research and would bring him in lists of ailments with similar symptoms and we would comb through it, disease after disease. Finally after about a year and dozens of tests he could only conclude I had CFS, still in the very early stages of Fibromyalgia and not yet diagnosable. I saw an endocrinologist for a second opinion and she diagnosed CFS and Fibromyalgia, already picking up on the loss of my right hand and arm as a Fibromyalgia symptom. So there I was. No treatment, no cure, no understanding of what I had from modern medicine. Just pain pills, pain pills with a side of major attitude. I guess some people like mood swings, constipation and nausea but not this chica! No, addiction to pain pills was never my issue (I have plenty of others, don't worry) but I did become addicted to not being in pain. It was too much to bear. I had to work. I had to function as some sort of wife. My responsibilities did not just go away because I was sick! So push push push myself into full-blown Fibromyalgia I did!
Eventually I turned to alternative medicine, combined with modern medicine, and have spent the last 4 years in various stages of ascent and decent toward improved health. I have educated myself as to the truths of our modern lifestyle and how it is so at odds with our biology. We are annihilating ourselves with our chemical filled diets and sedimentary lifestyle, our lack of sleep and abundance of stress! The typical American existence is the complete opposite of health and wellness, it is not even funny. Just yesterday I went to the "regular" grocery store (usually shopping at the health food store and Trader Joe's) and was appalled at nearly every label I read. French Onion Soup mix has MSG in it! MSG! But I digress... All the while I had to keep drawing that firm line between Fibromyalgia and Leah. We were not one and the same! It kept getting blurred, Fibromyalgia trying to erase it. But I would come along right behind it and draw it again, deeper and deeper into the ground until there was a divot between us that could not be repaired. We were in a never-ending circle of a battle, and slowly but surely I was the victor. After rounds of meds and side-effects from hell, working less and less until "Domestic Goddess" is now my claimed profession, buckets of supplements and hours upon hours of sleep I now consider Fibromyalgia 3rd or 4th place in my life. And I can finally say with all the confidence in the world, "I have Fibromyalgia, Fibromyalgia is not me".
Thanks for joining,
Leah
Leah...this one has hit home with me! I am on pain pills and HATE it! I feel like my life has become unmanageable, and the pills rule me; I don't rule them. It has been a vicious cycle, and now my body has built a 'tolerance' for them. If I try to wean myself, my pain increases, and I can never seem to get past that point where it isn't the weaning and my body adjusting to the withdrawal, because the pain becomes too unbearable to endure. I feel stuck and hate it. If I only knew at what point I would find a tolerable degree of pain, I would keep going. Unless, my pain IS THAT BAD , that I really do need all these freaking meds!
ReplyDeleteIf I had the time, or luxury to rest and stay in bed, perhaps I would keep going, but I have a disabled child that I am the primary caretaker for, so no breaks for me. Just push on and forge forward....I am also trying to find a new pain doc, with no success. I literally hung up and cried today, so disgusted. The woman who answered the phone was so incredibly RUDE!!! This was a PAIN CENTER I was calling, and she had the nerve to ask me why I was calling, and if I was experiencing pain. D'oi!!!!! WTF?? It was in that moment that I thought, "I can't keep doing this!" I have to do something. I can't stay on these meds anymore. Not when I am made to feel like I am some type of weak, 'addicted junkie', looking for my next fix.
The next question was, why are you in pain?! Well...let me see...I have had three back surgeries, I have another ruputured disc above my fusion, two tears in my shoulder, two herniations in my neck, a bone spur, arthritis in my spine, Lyme disease, Fybromyalgia, AND I CARE FOR A DISABLED CHILD ALL DAY! How is that? Enough for you?!! breath. sigh. breath. ooohhhmmm......sorry for the outburst. I am tired Leah. Tired of explaining myself. Tired of being tired. I want my life back. I miss it.
(I am especially grumpy today. I have been up very early, and I went to the doctor. I have a sinus infection and have to take Augmentin which rips up my stomach.)
I am curious what supplements you take, and what 'alternative' approach you take. I have to incorporate some things that include taking better care of myself.
I just can't stand this anymore!!
Kim~~
I was reading your post and was remembering when they finally diagnosed my Fibro/CFS. I had been working using my arms setting a section in a store and the next day my left arm was hurting but I pushed on and worked even in pain. Then the next morning I woke up and I can not even lift my left arm. I could hardly move it 6 inches from my side. I called and made an appointment with my regular practioner and I had been going in regular with complaints of muscle pain, fatigue, anxiety, restless leg and cramps at night and trouble sleeping and I just looked at the doctor and said I am not crazy, something is wrong with me. He had been my doctor for over 15 years and he looked at me and said no you are not crazy. I think you have Fibromyalgia. I had never heard of fibro. He told me about it and made me a appt to see another doctor. He gave me a shot in the shoulder to help my arm and so my world changed that day. I just thought that it was ironic that you had lost the use of you hand and arm also........... I had used the arm and hand repeatly for 3 days and the muscles just could not take the stress I was placing on them.
ReplyDeleteKim-
ReplyDeleteOh honey I feel you! Until we each find the "root source" of our Fibro we will continue to treat symptoms only, with some wonderful side-effects from the meds and no real chance at "managing" it, just masking it. Read under "Must Read Blogs" "How I Survived Fibromyalgia, One Woman's Story". That is the summary of my journey. Keep in mind we are all different and I believe there are a few illnesses that sit under the diagnosis Fibromyalgia that share similar symptoms, medicine just does not know enough yet and doctors can be real a-holes when they don't have a way to treat you. Something about that god complex, maybe. I cannot tell you what you need, you need a Naturopath or MD that is open to both methods to tell you that, but nutrition and sleep are KEY!!! You have to take care of yourself first and foremost, or you will have nothing to give to that little one of yours (of course my children are canine so easy for me to say) but this is not a illness where you can "power it out or push through". Your body is under attack and it is only with a complete change in lifestyle and expectation that any healing can come. You are in my prayers. Stay connected, it helps to have a support network that you don't have to endlessly try and explain your reality to!
Blessings,
Leah
leah! This one hit home with me also!! Thanks for sharing !! your awesome! Sending you love and hugs!! <3 diane :)
ReplyDeleteHI LEAH, I TOO HAVE HAD TROUBLE WITH MY RIGHT ARM IT STARTED WITH NECK PAINS, HAD MRI AND XRAYS THE MRI SHOWED THAT I HAD A SMALL DISK SAW AN ORTHPEDIC DR WHO TOLD ME THAT I HAD TO MUCH STRESS ON MY NECK AND THAT I NEEDED TO MEDIATED. WELL THANKS ALOT, THAT WAS THE LAST TIME I SAW HIM. I CONTINUED TO WORK AND PUT STRESS ON MY ARMS. I WAS A INFANT TODDLER TEACHER AND MY JOB WAS TO PICK UP THE CHILDREN AND COMFORT AND CARE FOR THEM. SOME OF THESE CHILDREN WEIGHT ABOUT 20-30 POUNDS. WELL ONE DAY I WENT TO REACH FOR SOMETING AND FELT THAT SOMETHING TORE. THREE DAYS LATER I WAS IN THE ER UNABLE TO USE MY RIGHT ARM. THE GIVE ME MORPHINE SHOTS. THIS IS WHEN I DECIDED TO TAKE MY OWN HEALTH INTO MY HANDS. I CONTACTED THE NYU BONE HOSPITAL AND FOUND A WONDERFUL DOCTOR BY THEN I HAD DEVELOPED FROZEN HAND SYNDROME. I HAD SURGERY IN JAN.2010 AND HAD TO RESIGN FROM MY JOB BECAUSE I STILL CAN NOT USE MY RIGHT ARM. PLEASE EXCAUSE MY SPELLING I HAVE LOST THAT TOO. I JUST WANT TO SAY THAT I ENJOY READING YOU BLOG.
ReplyDeleteWell I never knew how many lost the use of their arm as part of this! My problem is Degenerative Disc Disease (arthritis) in my neck, compressing my vertebra and Cervical Kyphosis (neck curves out, not in) that manifested myself as severe pain and loss of the ability to grip anything with my hand. I could not write, chop up food, barely put my mascara on. It sucked! My arm and hand are functioning now but is one of the first areas to scream at me in a flare. Blessings friends ;)
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