Yesterday my step-mom forwarded me an article about a woman with Fibromyalgia who walks half-marathons!* She has found her salvation from the pain and anguish this illness causes in walking. The warming of her muscles and loosening of her joints as she marches through the pain eventually calms the pain. As someone who has recently embarked on an exercise program I can tell you two things. This walking half-marathons thing actually can be done (not that I have done it or anything) and it is a very long and slow process to re-introduce exercise to your pain filled Fibro body. It takes years to get to the point that your pain is managed with exercise and little else. And as we agreed way back in the beginning of this whole blog and Fibromyalgia Crusade, not every patient will have this experience because Fibro is not a one-size-fits-all illness. It has different etiologies and outcomes depending on each individual patient, their co-mingling conditions and the actual root cause of their illness. Also, and please hear me here, if you also have Chronic Fatigue Syndrome, the sheer exhaustion from walking up a flight of stairs alone will impede you from cardiovascular exercise. At least it did me, for many years.
While it is great to hear about a Fibro sister that has found a way to manage her pain in a positive and healthy way, it also puts an immense amount of pressure on the rest of us. How many times have we been shushed out the door of our doctor's office, clutching a prescription for a drug that mysteriously "calms" that overactive central nervous system and a mandate to exercise more? A fellow Fibro-advocate sister was just on Dr. Oz (click here for the video), and asked him for his advice in managing Fibromyalgia in a natural way. His knowledge of Fibro and how it affects the body was pretty right on, I was quite pleased to see. He stated the #1 most important thing for us to do is keep moving. The body needs energy spent to regenerate itself. Well that is fine and dandy Dr. Oz, but you try moving a body throbbing in pain and wracked by fatigue, magnets sucking you to the ground, the sheer act of walking across the living room a tremendous feat. It is quite simply harder than hard!
Doctors are so much nicer to folks they can fix. They can't fix us yet, so it becomes our responsibility to manage it. I personally believe what we are dealing with here is an environmental illness of epic proportion. It is a reaction to the unhealthy world we live in. Stress, chemicals, pollutants, processed and manufactured food, big business, damaged DNA, divorces, illnesses, accidents, corporate responsibilities, injuries, latchkey kids...oh the list goes on and on. Did I mention stress? All that we have gained from our agricultural and industrial and counter-cultural and technological revolutions. Compile all this together and figure the majority of us have been active participants in this world, completely oblivious to what we were morphing into biologically. Trading convenience for wisdom, now for later. Fibromyalgia is hitting the world in epic numbers. There is no race or socioeconomic status or religion or political party or specific culture predisposed towards this illness. There is no answer to "Why me?". I am sure Fibro itself has been around for hundreds of years, at least. But over the last few decades the numbers have skyrocketed! For whatever reason, at this point in the perfect storm of modern society, so many are receiving this diagnosis. The central nervous system of millions of people becomes stamped with catastrophe, causing damage, permanently and forever altered. Leaving the body that holds that damaged CNS with awful pain and debilitating fatigue, often accompanied by horrible insomnia. So take heart, my friends. There is another side to Fibromyalgia. One where you can exercise and live your life again. When I was at my lowest low doctor after doctor kept telling me to exercise, and I thought they were out of their minds. And to a degree, they were. But once I got treatment for my CFS, slept for like 5 years, changed my diet, stress levels, lifestyle and most important of all, my attitude, my life improved drastically. See folks if you believe it, it can be done.
Thanks for joining,
Leah
Ironic! I just got on FB for today and this is the first thing I see!! ~ I was JUST saying this very thing as I was trying to stretch out enough to sit without hollering!!
ReplyDeleteThanks for your blog, I like reading it! ;0)
yes, it is so important to get yourself to a level of health where you CAN exercise. i am working on that myself. first i have to get the diet & supplements right and lots of sleep in order to regenerate my body. i know i will be able to do certain exercises when my body has healed some. the best suggestion i can make to those that think they cannot exercise.....water workouts in warmer pools is great if you can find it OR go about your program at an excruciatingly slow rate. one woman i read about started with 5 minutes a day of walking. she would work up to 20 minutes 3 days a week but if she had a flare up she knew she had to start at square one. thanks for your wonderful post today. -S
ReplyDeleteThank you for this post! I agree with you, I wish I could exercise as well! I can't even go grocery shopping for more than an hour without getting sick! My right leg, head and right arm start to shake uncontrollably and I have to constantly sit so this won't happen. I wish I could just walk without this happening. I get so tired I could go to sleep right there in the middle of the store without a care in the world of what others might think! I never thought I would get to this point in my life. I was always so concerned in how I looked and very much into the latest fashion. Now loose dresses are the best think in the world when I am having a flare-up!
ReplyDeleteI really hate it when people tell me it's all in my head or that I just have to get up and move!
I think something that would be hugely beneficial is a change in the way doctors break the news of a fibro diagnosis and the way they go about instructing sufferers to exercise, which at the moment seems oblivious to the often insurmountable difficulties in simple tasks such as traversing a flight of stairs or trying to clean your own home. They must take more time in explaining the condition on a one to one basis and treating sufferers with more dignity than many of them do presently. Because you do not just recover from, beat or get over fibro, you can often be made to feel like a bit of a pain in the neck when you complain to the doctor that their prescription isnt providing pain relief, is causing even more fatigue or is not providing a decent night's sleep. I often wonder if im expected to feel guilty for not responding better to their limited treatment and I always come out of the doctors office feeling misunderstood, that my desire to get a better quality of health is being undermined or dismissed by the person who should be most concerned with helping me deal with this horrible condition and who should best understand it. As I said in my comment on the 'celebrities with fibro' blog, we need more doctors to contract fibro, because only then will they understand what they're asking us when they tell us to exercise when our bodies are a cage of pain and we know from experience how easily a flareup can be caused or exacerbated from physical exertion. I was diagnosed just over a year ago and it is only recently that I have realised that, yes, it is absolutely vital for fibro sufferers to have an exercise routine (I can no longer wait for a respite to come so I can feel well and able enough to start exercising, because it won't) but what is even more important is expert guidance on how far you should push it, when to keep walking through the pain and when not to. Graded exercise therapy, advice from fitness experts who also understand the different ways a fibromyalgic body will react. It is above and beyond to expect sufferers to know all this, especially when they are sitting at the wrong end of a life-sentence. It is not good enough to send people off with no more than antidepressants or strong painkillers that make you too tired to fucntion, eliminating even more of your day and then to tersely add, 'by the way, exercise..'. It is my belief that so many people would feel so much better if their medical support had the level of knowledge they should have to be dishing out advice to sufferers and too many don't.
ReplyDelete