Life Reimagined: Four Years after RSD/ CRPS, by Rikki Lynn
Four Years After RSD/CRPS
Guest Post by Rikki Lynn
So, Life has become this thing that I now bargain with on a constant basis. Most people do that, I believe. We all say, “Well, if I go to the gym today I won’t have to feel guilty about the ice cream I had after dinner last night”, or “If I take the kids to pizza tonight, I can feel okay leaving them with the sitter tomorrow while I’m at the baby shower for the new co-worker I’m trying to befriend.” So it goes, one long life of never ending compromises. Only mine looks a little different.
If I grocery shop today, then tomorrow I can rest and the following day I can go to lunch with a friend, stop and get those few things from the store, and maybe get a case of water from Costco if my feet don’t hurt. Then, if by the end of the week, I’m feeling okay, I can try to accomplish the other errands I might still need to get done.
A full day out running a few errands can quickly end any future plans for the week if I don’t take a rest day between, or make time for healing foot soaks, and be very strict on making sure I’m taking my supplements.
Far gone are the long days of running around accomplishing an entire list of things and still preparing a hot meal and going strong until bed time and still getting up to do it all again the next day, and the next, and the next. That is no longer my life. I miss that life. So many friends think, “Oh, what I wouldn’t give to not have to work” …… I promise if you are one of my friends who thinks that, you would not give what I have given to not work. The cost is way too high a price to pay. I’d gladly work in exchange for a life I can enjoy and one I can dictate my daily routine and plans for.
Alas, things are what they are, and life is what it is, and so the story goes…make the best of it. We hear that often, don’t we? But what does that look like, in practice, in real life, played out?
What can that look like in your life?
Suffering doesn’t always have to be ugly. You can make it sparkly, and it can have its days where it even feels pretty. You don’t believe me, I know. I didn’t believe me either when I told myself I didn’t have to suffer the way I was. I have a knack for proving people wrong though, including myself. I’m stubborn like that.
It’s definitely a forced different way to look at life now. Since nothing is the same, nothing’s the same…. so I’m trying to adapt so that not everything is stolen away. I’m trying to find ways to be flexible in the life I’m left with and rearranging things to fit my new life.
I’m adjusting, and instead of saying ‘no’ to everything …I’m trying my darndest to find new ways to say “maybe” and get creative because “maybe”, just maybe, I can say yes to a few of those things. I’m so dang tired of saying no to everything I once said yes to. Before you think I’m suggesting everyone or anyone can just ‘do’ all the things we once could, or that any given day we can accomplish these triumphs, I’m not… but once in a while finding creative solutions to things that are bothersome can become things that are fun!!
So here are a few thoughts to share, just to give you an idea of what I’ve been talking to myself about recently.
I do some things already on a regular basis like curling my hair or putting makeup on about once a week before my Mister comes home from work so he is greeted with a ‘done up’ woman who looks nice for him. I enjoy that feeling. I am so keenly aware that many of us can not always do this type of thing by ourselves however, and would need help to do our own hair or makeup because of the location of our injury/damage. Well, let’s think creatively…
How about a girl’s night with girlfriends- one of them could host a ‘make up party’ giving each other facials or doing nails and toes (or whatever you prefer). Someone else can bring treats, ask one to do the arranging and invites, then all you have to do is be present. There are so many types of get-togethers for men and women alike. Party games or activities can be planned, it can be in a house as low-key or action packed as you would want. Everyone can be included to whatever degree fits for them. Often a great source of ideas is Pinterest or Google search baby shower, bridal shower, and party games for adults.
I truly believe this is an important thing that we should try to do on a regular basis. And I’ve always had that one friend who absolutely loves to entertain, don’t you? It really goes way beyond that.
It’s good to let friends feel like there is something they can do to help, because they often feel like you suffer, but they can’t fix it, or offer any solutions. Involving them in something positive they can do for you actually allows them how to add a meaningful gesture, and that means more to everyone involved. You see, so many of us with chronic pain get stuck being left out of outside activities and eventually left out altogether because people don’t think we can or want to do things and often they are right. We’d say ‘no’ anyhow even if they asked. So, they quit asking us. Our friends feel like they can’t fix our pain, so they feel a sense of ‘helplessness’ that leaves them feeling bad when they are around us. That isn’t our fault obviously, but really it isn’t their fault either. It is human nature to want to solve problems or avoid them. Let’s face it, chronic pain is a problem. At least it feels like one to most people who have to live with it in their life in any capacity at all, even at a distance. People tend to avoid what they don’t know how to fix. We tend to feel neglected, and then rejected, and then hurt, and then angry. The whole thing is more of a misunderstanding than it is an actual problem that can not be solved. We can give our friends tools to be involved and active in our new lives, but WE have to be the ones to say what we need from them, exactly how it should look, and we should not expect it all to be ‘a pain in the butt’ as it were. WE, as chronic pain patients, need to (yes I know I hate it too) do one more thing to add to our never ending list of ways we have to change our lives, but we must make a mental note to give our friends and family the opportunity to create fun and memorable moments in our lives. We can do that. Even if we can not get out of bed, they can come and sing for us, read poetry, paint for us, show us pictures of things outside they saw during the week, tell us about their week…but not the boring stuff…ask about random things! Have them do a mental note to seek out certain things for you while they are out- like how many times did they see something with an elephant on it? (Or whatever your favorite animal might be.) Maybe ask them to try to notice if they see it and keep track of where they were and how many times and to snap pics if they have the chance to…. it becomes a way for them to connect to you from where they are and for them to remember that they have the chance to bring you into their day and to bring their day to you at the chance when you get together they can share those moments and hopefully share what they thought about at the moment. Maybe you set out certain goals for certain friends that you know will help them do something fun for themselves that you know they might not do otherwise but you push them to do because you can’t do it…so you become their reason and you live vicariously through them…not as fun I know, but how great to be an inspiration to another human. Maybe you just sit on a blanket in your back yard with your pet and you talk about the things you wish you had done with your life while you had your health, and you figure out if there is an alternative way to do something similar to any of those things from a different vantage point-or in a different capacity than you once had imagined.
Life is all about the art of being flexible and adapting to whatever comes our way. We surely got dealt a hand that doesn’t look the way we wanted it to, some of us can’t even use our hands anymore at all….mine are much more painful than they once were but still useful to a degree at least for now. My attitude, my will, my mind, my nerve, my grit, my relentless pursuit of life, those are all things that this pain can not take from me without my consent. I will not give it. I will continue to find ways to bring life to my door, to barter with my body for one more day and find a way to love this life despite the pain. For me, life is about living it with my arms wide open. Some days I can hardly lift my arms and every great once in a while I can dance …. I choose to celebrate the days I can dance and to plan for the next one that comes along, hoping I can wear heels 😉 I choose to be that kinda’ girl. We can do this- together, we can find ways to cope, to manage, to lift each other up, to share a smile across the miles, to learn from one another, to gain new tools that help us manage better, to be there for each other in the hardest, darkest moments.
WE can do this because WE ARE WARRIORS and we will not go down without a fight!
Part of that fight might be a pajama party with a pillow fight and ‘The Notebook’ on the tv, and it may even be in the middle of the day if it needs to be- only one other friend there if that’s what it takes. We have to find those moments.
Make life come to you if you can’t go to it.
Don’t feel like you have to lose your life because you have to say no to things. Find things to say YES to…and create things you can get your friends to say YES to as well ❤
This is the 3rd year Rikki has shared her experience with us. Read her thoughts in her first year after diagnosis here in “Broken things can be Fixed”. As her life changed due to CRPS/RSD, you can read how she changed with it in her second submission here in “Flow like Water”. Rikki has been so generous to share her heart with us, allowing us insight into her ever-evolving life as she learns and grows through CRPS/RSD. Each post is insightful on its own, but I encourage you to take the time to read all three as a trilogy. Thank you so much for sharing your beautiful soul with us, Rikki! It is always my privilege to feature your work!
The Worst Lie in Chronic Illness
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives “will some day be of use.”
I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My personal peace rests in God, a relationship which has grown inside of my own tsunami.
This message of purpose is one I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again.
This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain and struggles you are battling will be worth “something” some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness is not a waste.
I don’t believe we have to wait until we’re perfect for our lives to have value. If that’s true, then I guess we will all be waiting forever!
Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We greatly undervalue the quiet connections, asking others how they are and actually listening in return, sending a note by mail to a struggling friend, or letting someone know they’ve been in your prayers.
Society does not measure these acts as successes, but what if you redefine what success means in your life? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing trials?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
You are Never too Messy to Matter
A Positive Message for your Lying Brain
10 insights on life: Awareness through ME
Today, May 12th is Chronic Fatigue Syndrome (ME/SEID) and Fibromyalgia World Awareness Day. This blogger @ Tips for ME discusses the mysteries of ME/CFS. Particularly interesting to me is the “Canary” or sensitivities aspect, which after 5 years, my doctors still haven’t been able to understand why I can hardly tolerate my own voice, sounds, lights, or smells. Chemical sensitivities alone can be such a confining aspect of Chronic Fatigue Syndrome/ME for so many CFS/ME sufferers.
Thank you for checking out a few of these enlightening ME/CFS facts, life wisdom, and helping raise awareness today!
This ’10 insights’ #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards at the world through the lens of ME. I believe that people with ME (pwme) have useful observations to contribute to society, perhaps a little akin to Old Testament minor prophets. This can be compared to the voices of other marginalised people groups, such as the queer community, the Equal Rights Movement and feminism. Each marginalised group gains different insights on life, related to their specific barriers to inclusion.
Table of Contents
2) Anything Can Happen at Any Time
4) A Rose by a Different Name Does Smell Sweeter
5) The Authority on Your Body is You
6) Access to Health Requires Self-Reliance
7) Very Little Knowledge is Truly Known
8) Learn your Limits and Take a Step Back
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What are the benefits of drinking Hydrogen Water? HFactor Water
When I had an opportunity to sample Hfactor Hydrogen Water, I was only hoping it would lower my dehydration level and switch up my normal water>>dehydrated>>water>> dehydrated>>cycle. However, once I began researching the studies on hydrogen rich water, I realized that Hfactor is more like a supplement than just a bottled water.
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
One of my conditions called Dysautonomia, causes me to be perpetually dehydrated. I drink a whopping 200 oz. of old fashioned H2O every day, and still, I remain dehydrated. Those with Dysautonomia are forever in search of fluids that will hydrate well and lessen fatigue, all without spiking or dropping blood sugar.
Many drinks that promise hydration or energy are also artificially sweetened, and are short-acting in benefit. Hfactor’s company website suggests drinking 2 packs per day. If this infusion of hydrogen water could turn my water guzzling into part time instead of full time, I’m interested.
According to my research, hydrogen infused water can improve circulation, performance, speed recovery, balance blood sugar, and lower inflammation.
Through digestion, the hydrogen acts as an anti-oxidant, fighting free radicals, and lowering inflammation. (Free radicals can damage cells and set off a negative chain reaction.)
Hydrogen infused water and saline have been studied in physical conditions and symptoms like muscle fatigue, periodontitis, pancreatitis, gingivitis, allergies, diabetes, cancer treatment side effects, bladder pain in Interstitial Cystitis, healing in severe burns, hypertension, brain injury, Parkinson’s, Mast Cell Activation, and all of these studies reported positive results.
In studies on patients, mice, and elite athletes, the hydrogen rich water ingested orally, affects the body through the digestion process. Though there are advantages of inhaling hydrogen, and from IV saline, it seems that during digestion there is a reaction to the hydrogen water which sets off a chain in the body, producing added benefits.
According to studies, the effects of hydrogen rich water are progressive. The longer and more regularly you drink it, the more improvement you’ll enjoy. The company, Hfactor, suggests drinking 2 waters each day, and always within 30 minutes of opening the package.
My first impression was HFactor’s packaging looks pretty rad and reminded me of Capri Sun from back in the day. The innovative packaging is designed to keep the tiny little hydrogen molecules from escaping (for all the nerds like me who needed to know). I wonder if there’s another benefit? If you have a child with an Autoimmune condition, Seizure disorder, or Diabetes, HFactor’s kid-friendly packaging and easy-to-sip-from straw might make this water more attractive to a child who would ordinarily only go for a boxed or canned (sweet) drink.
HFactor tastes like water. Crisp water, with no aftertaste or carbonation. Personally, since all I drink is water, I’m quite happy not to sip an artificial-tasting, sugary drink loaded with chemicals. Most beverages affect my blood sugar, but studies show that hydrogen infused water can actually help to control blood sugar.
I sipped 2 packs of HFactor every day for a week, and by the end of the week, I may have noticed my fatigue slightly lessening. It may have put a dent in my brain fog (cognitive disturbance), but it’s hard to say for sure.
On the down side, every time I had a package, it caused my intractable head pain to worsen, and some increased full body zappy action was telling me the water wasn’t a placebo. (I should note that many drinks do trigger my pain to increase.)
I am curious if this was a reaction to the introduction of hydrogen, and if I continued to drink Hfactor regularly over time, if the short-term worsening pain I experienced might subside? I like that the product is made in the USA, and the packaging has a low carbon footprint.
It’s meant to be torn open to place the straw inside, although with my fatigue and pain playing on high mode that week, I had to use scissors to cut them open instead.
At $3 per package, drinking 2 per day is something I would have to consider. If I were a coffee drinker or chugged sports drinks each day, I would easily be able to justify only $6/day extra.
HFactor can be purchased at http://www.hfactorwater.com/
HFactor Water has been recognized globally for their water and specially designed packaging. This is a quote from their 2015 FoodBev Innovation Awards acceptance press release: “Until now, previous hydrogen products in the global market were manufactured utilizing magnesium and chemical processes. Products were hitting shelves contained in packaging that scientifically could not maintain the integrity of their hydrogen-enriched claims.”
The most important take-away for me is that HFactor Water is an anti-oxidant rich drink, with anti-inflammatory benefits that may have the power to raise my energy over time, help balance blood sugar, and has more positive effects the more I drink it.
For me, this was just a fun opportunity to sample new water, and as I researched the benefits of Hydrogen Water, I realized that this is a real emerging health tool and I’m excited to share the information with you!
HFactor shares more research on Facebook & Twitter @HFactorLife
The Dream #SickLivesMatter
After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?
How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.
Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.
Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).
HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.
I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?
Your life matters. Your story matters. Your voice matters.
To share your story or to learn how you can get involved in advocacy online, email email@example.com
Ego, Medicine and RSD
If you are being treated for any chronic illness, this is a thought provoking read.
I would like to add that over the last 11 years, I have watched people try surgical, natural, and sometimes whacky treatments to find relief. So often, it was the most unlikely vitamin or oil that would finally cause the effect they had been searching for. That is why I really appreciate this writer’s view.
No, this isn’t a blog bashing your doctor’s sh*tty bedside manner. It’s also not about the doctor who makes you feel like you don’t understand your own condition (even though you have a feeling you “get it” maybe more than she does). I could blog about those things. I could blog about those ad nauseam. I will spare you my past frustration. The ego I am thinking of is ours – the patient’s.
I think in RSD we can hold ourselves back. And I think ego is the culprit.
Often we won’t entertain the idea that something we are doing or not doing just might impact our health. We believe in a pill but not healthy food. We believe in ketamine but not meditation. When we’ve worked out and lost weight, then we take credit. That we do. But in terms of a medical condition like RSD, it seems…
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“A Lonely Life” by Mary Jane Gonzales
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.
But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.
Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.
But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.
Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.
Find her books here available on BarnesandNoble
Medicating with Marijuana may not be for you if….
With more and more states in the US permitting the use of medical cannabis for different conditions, questions about medical marijuana have been on the lips of nearly every person with a chronic or progressive condition.
Author/blogger, The Disabled Diva answers your questions and curiosities in this totally dope article 🙂
Have you been considering medicating with marijuana? Choosing to treat my chronic conditions with marijuana was the best decision I have ever made regarding my health. While it has given me new life, I also understand that it isn’t for everybody. So how do you know if it is for you or not?
Medicating with marijuana may not be for you if…….
….. you do not have access to any medical marijuana dispensaries. Never purchase marijuana from a street dealer!!!! Dispensaries provide clean marijuana and you can be confident that it wasn’t tainted with anything you wouldn’t want to put in your body.
….. you believe that your doctor will support your decision. Although two of my physicians have not discouraged me from medicating with marijuana, they don’t necessarily support it either. One understands that it is my only choice because my body reacts so badly to prescription pain…
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Sleep, Perchance to Zzzzzzzzz
My friend and one of my favorite writer/bloggers, Mark Aldrich at TheGadaboutTown.com writes courageously on his journey with Spinal Muscular Atrophy and his sleepless inner critic.
We measure the quality of our day by the number of achievements we have. Number of documents published versus quality of work, or the number of times this week we beat personal commuting records to and from the office, or numbers of reps at the gym, or, worse, for those dieting, number of days without “cheating,” which represents even more harsh ways to harshly self-judge.
We live in a culture of Other Peoples’ Success and thus exist in a competition with others for more successes than them and yet better ones. This is because, as Brené Brown, a famous sociologist, points out, we live in a “culture of scarcity. We wake up in the morning and we say, ‘I didn’t get enough sleep.’ And we hit the pillow saying, ‘I didn’t get enough done.’ We’re never thin enough, extraordinary enough or good enough—until we decide that we are. The opposite…
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Chronic Fatigue Syndrome gets a Make-Over
Article dated February, 2015
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.
The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.
Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.
Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.
Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).
Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:
-Profound fatigue lasting at least six months
-Complete exhaustion even after minor physical or cognitive exertion
-Cognitive impairment or “brain fog”
-Worsening of symptoms upon standing or Orthostatic Intolerance
There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.
Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!
Read the IOM report for yourself here: http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf