Why my own of course. Rationally I’m aware that there is no magic bar that’s been set for me by others. There is no invisible line of measurement being monitored for results. Nobody is judging my achievements let alone defining what those are.
Well, that’s not entirely true. There is me, and I’m quite adept at setting the bar way too high for my current physical state. I’m living a life with Fibromyalgia and I won’t cut myself any slack, nor give myself proper credit for the incredible effort I put into moving around each and every single day of my life.
Rationally, I know this. But, unfortunately, that doesn’t make it any easier to accept. Nor does it keep me from constantly nagging myself in my head. It’s exhausting, and so…
Not only will I be taking it one task at a time, but I’m also going to pat myself on the back whenever I finish one. I’m switching into positive reinforcement mode, stepping away from negative mode, and becoming a cheerleader in my mind.
Today is a fibromyalgia day. Not a flare, but rather a not-so-subtle WARNING. If I push too hard there will be consequences.
Here goes, I’m giving encouragement a whirl. Congrats self! You made your bed, swept, took a shower, and tidied the kitchen.
Oh, right, and I also cleaned a toilet!
Take care, my chronic friends,BTW — you’re doing a great job today
Looking back to the beginning of my fibro tale. I don’t believe pharmacy was necessarily the wrong choice for me at the time.
If there’s one thing I’ve learned in the last two years it’s that no two single Fibro–tales are exactly the same. No two sets of triggers are exactly the same.
I had tumbled a little too far into the abyss and was dangling by a thread above the danger zone. So, I decided on the shortcut, quicker results to bring me back from the brink, both physically and mentally.
For this reason, I filled the first prescription. Which turned out to be the first of many more to come. As one might expect given the circumstances, I needed to get “a little bit well” to tackle life head-on again. So, I decided I would deal with the consequences later.
I don’t regret my choice otherwise, I believe without medicine and the support of my amazing Doctor I might not be here today sharing my Fibro–Tale with you.
After overcoming some uhhhhh shall we call them setbacks? A few months ago I finally decided it was time to start putting some of what I’ve learned about the many faces of my fibromyalgia to use. Now that the urgent stuff had been taken care of, time to try some new things.
I have decided to test the waters at decreasing the number of medications I am taking and to introduce some non-pharmaceutical healing “practices” into my life.
Why? I have finally reached acceptance. Two years into the fibro tale that is now my life, I am at last ready to meet the new me.
Chronic fatigue syndrome is a debilitating illness that takes many forms, has numerous symptoms, and no known cure is available from the standard medical community.
You might have some skeptical friends who doubt you are actually ill, perhaps they think you are simply malingering. However, chronic fatigue syndrome is a very real disorder affecting millions of people worldwide. Yet often patients can be told ‘it’s all in your head’, or suffer comments from family and friends like ‘oh yes I get really tired too’, both of which show a complete lack of understanding that the illness is in fact very real.
Unfortunately, its common name, ‘chronic fatigue syndrome doesn’t help people’s perception that it’s not a real illness and it’s simply tiredness. The illness has two other names, Myalgic Encephalitis (ME) and Systemic Exertion Intolerance Disease (SEID). Perhaps SEID helps describe the illness best as it does state a key feature of the illness i.e., the inability to tolerate exertion either mental or physical.
Fatigue is not the only symptom, although it is the one that most often typifies the disorder. And, this fatigue isn’t simply a feeling of being a bit tired or sluggish. A good night’s sleepdoesn’t help the fatigue which gets worse after mental exhaustion or physical activity and can take several days of bed rest to recover from.
There is no available test or biomarker for the illness. And, what makes this disorder baffling is the severity, type, and a number of symptoms individuals suffer from.
No single cause of chronicfatigue syndrome is known, and in fact, it can be caused by multiple things, but it is likely that trauma or several traumas of some description triggered it.
Because there is no test available, a diagnosis from your doctor is generally only arrived at by ruling out other illnesses such as hypothyroid, sleep disorders, kidney problems, etc. Additionally, a diagnosis can only be given after you have had the symptoms for at least 6 months.
Unfortunately from a naturopathic point of view, this is 6 months during which time you could have already started testing to find out what lies at the root cause(s) of your chronicfatiguesyndrome. It’s also 6 months during which time your symptoms and illness may be getting worse.
Some people mistakenly believe that they cannot recover from chronic fatigue syndrome because standard allopathic medicine has no ‘cure’, there’s no ‘pill’ they can be given to make chronic fatigue syndrome go away.
At the other end of the spectrum, others think if they just wait it out, chronic fatigue syndrome will disappear of its own accord. While this might happen, if you are lucky, it’s pretty unlikely. Without getting proper treatment, which gets to the root cause(s) of your particular form of chronic fatigue syndrome it can not only last for many years but during that time, gradually get worse.
Time can pass without your symptoms worsening, or new symptoms making an appearance. There can even be periods of time when you start to feel a little better. But there will be times too when you relapse and get worse. This is the point when your health declines even further.
You may be the type of person who is willing to wait it out to see if you can recover by yourself. However, I know from my experience that had I found the right naturopathic help and treatment sooner, my health would not have declined to the extent it did.
Chronic fatigue syndrome rarely develops overnight, but there is usually an event or series of events that lead up to it. The tricky thing is that it’s often not until you start getting treatment do you realize what those triggering events were.
During your journey with the illness, you’ll get many signs chronic fatigue syndrome isn’t going away. Most of the signs sneak up on you slowly. You adapt your life around your illness which can mask the reality of your worsening health condition.
The signs show themselves in various forms, some are physical, some mental, some behavioral, and some environmental. Many you may think do not relate to your illness at all. However, even the signs that show up in your home and work environment are rooted in your illness.
Additionally, there are a multitude of signs you should take careful note of to gauge if your chronic fatigue syndrome is not only hanging around but actually becoming worse.
It is foolish to ignore any of these signs as they are signals your illness is progressing and you need to seek out the right form of treatment if you want to have any chance of recovery.
Each individual has their own unique journey with chronic fatigue syndrome. Some have a particularly debilitating form of the illness leaving them completely bedridden. Others have a less severe form that gradually deteriorates as the illness progresses. Whatever form your chronic fatigue syndrome takes, there will be signs that it’s not going away…
1.You Don’t Feel Like Socializing – You may have been a bit of a social butterfly in the past. Always one of the first to eagerly accept invitations to enjoy lunches, family BBQs, nights out with the girls, gallery openings, shopping trips, dinner out with some fine dining, invitations to parties, etc. But now you realize you haven’t had an outing in months, you just declined an invitation to a close friend’s wedding too.
In fact when was the last time you enjoyed a social occasion. Come to think of it, the last time you went out you left early and couldn’t wait to get home, crawl under the covers, and sleep. And now, it just all seems like way too much effort to take part in any socializing at all.
It’s going to take too much energy to work out what to wear for starters. Then you need to get in the car and drive half an hour to get there. Don’t even mention how exhausting it is to have to make polite chitchat to people who, if you’re honest, just drain your energy. Nope…..all too hard, you just stay home.
2. You Can’t Cope With Even The Slightest Stress – Known for your calm demeanor and your ability to just get on with things now you find you’re flying off the handle with the least provocation.
You arrive at work feeling pretty exhausted, get settled at your desk with the first coffee of the day, and proceed to open your email. Scrolling through your emails, you ask yourself when did you start getting so many emails, how are you expected to reply to all these emails in a day?
Your stress level is already rising when your colleague walks up to you and asks a simple question about a project you are both working on and you not only don’t have the answer but you want to scream at him/her to just go away.
It’s only 9 am and already you feel completely overwhelmed and terrified that you’re going to drop the ball. Your workload hasn’t increased, in fact, it’s currently the quietest time of the year in the business but it’s all too much to deal with, you just don’t have the mental energy to deal with a normal workday in your normal efficient way.
3. You Can’t Stand Noise And Bright Lights – Summoning all of your energy, you pull an outfit together from the back of the wardrobe, slap on some makeup, and get in the car determined to enjoy a night out. The friends you are meeting up with are fun, you enjoy their company and you’re looking forward to a few laughs.
It’ll be great to enjoy a couple of hours of lighthearted chat and catch up with everyone. Something to take your mind off how lacking in energy you are is just what you need.
As you walk into the venue you’re hit with a wall of flashing lights above the band in the corner who is playing way too loudly. OMG, you didn’t realize there would be music and definitely didn’t expect the flashing lights. Your friends are there already, getting stuck into a few drinks, yelling to each other to be heard above the music.
They wave to you and you realize this was a BIG mistake, you just can’t do this. The music is pounding in your head and the bright lights flashing on and off are make you feel like you’re about to throw up.
Waving to your friends and shaking your head, you start backing towards the door. All you can see is the startled looks on their faces as they see you turn on your heel and get out of there as fast as you possibly can. And now you have another problem, how on earth are you going to explain you’re weird behavior to your friends who you just ran out on?
4. You Don’t Sleep Well At Night– You used to be such a great sleeper. Getting between 8 or 9 hours of sleep was easy for you. Now, however, getting a solid 8-hour sleep seems to be a thing of the past. In fact, you can’t remember when you slept soundly through one entire night.
Not only that but something seems to have happened to your body clock because you can’t fall asleep easily either. Sometimes you fall asleep, only to wake up again an hour later and you’re wide awake with no hope of dropping off to sleep again.
Lately, you’ve also developed a pattern of waking up at around 3.15 each morning and at that time you’re wide awake and there is absolutely no hope of getting back to sleep before the alarm goes off. And when you do wake up, you feel just as exhausted as you did before you finally got to sleep.
5. You Develop Feelings Of Isolation– You seem to have lost touch with family and friends. And, it seems as if nobody understands what you are going through with this illness.
It doesn’t help that you’ve been on the receiving end of comments that suggest ‘you’re just being lazy or that ‘everyone gets tired from time to time, after all, we all have such busy lives. Nobody seems to understand what you’re going through.
Your doctor can’t help you and you don’t know where to turn for help. It feels as if you are truly alone and nobody understands that you are actually ill.
6. You Are No Longer Able To Work Full Time– It hurts, you were at the top of your game, climbing the corporate ladder, doing great and the future was looking very bright indeed. Thinking you could recover you kept on pushing through, ignoring the signs your body was giving that it was all too much for you.
Now you’ve arrived at the heartbreaking realization that you no longer have the capability to continue on your present career path because you simply cannot work a full day. You are seriously considering giving up your full-time position and looking for a job that is less taxing. It seems that working a few hours a week is all you can manage with your current state of fatigue.
7. You Dread Being Asked To A Function – Once the life and soul of the party, you now cringe if someone asks you to a function as you simply don’t have enough energy to work AND socialize. Your well-meaning friend doesn’t understand you are ill, after all, you look OK on the outside, you definitely don’t look sick and you work full time in your career. So what could possibly be wrong with you?
Not only that, but you declined the last couple of invitations they gave you. It’s beginning to look as though you just don’t want to spend time with them and you know that pretty soon the invitations will stop arriving if you don’t attend something soon.
8. You Develop Intolerance For An Increasing Number Of Food Types – Lately, you’ve noticed everything you eat seems to set off a reaction and you start sneezing, your eyes water, and your nose runs uncontrollably. Only by taking an antihistamine can you get it to let up. And what’s with that strange blotchy rash on your chest?
But yesterday the glass of wine, latte, and cheese sandwich you had were all OK, today….. not so much. Now you need to work out which one of those items is causing you to react, or is it all of them, yikes? Eliminating several foods from your diet has already been carried out, but it seems the list of your food sensitivities just keeps getting longer. Soon it will be very difficult to choose food that you won’t react to.
9. You Feel Depressed– You feel utterly helpless, and don’t know where to turn for help with your illness. Everyone around you seems to be enjoying a happy and healthy fun-filled life.
But you are trapped and unable to move. Lately, you’ve started feeling angry that people seem oblivious to your condition. All you want to do is stay curled up in bed all day while your thoughts just keep dragging you down further and further. You are considering a visit to the doctor for some medication. Perhaps he can give you something to lift your mood, some ‘happy pills’. But you are not sure if you want to start medicating your feelings away, doesn’t seem right somehow.
10. You Suffer An Increasing Number Of Crashes– Lately it seems like the amount of activity you are able to carry out is becoming less and less before you crash. You used to be able to work part-time, carry out normal domestic chores and shop each day.
However, lately, you can’t do all the cleaning and shopping you used to do before you have to take to your bed to recover. Experiencing a crash used to happen maybe once a month when you overdid it with the cleaning and you’d spend the next two days in bed. Lately, you seem to spend more time in bed during the week and less time on chores and activities.
11. You Take Longer To Recover From A Crash– During the last month, you’ve spent more days in bed than out of bed. Recovering from a crash normally takes a couple of days, then you can get up and resume your semi-normal life.
Lately, though it seems each crash takes four or more days in bed before you recover sufficient energy to just get up and sit on the sofa. You feel scared that soon you will become completely bedridden if things keep on going this way. Your life is becoming increasingly abnormal with more of it spent in bed as you have no energy to do anything else.
12. Your Home Environment Is A Cluttered Mess – As you look around your home you realize it looks like a horrible mess. It hasn’t been cleaned properly for ages but, more than that there is clutter everywhere. The kitchen is full of dirty dishes and half-empty food containers and there’s a coating of dust over all the furniture. Dirty laundry has piled up, you’re running out of clean clothes to wear and the laundry basket is overflowing.
There are old newspapers, magazines, and garbage everywhere, and every surface is cluttered with ‘stuff’ everywhere. Your home used to be so orderly, you took pride in your organizational and housekeeping skills.
But now that you take a good look around, your home is in disorganized chaos reflecting the chores you haven’t managed to do due to your lack of mental and physical energy. Gazing around, you realize it’s pretty disgusting. You knew you were letting things slip as your energy disappeared. But how did it get this bad?
13. Your Brain Fog Is Getting Worse – This morning you can’t find your purse. Rushing to get breakfast ready, your mind is racing. How can you have lost your purse? Trying to frantically retrace yesterday’s steps you think about where you could have left it. Maybe it’s still in the car? You turn to get the milk from the fridge, open the door, and Bingo! There’s your purse, on the top shelf of the fridge. It’s been there all night so at least you didn’t lose it.
The only harm done seems to be that your lipstick is now a bit frozen and too solid to put on. But why on earth would you have put your purse in the fridge?
Oh well, all’s well that ends well, you go upstairs to get some documents you need for work and at the top of the stairs can’t remember what you came up for. Down you go again, then you remember…… the documents!
People at work are starting to notice you seem to be a bit forgetful and a couple of comments have been made about your lateness getting reports in on time. Actually, it’s starting to become a bit embarrassing, you used to be the one everyone could rely on.
14. You Are Unable To Exercise– Your weekly routine for years was always to exercise about 3 or 4 times each week. You didn’t go mad, just some cardio or weights and the odd class to break up the monotony, it’s always been a great way to keep your weight under control.
You’ve kept your exercise routine pretty steady for years and enjoy a good fitness level. So you know that motivation isn’t a problem for you.
But last time you did 20 minutes on the treadmill you spent 4 days in bed recovering. Always a regular exerciser, now it seems that even a gentle 10-minute walk in the park is too much for you. But you know if you push it beyond 10 minutes, you’ll end up in bed for days recovering.
15. You Seem To Be Suffering From Anxiety – Never normally an anxious type of person, you’ve noticed strange feelings surface that you realize could be symptoms of anxiety. That weird churning feeling in your stomach that you know is not indigestion.
Often you feel dizzy and light-headed, but sort of restless at the same time. The other day you couldn’t find a space to park the car and your heart started beating out of control and you felt as if you were going to pass out or vomit, or all three at the same time.
In situations, you can normally handle you now feel completely out of control. The slightest upset seems to trigger many of these weird symptoms and feelings.
16. Your Eating Habits Are Out Of Control – Having always been conscious of maintaining a healthy diet, why on earth are you craving french fries and sweets every single day? Come mid-afternoon the lure of all that fat and sugary wrapped goodness luring you from the vending machine becomes too hard to ignore.
Watching TV in the evening you’ve just eaten an entire container of ice cream on your own. Healthy salads, fresh lightly steamed vegetables, salmon, and free-range chicken have lost their appeal. All you want now is fatty oily pastries, deep-fried food, and chocolate.
17. Your Hair Starts Falling Out– People have always commented on your crowning glory, you’re gloriously shiny healthy looking lustrous hair. During your shower this morning the water stops draining away and on closer inspection, you find the reason.
No need to call the plumber, it’s just your fallen hair clogging the drain. As you start to dry your hair you notice lots of hair in the brush. Your once thick hair is thinning and the texture is wiry and it’s kind of frizzy too. Unfortunately, it can no longer be described as a crowning glory so thin and straggly has it become.
18. You Develop An Irritated Bladder– It seems you can no longer get a full night’s sleep as you are constantly awake with the need to pee. Not only that but when you pee it burns badly.
After checking with the doctor you find there is no infection, however, it seems you have developed an irritated bladder. Your stomach feels a little tender and you have the annoying need to go to the toilet several times a day. It’s not only annoying but makes many activities impossible. For example, going to see a movie is now completely out of the question as you’ll miss half the movie while you spend so much time in the toilet.
19. You Experience Balance Issues And Muscle Weakness – Realizing your normal exercise routine is out of the question you try some simple yoga. However, it seems that even the relatively simple tree pose is too much for you.
Normally your balance is pretty good, but doing tree pose you find it impossible to balance on one leg. When you try cobra pose you find your arm strength has deserted you too. You simply cannot push yourself up on your arms, they are too weak. All of the simple poses you normally do are also out of the question. Looks like you’ll need to start practicing restorative yogainstead.
20. You Try To Sit Down As Much As Possible – The thought of standing in the shower for even five minutes is too much for you. You’ve started taking a bath each morning instead.
You use a rolling stool to sit on while doing chores as much as possible. Cooking, ironing, and laundry tasks are all carried out whilst sitting. Shopping expeditions are now a thing of the past, it’s too difficult to stand in queues and walk around stores. Instead, you’ve started ordering your groceries online so that you no longer have to make a trip to the mall.
By taking note of new or worsening symptoms, and changes in your work and living environment you can recognize the signs your illness is giving you that it’s here to stay. It’s not going to disappear of its own accord. Now is the time to find a naturopath/ functional medicine practitioner experienced in treating chronic fatigue syndrome who can help you recover.
Fibromyalgia and Chronic Fatigue are often associated with toxic overload and therefore, finding ways to reduce the toxins in our bodies are crucial to good health. Dry Body Brushing is a great addition to your daily routine.
Many of us opt for a massage as this helps with our aches and pains. However, what the massage is actually doing is moving and draining lymphatic fluid, getting it to freely circulate around the body. Exercise also has the same effect. However, unless we are very lucky, daily massages are just not an option for most people and we may not be up for exercise every day. Dry Body Brushing is free, quick, and easy, taking just a few minutes every day.
Not only is the skin the largest organ of the body but it is really important for elimination and detoxification. The lymph is responsible for helping to remove toxins from the body and the skin accounts for the removal of about one-third of your body’s toxins.
Often when our body is toxic, this in most cases is reflected on our skin in varying degrees ranging from dry and lackluster to oily and acne. Whilst nutrients are delivered to other areas of the body first before the skin, it is the skin that is the first organ to show signs of dis-ease. Toxic overload can also leave us lacking in energy and suffering from digestive issues.
• Increasing circulation which in some cases has improved cellulite. • Sheds dry skin cells which encourage new cell renewal which ultimately results in brighter skin. • Releases toxins through the improvement of lymphatic drainage. • Stimulates the nerve endings which just feels great. • Helps to eliminate clogged pores and therefore assists absorption of nutrients. • Helps digestion. • Tone the muscles.
• For best results, use a natural bristle brush. • Always brush on dry skin before a shower. • Work in circular, brisk, upward motions always towards the heart and in the direction of the lymphatic flow. • Start at the ankles and work up. • On the back work from the neck, down towards the lower back. • Use circular counter clock-wise strokes on the stomach • Lightly brush over the breasts • Ensure that you never brush over inflamed, sunburnt skin or skin cancer. • Always shower after body brushing to wash away the sloughed-off skin cells. Follow up with a moisturizer.
Annet King, Director of Global Education for The International Dermal Institute says that “body brushing helps to remove stagnant toxins that break down connective tissue leading to the cellulite, however, ultimately there is no conclusive evidence but as a quick fix to plumping the skin, this may be one of the short-lived results of body brushing”.
As with adopting any new regime, it will take time to see results and it is recommended daily brushing for a minimum of 30 days to experience some changes. For a more thorough lymphatic cleansing, you should brush daily for 3 months to see the benefits.
Then the pain oozed into my jaw. This is when I learned about temporomandibular joint disorder (TMJ disorder). Persistent headaches became the norm. Thankfully, I have had only one crazy migraine that brought me to the hospital. Migraines are not cool, bro.
Stress shoved its way into depression and then full-blown anxiety.
Pain oozed into my lower back and hips. Cue for the frustrating adventure of going to specialist after specialist–none of whom could find the answer to my invisible aches and pains.
After a few weeks of digestion issues and my gastroenterologist reported that stress is impacting my digestion. Thankfully, my digestion issues did not persist enough for a diagnosis to be stamped on my stomach.
Restless leg syndrome. Aches and pains. Aches and pains. Falling asleep became an arduous undertaking. And it still is! Soreness and exhaustion travel to my wrists and fingers.
It’s not rheumatoid arthritis. It’s not Lupus. No diagnosis was yet discovered. My doctor printed out a detailed sheet of Hypochondria for me from Chronic Illness. And off he went to his next patient. No bedside manner.
Alone, confused, misunderstood, and in constant pain. I took a break from asking questions. And I saved a lot of Metrocard money from traveling to these “specialists.” Praying was different. My body and its pains were yelling for attention. “Heal me!” My mother, my aunts, uncles, my family in the Dominican Republic were all earnestly praying for my healing.
“Tenga fe. Dios te vas a sanar.” (Have faith. God will heal you.)
I didn’t have any faith. Before my aches and pains, I believed that I wasn’t good for anything. I was convinced that the domino effect of my aches and pains was God’s funny way of saying, “Since you don’t think you are good for anything, I will make sure you are no good for anything.”
I am managing with yoga, analgesic creams, TENS, and a few other devices and techniques that I am grateful for, but it’s a daily battle. My body, mind, and soul experience Jesus crucified as I re-offer my prayers, works, joys, and sufferings to his Sacred Heart.
Fibromyalgia and Agitation. You would be forgiven for thinking that these are two words that belong together. Well not in my world!!
For those of you recently diagnosed with Fibromyalgia or those who may have an inkling that perhaps you are showing symptoms of having the condition, it is easy to allow some fear to creep in. When words like “incurable”, “chronic” and “heightened pain responses” are used it is understandable that an element of fear will kick in and your outlook is considered gloomy.
My symptoms first started appearing in 1989, back in the day when the condition was referred to as “yuppy flu”. Doctors really didn’t have much of an idea about what was happening. After endless tests which always came back clear, I was worried that maybe I was imagining all of the fatigue and pain. A real fear for my sanity crept in. This carried on until I finally got my diagnosis.
Not because I was scared or shocked, the reality being I was relieved. I was right all along, there had been something wrong with me and now they knew what it was, I could be cured…
Oh, how wrong I was. I asked the doctor excitedly, what was the cure? He then told me there wasn’t one and the fear crept in again.
Since 1989, fear has tried to overtake me many times. My condition has threatened to overwhelm me but it has never quite succeeded because I was determined that for as long as I could, I was not going to allow the fear of Fibromyalgia gets the better of me.
Each new day gave me an opportunity to keep on keeping on. My attitude has always been to push on through whatever the condition could throw at me. There have been times when it has knocked me down but I never allowed the fear to keep me there. I was more afraid of not being able to enjoy my family and my life, not be able to hold down a job, and becoming a burden both financially and physically.
I didn’t have a crystal ball and could not see into the future. I did not know what Fibromyalgia would take from me and when it would take it, so I tried to get through each day the only way I knew how – which was to get up and get going.
If I had listened to my GP when I got my diagnosis, then for sure I would not be functioning the way I do now. My life would have consisted of anti-depressants and strong painkillers which ultimately would have stopped working and had to be replaced by stronger medication. Most likely I would have ended up in the wheelchair that he promised me further down the line and I would not have been able to hold down a full-time job.
For some, I know that this condition can bring with it additional health issues which means some people struggle massively with their Fibromyalgia. But I would say to those people and all of the newly diagnosed sufferers, don’t be afraid to push a little. Life is for living and making wonderful memories. Even with a chronic condition, it is possible to have a positive mindset that speaks to our body and says “I can do this”.
I can get out of bed today, I can have friends over for dinner, I can attend that wedding, I can make that trip for a few days holiday, I can do some gentle exercise, I can make healthy changes to my diet, I can take some quiet time to just be. I know some of you are reading this and saying I would flare – well yes, so do I but I try to compensate and be gentle with myself for a few days after doing something which exerts me. I almost build it into my schedule. I have a late-night, I follow it up with 2 early nights to try and rest my body.
We have all heard that saying, and I believe that fear could be the thing that cripples us long before Fibromyalgia. It is said that ourdeepest fears rarely manifest. If I could offer you one piece of advice that I know to be true for me it would be to “do it anyway”. Don’t allow the fear of what may or may not happen to hold you back from living your life. Don’t let the expectation of what you should be going through as a Fibromyalgia sufferer stop you from creating special times and memories. Your body may surprise you and give you an easy ride – you won’t know until you try.
Baby steps they may be but they are still steps in the right direction.
I heard a poem today which inspired me to write this piece. it is by Jeff Foster and is called Nothing to Fear.
99.99999% of your fears live only in your imagination, in anticipation, and in memory.
Even if the worst happens, you’ll find yourself dealing with it at the moment, responding from a place of presence.
You don’t have to deal with it now, you’ll handle it then.
And who knows: The “worst” thing may turn out to be your greatest teacher, your most profound call to awakening, an invitation to the kind of courage of which you never thought yourself capable. Fear isn’t your enemy, but a signpost ~ breathe into the moment.
This post may prove to be somewhat controversial but it comes from my heart and I believe I would be doing a disservice to my fellow “warriors” if I were to let it go unsaid.
When I was first diagnosed 15 years ago, I was relieved that having already suffered for 10 years my condition was very real and had finally got recognition and more importantly a name. I remember leaving my doctor’s surgery and going home, heading straight for the computer.
I wanted to know all there was about Fibromyalgia, it was something I had never heard of before and those around me had never heard of it. I wanted to learn what it was, what caused it, and more importantly how I was going to manage it.
After many hours on search engines, I finally switched off the computer feeling totally down, demotivated, and totally despondent. All I had learned from my fellow sufferers was how to claim disability allowances, how I should stop working, what were the best drugs and plenty of pictures of people posing happily with their wheelchairs and walking sticks.
On that very first day of diagnosis all those years ago, I made the decision that this was not and never would be my route in dealing with Fibromyalgia – there had to be a better way and I was determined to find it. So over the years, there have been ups and many downs with this condition but my determination to find a way to manage it positively has remained steadfast.
Since committing myself to the goal of reaching out to fellow sufferers, I have stepped back into the world of Fibromyalgia communities and online support groups and have to say in the majority, there are some great sources of advice and help. There is a thriving community of people who come together and share their stories safe in the knowledge that there are others who understand them and can relate. The internet I feel has helped us all become much more educated about our condition which can only be a good thing.
I think sometimes, those of us with Fibromyalgia can be our own worst enemies. The frustration at the lack of support from family, friends and yes, even medical professionals makes us vulnerable to hosting our own pity party. In the absence of outwardly obvious symptoms, the pages of “normal” tests results, and our grossly misunderstood diagnosis, we quickly become paranoid and confused to the point whereby a broken nail is blamed on Fibromyalgia and our plight appears hopeless.
Sadly, I see hosts of people on these forums searching for answers that clearly our doctors can’t or won’t provide, I see them grasping for any bit of information that may explain away their constant headaches, their unexplained bruising, their restless legs along with a host of other weird and not so wonderful ailments that plague their daily lives. I too have been guilty of putting every little ache and pain down to Fibromyalgia when in reality it could potentially have been something more sinister.
I find myself staying away from the doctor’s surgery, probably down to the years of doubt and disbelief that there was anything wrong with me, the fear that I will be labeled a hypochondriac or once again, be sent off for tests that only ever come back normal. I dismiss many ailments as “it’s just a flare” and crack on as usual.
I resisted the offer of medication back when I was diagnosed in 2000, for me, strong painkillers and antidepressants were not the routes I wanted to take if I could help it. I had to learn more about what I was dealing with as opposed to just giving in, rolling over, and accepting the first treatment protocol I was offered. A doctor many years later, told me that if had accepted those drugs back then, it is unlikely that I would have the life I have now, it would have changed……..for the worse! My body would have gotten used to the doses over time and my prescription would have been increased several times to enable me to have had the same effect.
Please don’t get me wrong, I am not saying that medication is bad, it was just not for me at the time and I have never reached a time (yet) where I am ready to hand myself and my pain over to drugs. Maybe I am a fool and possibly there is the chance that I could have led a relatively pain-free existence for these past 25 years, my fatigue could have been controlled and I could have led a different life. In my defense, I also suffer from hemochromatosis so it is important that I protect my liver where possible.
When I read the stories from fellow sufferers, I could cry. It seems that the medical professionals are only too happy to hand out the prescription drugs like smarties as a first resort as opposed to the last. I have found that there is another way and for me, that doesn’t include medication. I only wish I had found out earlier that changing my diet and including yoga and mediation in my life would have such a massive impact on symptoms. My 20’s, 30’s, and 40’s may have had a different story to tell.
I see the forums crammed with people who have a whole host of ailments and conditions all laid at the Fibromyalgia door, they have prescribed a cocktail of drugs including morphine for symptoms that potentially may have nothing to do with Fibromyalgia. Whilst this condition is very real and affects our lives greatly, the reality I feel is that the GP’s use it almost as one net catches all. Are our complaints ever really investigated or are we written off as the nuisance that is constantly in the doctor’s office?
My own doctor fobbed me off with a physio appointment recently, only for me to be told by the physiotherapist that he couldn’t possibly work with me as there wasn’t one area that needed attention but my whole body. He was fuming that in 25 years I have had to find my own way and I have never been offered the support that he thought I was due – he subsequently wrote a rather abrupt letter to my GP.
So, I guess at the end of this, what I am trying to say is that we as Fibromyalgia sufferers have to take more responsibility for our conditions, we have to research the alternatives to the strong drugs which will turn us into zombies barely functioning and we have to be honest with ourselves.
Whilst we have to treat Fibromyalgia with respect, we must also be open to recognizing that it possibly isn’t the reason for every little thing that goes wrong with us. Arthritis can come with age not necessarily because you have Fibromyalgia, issues with digestion won’t always be IBS.
We have to follow our instincts and listen to our bodies – we have to take ownership!
Over the years it is true to say that on the days I have felt my worst I am invariably greeted with the words by somebody or another “you look really well”.
I have always kind of smiled at this, even joked about how crap I feel yet people think I look amazing. However, this week it really got to me and set me thinking about the realities of living with what is effectively an invisible illness. I remember once a doctor saying to me that I would probably be better off having a leg missing at least then people would know I was suffering – I am of course not suggesting that we all go out to have legs amputated but I kind of see his point.
I am guessing that for many of us suffering from Fibromyalgia, we look pretty normal, nothing really to distinguish us from the next person. Standing at the train station this morning, I am sure nobody looked at me and thought “Poor girl, look at the pain she is in”. However, in reality, my current flare-up is so bad I could cry.
I work, I socialize, I run home and I exercise (albeit slowly and gently with yoga), hey maybe I am luckier than most but the reality is the effects of Fibromyalgia are never far away. Sitting chatting yesterday, without thinking I tapped the biro onto my thigh and there it was, the familiar painful nudge reminding me of Fibros presence. On the outside looking in, nobody noticed, and had I have yelped out or grimaced who would have believed that a tap from a pen could evoke such a painful response. At best, I may have been labeled a wimp, at worst a hypochondriac.
In the early days before my diagnosis, my doctor had given the suggestion that I was maybe imagining it and would investigate this further. She concluded that I must have had some mental stress that could manifest as “imaginary pain”.
I knew that my pain and fatigue were very real but after being written off so many times, even I began to wonder.
I can imagine that for friends and family, it is as equally confusing when their husband, wife, mother, father, son, or daughter are tired and lethargic all the time, they are in constant pain, and yet there is nothing to show for it and they are tested by the doctors only for the tests to come back normal. What are they to think? It doesn’t take a genius to figure out the frustrations and conflicting emotions on both sides.
Due to the nature of our condition, we are often left feeling lonely and vulnerable. Unless we have a very sympathetic doctor, then we may feel that we have no place to turn, nobody who can fully understand how it feels to look Warrior and yet feel wretched. Nobody can understand, no matter how well-intentioned or how much a person loves you, they will never grasp the reality of Fibromyalgia. That is why the Fibro community is so important.
So, the next time somebody tells you that you look great and so well, hold your head up and be proud.
Fibromyalgia is horrible and robs us of so much, but it can’t take our life or our will. We have to work hard to function as normally as we can and that takes strength and guts to get up every day and face the world in so much pain particularly knowing that nobody will probably even notice.
We love hearing stories about people who have gone into Fibromyalgia remission. So here at But You Look So Healthy, we have decided to seek out those people! Most doctors give little to no hope or guidance on how to feel better. Who better than to ask about feeling better than the experts themselves? No, not the doctors, but the people who have managed to figure it out themselves and live it!
Today we talk to Dawn from New York about her Fibromyalgia journey and how she stays healthy after living in pain for years.
DAWN: I had injured my back playing with my kids a few years prior, but never got a diagnosis on that until 2006 when a sedentary job caused everything to flare back up. I believe it was a cross between this injury that caused herniated discs and getting the flu that was truly brought on by fibromyalgia.
BYLSH: How long did it take for you to get diagnosed and what kind of doctor diagnosed you?
DAWN: I struggled with the pain and ended up on disability for over a year before seeing a pain management specialist. He was the only Dr, other than my chiropractor, who believed me and diagnosed me. I dealt with the pain and various medications over the years.
BYLSH: What was your rock bottom when you decided you needed to change in order to heal? What changes did you make in your life to feel better?
DAWN: In October 2019, I decided to try a keto lifestyle to lose weight. I was convinced that I would always be in pain. I can’t recall exactly in my weight loss journey when it happened, maybe a few months in, but I realized that I was no longer in pain! My inflammation was gone. I no longer needed my pain meds! I feel that by cutting out potatoes, rice, pasta, sugar, grains, and gluten, I was relieved of the inflammation, which I believe has put my fibromyalgia into remission.
BYLSH: Looking back in time is there anything you would have done differently to not get fibromyalgia?
DAWN: I am not sure of the causes of fibro, or if I could have avoided getting it, but I wholeheartedly believe that we can change our outcome with diet and exercise!
BYLSH: What do you want other fibro people to know they need to do in order to go into remission?
DAWN: I highly suggest changing your diet by ridding yourself of processed foods and eating meats, vegetables, eggs, and healthy fats.
BYLSH: For you, what is the number one thing to stay in remission, AKA your secret sauce or holy grail? It is the number one thing you have to do to stay in remission.
DAWN: I realize that we are all different in our journey but start by taking control of your diet and exercise! I will continue to eat a low-carb/keto lifestyle because this is what has worked for me! I hope that you, too, can find relief in your journey to better health!
In past posts, I’ve written about feeling ill-equipped to handle the role of spouse, the (still ongoing) process of learning that I can’t fix everything, and just being there for my loved one. Those are all key components of becoming the best you can be as a partner, spouse, relative, or friend of a loved one who suffers from a chronic illness such as Fibromyalgia.
However, some days are just tough…
tough to watch your loved one suffer a Fibro flare
tough to watch your loved one have a good Fibro day but is sick with a cold, the flu, etc.
tough to watch your loved one deal with a separate health issue unrelated to Fibro (i.e. back and/or neck problems, migraines, etc.)
If my loved one has managed to avoid a Fibro flare by doing everything “just right” I feel it is a tragedy if she gets socked with another health issue that sours an otherwise good day. THOSE ARE THE DAYS THAT REALLY FRUSTRATE ME!!
This is a time to put worry and anxiety to bed. One thing I need to remember in these instances, and I encourage you to do so as well, is that worry is essentially pointless. I am a HUGE worrier, so this is something that I struggle with on a minute-to-minute basis.
Worry is trying to control the uncontrollable. Fibromyalgia, chronic pain, and other conditions that afflict our loved ones are often, if not always, out of our control. As caregivers and helpers, we need to only tackle the things within our control that can be beneficial for our loved ones.
What are some of the things that are in our control?
Cooking (meals that are conducive to our loved one’s dietary needs, not ours; that means using ingredients that will NOT cause a flair)
Reassuring and supporting
Sacrificing (putting many things second to our loved one)
We’re all human. I know that changing our way of thinking, our way of eating, our way of living life…for the benefit of someone else…is very difficult!
No matter how hard it seems, after all, some days are just tough, we have to remember that we’re called to love one another, and the well-being of our most special lovedone(s) should be a concern that rivals none other.
