Fibromyalgia varies so much for each sufferer making it a difficult condition to treat. It’s a complex condition that might be diagnosed either as primary fibromyalgia, meaning stand a lone, or it could be secondary to coexisting conditions, such as rheumatoid arthritis and other autoimmune disorders, or ME/Chronic fatigue syndrome, as well as other illnesses that overlap and have mirror symptoms.
Symptoms can be a frustrating dilemma for many sufferers, particularly when a new symptom appears and not knowing if it’s fibromyalgia or something else. For reassurance, it’s sensible to get these checked out as not every symptom is fibromyalgia related, also there’s many reasons behind pain and why it gets triggered.
With no known specific cause, fibromyalgia is an unpredictable condition, characterized as a syndrome with multiple symptoms which correlate with each other and fluctuate in degree which can be severe enough to cause a sufferer to withdraw from activity indefinitely.
The most commonly associated symptoms, but not conclusive, include brain fog, a disrupted sleep cycle with little restorative sleep, fatigue, digestion problems, IBS, heightened sensitivities, central sensitization syndrome, random or persistent pain and weakness in the muscles.
Symptoms are affected by a mixed bag of triggers such as over or under exertion, changes in the weather, various sensitivity intolerance and stress. However, very often symptoms may appear to manifest without reason, but behind every symptom there is always a cause, albeit hidden, and influenced by either or, a trio of abnormalities classified as functional, structural and metabolic.
Very gradually and over time, you get to know your symptoms as if they were your shadow, then through trial and error, it becomes very much down to how you manage and juggle life around it. For many sufferers this can be a constant struggle, but the question is, what other possibilities might be contributing to the cause of symptoms?
In general as patients, there is a tendency to gear towards “treatment of symptoms” as a method for coping, with the hope and expectation that the medications will work and most of the time the “cause” is bypassed. In part, you could attach part blame on the conventional treatment approach, where over the centuries, medicinal treatment has been mainly symptom focused.
The downside to this, I’m sad to say, is that in the process, it makes people and their health having to fit into classic-text- book “box” and the lid goes on, but when it comes down to fibromyalgia, we all know we won’t fit!
This is a major problem for people with fibromyalgia where concerning symptoms may get overlooked. Another type of problem here is when it becomes the norm of getting too caught up with the symptoms. which only adds to unhelpful habitual thinking patterns such as excessive worrying, overthinking and catastrophising, by which time it’s too late!. The outcome is that the stress-response is triggered and you’re back there again – stuck in the fibro-stress-loop! Out of habit, you can begin to see how you can unconsciously and unintentionally aggravate your symptoms and make your pain worse.
So, number one on the list of inadvertently making your symptoms worse is unhelpful habitual thinking / behaviour patterns, leading to next on the list: STRESS.
Fibromyalgia is known to be stress related and when stress accumulates it becomes a chronic illness in itself, compromising several systems in the body, including functional, structural and metabolic, and is capable of depleting the body of vital nutrients, as well as affecting the health of the nervous system, immune and digestive system to name a few and is a major antagonist of a fibromyalgia flare.
The good news is that there’s umpteen ways to better manage stress and particularly with coping strategies that involve mind-body awareness, such as meditation, breathing exercises, yoga, tai chi, qigong, getting in nature and mindfulness etc., as well as getting help to change unhelpful thinking patterns with talk therapy such as cognitive behavioral therapy (CBT).
Here’s a few other seemingly hidden ways that might surprise you, which might be inadvertently aggravating your symptoms on a daily basis and could be having a devastating affect, making your symptoms unnecessarily worse:
Although fibromyalgia isn’t considered an inflammatory condition and testing for inflammatory markers are often within the normal range, this doesn’t mean there’s no inflammation present.
Inflammation is a natural product for the body’s healing and repair process, whilst chronic inflammation is when it goes into overdrive causing unavoidable pain. This overreaction may be brought on by various means, including various chemical sensitivities and /or various allergens, intolerance or certain foods, especially sugar and types of hydrogenated fats.
Interestingly, recent scientific research using PET scans on people with fibromyalgia has shown widespread neuro inflammation across the brain and proteins linked to inflammation in the spinal fluid. Other hypothesis suggest that inflammatory cytokines could be driving various irregularities in neural networks. This must raise a few questions, but the main question you should be asking is how to avoid unnecessary inflammation in the body in the first place?
First of all it’s worth noting that there’s no scientific evidence that we should all be drinking 2 litres of water a day, it’s a myth and no doubt created by the bottled water industry! The truth is that the amount of fluid your body needs is largely governed by your age, gender, body size, the level of physical activity and the environment.
Water makes up about two thirds of your body weight and is needed to carry nutrients and waste around you’re your body and is needed to detoxify, regulate body temperature which is often problematic in fibromyalgia. Water plays a role in most chemical reactions in the body and is essential for brain function, as well as being a key nutrient that makes up the synovial fluid that acts like a shock absorber, lubricating your joints to allow ease of movement.
When your body doesn’t get an adequate supply of water it causes muscles to weaken and become energy deficient. This results with a build up of toxins circulating in your system and an increased pain intolerance, obviously something you want to avoid if you have fibromyalgia.
Did you know that as we age, (around 60 years) the body’s natural thirst mechanism becomes less sensitive and becomes more prone to dehydration than a younger person? A problem arises if you forget or neglect your body’s need for fluid, or substitute with sugary drinks, tea or coffee which act as a diuretic, however we do get some fluid from foods like fruits and vegetables.
In general your body has a way of letting you know when it’s in need of water by way of making you thirsty – but sometimes that might be when it’s already too late and you’re already dehydrated. Symptoms include:
- Light headiness
- Dry mouth
- Dry eyes
- Dark yellow urine
- Muscle pain and slow recovery
- Stiff achy joints
- Lack of energy and concentration
As you can see, some mirror fibromyalgia. It’s much better to have regular sips of water throughout the day, (drinking more than you need can be as harmful as drinking too little) and always keep a bottle of water with you whilst you’re out and about.
Foods that Trigger Symptoms
When it comes to what we eat, we are all different and what might be a trigger for some, will not for another. What is important though, is to be aware that some foods and products are categorically worse than others for triggering off pain and other symptoms. The most common include:
Food additives such as MSG
Nightshade vegetables (tomatoes, potatoes, various peppers)
Processed sugar added to beverages and food products.
Refined carbohydrates / processed foods high in salt
Food intolerance can be quite subtle, you might not even notice whilst some can be very severe with symptoms like widespread pain, headache, sinus, skin rash and inflammation. It’s worth keeping a symptoms journal / diary and recording your daily diet to highlight any connection. If you start to see a pattern emerge you can eliminate what foods are negatively affecting you and aggravating your symptoms and try reintroducing at a later date to see if there’s any change.
Even if you’re lucky enough to get a good night’s sleep you can still wake up feeling pretty much wiped and maybe the first thing you reach for is the morning coffee to kick-start you into anything like normal. However, a problem arises when you feel you have to keep topping yourself up and still on the coffee well into the afternoon.
Caffeine can be so addictive and the downside is that it interrupts your body clock only adding to a bad night’s sleep. This leaves the door open to vulnerability of increased pain intolerance, fatigue, cognitive problems and so much more. Related article Fibromyalgia and Problems with Sleep.
Caffeine is often hidden in many beverages so it’s worth checking the label and limit to mornings only.
Lack of Physical Activity
There are days when even just the thought of physical activity is enough to make you turn a funny colour! It’s like a double-edged sword though when you have fibromyalgia pain raging through your body, making it virtually impossible to exercise, even though you know you should. The last thing you want or need is someone telling you to get active, but the fact is that lack of activity leads to more pain and slow recovery.
The less we use our muscles the more the deterioration weakens them which can develop into a condition called disuse atrophy. This causes the weakened muscles make simple tasks like cooking a meal or taking a shower extremely painful and totally exhausting. It really is a case of use them or lose them where you’ll reap huge benefits for taking some time for regular exercise. Stretching and keeping some form of gentle activity as a daily routine will avoid ceasing up and creating more pain than necessary.
It’s helpful to be aware of your limitations and practice the 80 / 20 rule – meaning not to go at it one hundred percent, in this case little and often is best. There are umpteen stretching videos you can follow like Qigong, yoga, as well as swimming (when we can) and there’s nothing better than a daily walk.
Sometimes we really can be our worst enemy when it comes to aggravating our symptoms, particularly neck, back and shoulder pain. Slouching, head thrust forward looking at devices, Tech-Neck straining and pulling on the neck and skull muscles restricts circulation and results with headaches and restricted movement.
There’s sufficient medical evidence that connects poor posture habits to many health problems including persistent pain problems. That withstanding, posture pain is often confused with fibromyalgia pain but the good news is that posture can be improved.
It’s worth noting that posture habits are mostly out of our immediate awareness but you can reverse this. A good start is to practice what I call a “self-check-in”. Begin with a few times a day to pause and just give yourself a bit of a whole body tension check. It’s surprising where tension can be hiding but we’re so used to it, we probably don’t notice until it turns into pain.
Tension, or tight muscles, is a good indicator that pain is inevitable and a self-check-in only takes a minute or two, but it’s enough to raise awareness to it and avoid any unnecessary pain.
Hyperalgesia is a common aspect of fibromyalgia, meaning that abnormalities in the body’s pain mechanism amplifies the volume and doesn’t switch off, hence any tension being held in the muscles might end up as some serious pain later. Once you’ve located a tension area, notice your posture and adjust it and take a few deep breaths to release any tightness. Over time you can begin to identify and reduce any pain inducing posture habits and in turn reduce fibromyalgia pain.
On good days when we’re lucky, it’s easy to forget about fibromyalgia, but then reality kicks in and it’s still there silently lurking, like a predator waiting to pounce! Nevertheless, it’s on these good days that we are tempted to go ballistic, catching up on everything on the to-do-list. We’ve all been there I’m sure, only to find that a few days later we have to pay for it when we’ve crashed in a heap with fatigue and raging pain – the worst of this is the knowing that we’ve done it to ourselves – again!
Knowing your limits and remembering to pace is easier said than done and how often do we forget to pace ourselves?
A useful tip is to write up a priority list and give each task a time limit you’re willing to give it. Stick to the list and take a rest in between each task, ticking them off as you go and reward yourself with a break and a well deserved treat. When you follow this regime, you’re retraining your brain to expect a dose of pleasure from the rest period and the brain repays the body by releasing dopamine, a “feel good” neurotransmitter. Practice makes perfect!
Fibromyalgia and sensitivity to stress goes hand in hand. The truth is that no-one can avoid stressful situations, they’re part of life and let’s face it, unaccountable pain is a stressful situation. Likewise, so is worrying about letting others down, having to take time off work, cancelling plans, feeling useless and unable to participate in life, carrying out everyday tasks, the list is never-ending. Fibromyalgia is an emotional roller coaster!
Stress, or more accurately put, the effects of stress on the body, is often amplified because of fibromyalgia where abnormalities in the pain processing mechanism, as well as neurological irregularities increase heightened emotional activity. This is a recipe that perpetuates the stress response (fight-or-flight). Simply put, the way we respond to stressful situations is capable of either making or breaking us.
Finding ways to manage the stress in your life is essential to reducing the aggravating effects it has on your symptoms. There are numerous ways to manage stress such as practicing breathing exercises, guided imagery, meditation, mindfulness and just about anything that helps you to relax.
You can’t be stressed and relaxed at the same time, so the more your body experiences the relaxation response, the better your resilience to stress and pain.
Too Much Focus on the Pain
Do you spend too much time googling fibromyalgia and getting caught up in a constant flow of negativity?
It’s understandable that it’s not a good thing to feel alone when you struggle with fibromyalgia or feel isolated due to our current situation with the pandemic, plus it’s also uplifting to support others. However, long term the danger is that it might be keeping your mind stuck on the focus of symptoms and may well unconsciously increase the worry and further rob you of vital energy.
It’s helpful to take breaks from this and find other ways to distract yourself. You’ve heard of “getting in the flow”? This can work for you or against you, it’s better to make sure your flow is taking your mind into a helpful state where your body will naturally respond to this in a beneficial way.
There are numerous reasons behind nutrient deficiency, the obvious is poor diet and eating habits. Too much caffeine and sugar are both nutrient robbers. The less obvious include dysfunctions of the digestion system, metabolic irregularities, stress, disrupted sleep cycle and various medications all rob the body of vital nutrients. Deficiencies will vary from person to person and periodically, but the most common in fibromyalgia include amino acids (protein molecule chain), Essential Fatty Acids, Magnesium, Selenium, Vitamin B complex (including B12), Vitamin C and D.
On a final note, this list is far from conclusive and inevitably, some days will be worse than others but on a positive note, every day is a new day.
Author Jok Saunders, founder of the Fibro Clinic South West