One of the problems with M.E/CFS and FM is that there seems to be no common ground regarding which symptoms are normal with this illness. Everyday sufferers experience abnormal feelings in their body and brain and are left clueless with endless pain and suffering. This can make our condition worse by feeling alien and wondering “WHAT IS WRONG WITH ME? IS THIS NORMAL?” If that is you, I feel your pain. As an ex sufferer and now advocate in helping others with M.E/CFS I to got fed up with lack of understanding and support from the medical profession, outside world and even family and friends. Like you, I was sick and tired of being sick and tired. I will post my personal recovery story soon. The good news is there is more support and awareness around M.E/CFS then ever before.
Here are 5 of the most common symptoms that affect people with M.E/CFS/FM and ways to improve them. Keep in mind there is not a one-size-fits-all approach.. However, a multi-faceted approach is most successful with long term recovery from M.E/CFS & FM. (This article is 3000 words long and may be useful to print off and show to your local GP, family and friends.)
BRAIN FOG – tired-but-wired, cognitive disruption, inability to concentrate, reading a page of a book can be a challenge, short term memory loss and an overall feeling of fogginess in the head. Does this sound like you? This is a very common symptom of M.E/CFS and Fibromyalgia. One of the reasons being that because we are a not in homeostasis (healing state) our body is under constant stress, trying its best to function. Quality of sleep is usually diminished, so therefore the body is not in a consistent circadian rhythm sleep. This causes the body and the brain to not completely restore and recover their functions, including memory, cognitive learning and development. As the body begins to become more tired, so does the brain. Disrupted sleep patterns will leave patients in a “daze” for long periods of time. Constant fatigue causes severe tiredness, and the brain shuts off quickly after becoming tired. Here are some helpful tips to improve your brain fog.
– Routine/daily structure, combined with constant rest breaks and pacing, will help with brain fog over time.
– Improving quality of sleep at night time. Day sleeping should be diminished slowly over time to improve night time sleeping. This is where the body and brain do their best to restore and repair functionality.
– Nutritional food can play a role in brain development. Make sure you are eating consistently healthier whole foods that give you longer lasting energy and can improve cognitive function and alertness.
– Improving brain fog needs to be a long-term goal of re-introducing stimuli without overloading the brain. This can be done differently for each patient, so figuring out a specific plan is imperative.
-Work with your current situation and circumstances to improve your brain fog. Some days will be better than others, so you do your best. A work/rest ratio is needed to stimulate, and also repair and recover from each time you concentrate, as it takes energy each time you use your brain. Use a 1:1 work/rest ratio. Remember less is more to start with and you want to avoid overdoing it, which can cause a setback. A long term progressive plan is needed to keep improving your brain cognition and energy levels.
MUSCULAR ACHES AND PAINS – This is a very common symptom with this condition. Sore legs, achy muscles, joints and pains all over. This is caused by a number of things. One is the physical de-conditioning of the body due to illness. Muscle atrophy, meaning loss of muscle mass, can cause inflammation and aggregation of the muscles. This leaves patients with sore achy muscles and usually back pain. When a patient exerts themselves beyond their bodies current physical capabilities, the muscles cannot adapt to the physical stress placed upon the body. This equates to post-exertion malaise, which can leave patients in a flare-up or bed bound depending on the severity of overload. It can take days, weeks or even months to recover from a physical overload set-back. There is a fine balancing act when progressing with recovery. If you do too little your symptoms become worse, and if you do too much, your symptoms become worse. Finding your baseline is the key to decreasing symptomatic responses and managing overall health is important for recovery.
-Diet and emotional stress can trigger negative physiological responses in the body leading to muscle aches and pains. If you are trying to figure out what has causes your flare up or symptom, look at the overall picture.
-The body needs to be in a healing state, or at least in neutral state, to improve. This means that the work-to-rest ratio needs to be relative to each patient depending on the severity of their illness. Movement does not equal generic exercise.
-Movement could be simply sitting up from laying down. Daily activities such as walking around the house can be a starting point for some. Whereas others who have slowly progressed whilst maintaining health may be able to begin restorative movement exercise such as stretching, walking and other low intensity exercises that restore energy rather than drain it, and can incorporate that within their daily activities.
-Most importantly, a less-is-more approach needs to be taken initially, combined with rest and recovery.
-Avoid the BOOM and BUST cycle – Stop the pushing and crashing to reduce flare ups and setbacks.
-Quality of sleep plays a big role in terms of dealing with symptoms and setbacks. Again this needs to be an ongoing work in progress and needs to be assessed by an experienced health professional who can set you up on the right progression plan. It is normal to have these symptoms. Overtime as your health progresses, your symptoms should slowly dissolve. Remember – doing too much or too little will make you worse – find the in-between for you and stick at it.
SLEEP PROBLEMS – Irritability, insomnia, unable to fall asleep, un-refreshing sleep and tired but wired are all common feelings amongst people with M.E/CFS/FM. It is ironic that people with these conditions find it hard to sleep, even though one of the main symptoms is fatigue. Go figure. On a deeper level it makes a lot of sense.
When the body is in a dis-ease state, there is pain, irritability, stress and much more. It only makes sense that having an easy night’s sleep is almost impossible. The main problem with M.E/CFS/FM is because you are so tired all the time, most of the day is spent either asleep, resting or overdoing it. This leaves the body in a state of unknown, with no sleep routine or daily structure, the body doesn’t know what time it is. Getting into a good circadian rhythm sleep takes time but is needed for the body to rest, repair and function well. USA health expert Paul Chek says going to bed before 10 pm is vital for the restorative sleep. He explains that the best restoring time for the physical body is between the time of 10 pm and 12 am and the brain from 12 am til 2 am.
Waking up at the same time every day is important too. Sleeping in can actually cause more tiredness. Day time naps should be diminished over time, as this affects the quality of night time sleep. Depending where you are at, you may still need day time sleep due to energy levels and ill health, however as your health progresses try to get into a sleep routine that improves your energy levels, not one that leaves you feeling more tired/exhausted after your day sleep. Instead, rest breaks and restorative breaks like stretching and meditation can be added. Poor sleep affects our ability to function, leaves us feeling unrefreshed, lacking appetite, cognitively impaired and irritable. Physically our bodies become weaker and take longer to recover if our sleep is poor. Hence the importance of improving sleep quality over time.
-Getting into a good routine and structure that you can manage daily is the first step to improving your night time sleep as well as improving your sleep hygiene, meaning your environment where you sleep.
-Switching off electronics, dimming lights at night time, switch off and unwind.
-Avoiding stimulants and sugary foods and relaxing are all part of it, Stimulants are short term fixes which create longterm problems. Keep in mind stimulants are fake energy. You want to avoid relying on fake energy and start to build real energy.
-Stress and anxiety can disrupt quality of sleep, so seek help and guidance in those areas of your life that need working on, Journaling can be really helpful. This can help you go from a stressed state into a healing state where you are relaxed and calm.
-Decrease day time sleeping slowly but surely. If you are sleeping during the day and NEED to for your body that is fine, Try to sleep in the time of 12-3 pm. Sleeping to late in the day will upset your night time sleep.
-Resting and pacing is fine, however long deep sleeps during the day time will affect your quality of sleep and routine long term.
Sleep cycles can be reversed, make minor changes over a longer period of time to get the benefits.
DIZZINESS/FAINTING – This is a very common symptom with M.E/CFS and happens for a number of reasons. First, low blood pressure is common amongst sufferers. Symptoms may include light-headedness, dizziness, weakness, blurred vision, fatigue and fainting.
It is said that the main causes of dizziness apart from low blood pressure are stress, worry, pain, panic, dehydration, chronic illnesses and extended bed rest. By improving your overall health through specific work/rest ratio, pacing, nutritional intake, hydration and stress management, it can all improve. Make sure when going from laying position to take your time getting up into a vertical position to avoid major dizziness and fainting.
Another cause of dizziness its POTS (Postural Orthostatic Tachycardia Syndrome) where going from a laying down supine position and then sitting or standing to a vertical position will rapidly increase one’s heart rate. This can cause dizziness and also panic. Along with M.E/CFS there is no specific one-stop-shop when it comes to overcoming symptoms. However, changes can be made to improve one’s condition over time and these are not too dissimilar to treatment plans for M.E/CFS and Fibromyalgia.
According to wikipedia there are some sound treatment options that can enhance ones health. Read below.
• Drinking more water improves symptoms for nearly all patients. Most patients are encouraged to drink at least 64 ounces (two liters) of water or other hydrating fluids each day.
• Eating frequent, small meals can reduce gastrointestinal symptoms associated with POTS by requiring the diversion of less blood to the abdomen.
• Increasing salt intake, by adding salt to food, taking salt tablets, or drinking sports drinks and other electrolyte solutions is a treatment used for many people with POTS; however, salt is not recommended for all patients. Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension by helping the body retain water and thereby expanding blood volume. Different physicians recommend different amounts of sodium to their patients.
• Eating large meals, especially ones high in carbohydrates, can cause a reduction in blood pressure and exacerbate symptoms in POTS patients.
Whilst exercise has a bad name in relation to recovery, it is important to get the right advice when in recovery mode as one movement for one patient will be different for another. It is important to start with where you are at and begin with a less-is-more approach, accompanied by rest and pacing.
-Restorative movement that gives more energy back rather than depleting it is very important.
-Exercise is very important for maintaining muscle strength and avoiding deconditioning. Though many POTS patients report difficulty exercising, some form of MOVEMENT is essential to controlling symptoms and, eventually, improving the condition. Exercises that improve leg and abdominal strength may aid in improving the muscle pump and, therefore, preventing pooling of blood in the abdomen and lower extremities.
-Exercise tolerance is different for each patient and must be designed specifically for where the patient is at. A less is more approach must be taken in order to reduce setbacks and flare ups, and continue to regain strength and stamina over time. Certain modalities of exercise may be more tolerable initially, such as riding a recumbent bicycle or wading through a pool or simply static stretches from your bed depending on where you are at with your health. However, as tolerable, upright exercise may benefit the participant through orthostatic training. All exercise programs for POTS patients should begin with low-intensity exercises for a short duration and progress slowly.
ANXIETY AND SECONDARY DEPRESSION – These two are commonly misdiagnosed instead of M.E/CFS.
The issue here is that M.E/CFS/FM are invisible illnesses. Therefore, doctors and medical practitioners cannot physically see any problems. However, on a symptomatic level there are usually many. The problem is M.E/CFS/FM affects your entire life and leaves you unable to do what you were once able to do, emotions such as anger, frustration, sadness and depression are normal for this reason. Anyone who was once able to do something with ease, and then no longer able to do it for no apparent reason, would be emotionally upset about this situation. It is only human that sufferers feel a huge amount of distress and let down by not being able to do what they once could. Dealing with your illness as best you can, will help you come to grips with where you are at.
– Seeing a therapist, psychologist or coach can be useful. Getting specific help and guidance from someone who understands the illness is important so they can guide you on the right track. A common rule of thumb is “if you can’t wear it don’t share it” – meaning if the person you are getting help from isn’t a walking example of what he or she says they can help you with, then it is probably best that you stop seeking help from that person. Find someone you can relate to.
– Anti-depressants may be helpful. However, you must consult a doctor and a psychiatrist to determine what may or may not work for you. It is important that lifestyle adjustments are made in conjunction with seeking medical help
– Acceptance plays a big part in forming a recovery treatment program so you can work on where you are at and progress from there. Remember, acceptance is not resignation. Start with where you are at and move forwards from there. Seeking medical help with depression or secondary depression can be useful.
– Self-development, goal setting, gratitude boards and journaling can be useful to improve your mood and help with your depression.
– Support – asking for help may be hard, but it is important to communicate your need for help to your family and friends who love and support you.
Anxiety is also a common trait for those suffering from M.E/CFS. Severe anxiety can lead to panic attacks which brings an overwhelming sense that something really bad is about to happen, It usually causes a flare up and setback. Anxiety can be just as exhausting as pushing yourself too much physically, so it is important to get help if you are suffering with severe anxiety. Anxiety is usually a perceived negative thought about something in the future that has not happened yet. We then manifest the negative emotions, which either debilitates us before the event has happened, making us unable to move forwards or we stay in the horrible anxiety and are paralysed by it. This again causes digestive issues, lowered immunity, decrease in quality sleep, loss of appetite, extended excessive energy, decreased mood and libido, muscular flare ups and sense of uncertainty. Another major problem with anxiety is the stress response to flare ups and symptomatic response from the nervous system. This can cause a major set off and increase the chances of a setback or flare up. It is important to stay calm when symptoms do arise, so you and your body can deal with them in a way that will decrease symptomatic response and increase healing and recovery.
A few strategies moving forwards are:
• Seeking medical help with a psychologist or therapist to help you with your current anxiety and dealing with strategies to move you forward.
• Keeping a journal to become more conscious of your made up thoughts by writing down your worries and making a practical plan to overcome them.
• Writing down benefits of the perceived anxiety. This may say strange initially, but what happens with anxiety is that you keep associating negative thoughts to negative things, If you reverse that and see the benefit to anxiety just as equal to the draw back you will feel a lot calmer about the situation. It will be different for each situation however one example may be “Oh no I hope I don’t get anxiety. I hate anxiety.” Instead you could say “the benefits of having anxiety is that it makes me more alert and conscious, it makes me learn how to breathe deeper to relax, it helps me to figure out a new way of thinking for me” etc., etc. The hardest part about anxiety is that the anxiety we build up in our heads isn’t even real, it is just perceived. We can breathe a sigh of relief each time we realise, “oh hold on a second, this hasn’t happened yet, and probably won’t happen as long as I breathe, relax and get through it”.
• Movement, stretching, breathing and low intensity exercise can be great to reduce stress and anxiety and increase energy and vitality done in the right amount.
• Nutritionally staying hydrated and fuelled with whole foods to give you longer lasting energy.
• Improving sleep hygiene and quality – get to bed before 10:30 pm.
• Avoiding stimulants like coffee, alcohol and other drugs.
• Having a set plan to keep you on track and moving in the direction you want to, is very important to developing new habits that are positive for your life.
Remember what you focus on most comes true. Know that it will get better, and start to focus on the things you can control.
SUMMARY: After attending the worlds largest M.E/CFS conference in USA in 2014, it was suggested that self help, management tools to improve recovery are the most successful treatment plans for long term management and improvement for M.E/CFS and FM. What you have to remember is that M.E/CFS & FM affect every area of your life. Working on just one thing at a time will have a minimal impact of recovery as there needs to be a holistic focus on recovery to better health. We know for fact that the immune system is weakened and lowered during M.E/CFS & FM and even post viral syndrome, therefore it is important to focus on all aspects of health and recovery to make the best progress. Whilst it does take time, it is important to know that recovery is possible.
There are a range of other symptoms associated with M.E/CFS/FM. From weight gain/loss, nausea, sore throat, swollen glands, sore eyes, sensitivity, irritability, lowered immune system, gut intolerance, constipation/diarrhoea and more. It is important to have a holistic approach to recovery, rather than just cope with symptoms. Management of symptoms is important, however focusing on a holistic overall improvement of M.E/CFS/FM as a path to rebuilding health will help diminish symptoms long term.
Recovery is hard, but not recovering is harder.
If you’re ready to find out more about how you can start your road to recovery, check out our Online Recovery Program: https://cfshealth.com/online-recovery-program/
It’s a great starting point to getting back on track with your health, and realise that you can actually get better and start doing the things you love again.
Post your common symptoms below and what has helped you with your recovery!
Article written by Toby Morrison founder of CFS health.