CFS must be one of the trickiest medical conditions out there. There is no definitive test available for diagnosis and symptoms often chop and change at will. It would be fair to say that managing CFS is a full-time job and a very challenging one at that!
CFS impacts people differently and everyone will experience different symptoms, different levels of wellness and different time frames. I researched all of the CFS guides I could find so I could build a list of the best coping strategies that I hope will help you on your journey.
1. Find A CFS Friendly Doctor
Unfortunately there are still some medical practitioners out there that believe CFS is a psychological illness or practitioners that just have very little understanding of the condition. The sooner you can find an good doctor the sooner you can begin to treat your CFS and any other underlying co-existing conditions that you may or may not have.
2. Manage Your Medical Info
Keep a history of all your medical tests and appointment notes in a folder, set up sections in the folders for “Articles,” “Medical Appointment Notes”, “Medical History,” “Current Medications,” and “Test Results.” . Keep track of your symptoms as well so that you won't forget to advise your doctor about any new changes you are experiencing. Keep a list of potential treatments and drugs (medical or complementary) plus any research you have seen that you would like to discuss with your doctor.
3. Get Yourself A Tag-Team Partner
See if you can get a friend or loved one to act as your health advocate and come along to your appointments. Sometimes with CFS everything can be very confusing due to brain fog, a health advocate will make sure you are getting listened to by medical professionals and also ensure you get the most out of your appointments by not forgetting to discuss anything!
4. Getting Different Opinions
Don't be afraid to get a second or even a third opinion from other medical practitioners. You may be very happy with your doctor which is great but perhaps another doctor may pick up on something that your doctor has missed or they may present you with a different treatment approach that you would like to try.
5. Get Your Diet Right
People with CFS often have different food sensitivities. A good idea is keep a food diary to help you identify which foods help you and which foods disagree with you. Remember that there is no perfect diet for everyone, we all have different food sensitivities. I avoid gluten, dairy and soy and this helps me however other people with CFS can eat these things with no issues.
6. Add Himalayan salt to your drinking water
People with CFS often have low blood volume, adding salt to your drinking water boosts blood volume, improves your hydration, gives you a mineral boost and also can help with energy levels. Doing this will benefit most, especially those who suffer from POTS (Postural Orthostatic Tachycardia Syndrome).
7. Have a fresh juice or smoothie each day.
This is an easy way to cram lots of much needed nutrients into your body.
8. Protect Your Ears
Sound sensitivity is very common with CFS. I buy the same foam earplugs that workman use, they are cheap, comfortable and effective. I even put them in when I have visitors come around that speak too loud, I just explain that I have sensitive ears and they understand.
9. Protect Your Eyes
Light sensitivity is also very common with CFS. Don't be afraid to wear sunglasses inside if you need to, just pretend that you are a celebrity for a while.
10. Surround Yourself With Positive People
Being around negative people or people that cause you stress can have a negative impact on your body's healing ability, try to distance yourself from negative people as much as is possible. Remember that you and your health are your number one priority, not your friends issues.
11. Open Communication
Let your friends, family and loved ones know what life is like for you. Perhaps get them to watch the movie "Unrest" to gain a better understanding of CFS. Over your CFS journey your true friends will be revealed and they will be there to support you all the way and make the effort to stay in touch with you and see how you are doing. You may lose contact with some friends who don't make the effort for you but you probably didn't need those people in your life anyway.
12. Lose The Booze
Alcohol and CFS do not mix very well at all, some CFS specialists say that alcohol intolerance is a
signature symptom of CFS. Alcohol can have a negative effects such as causing poor sleep, liver inflammation and dehydration to name a few, so for now it's probably a good idea to stick to the herbal teas and water.
13. A Sleeping Body is A Healing Body
Avoid stimulants like caffeine before bed. Create a healthy sleeping environment by keeping the room at a comfortable temperature and removing and light and sound disturbances. Try not to nap in the late afternoon or evening as this can make it difficult to get a good nights rest. Finally, consider supplements and medications to help you sleep, more info click here
Gentle movements and stretching helps with circulation around the body and prevents muscle wasting. Even if you are bed bound, movements such as rotating your hands and moving your feet back and forth can help. Listen to your body and stay within your limits so you don't have any ill effects. If you can't move at all just focus on some deep breathing for a while.
Research shows that patients with CFS have issues with their Autonomic Nervous System. Breathing more deeply and expanding the diaphragm stimulates the Parasympathetic Nervous System and influences autonomic status (in simple terms deep breathing calms and balances our nervous systems). It's also interesting to note that energy medicine traditions, such as qigong, believe that slow abdominal breathing is critical for the balance and flow of energy in our system.
16. Mindfulness Meditation
CFS causes changes to the immune system and makes the nervous system "wired" which leads to fatigue. An excellent "no drugs" way to calm the immune system is through mindfulness techniques. Mindfulness is a set of skills for healing, intuition, insight, calmness, focus, resilience and hope that you can develop to counter the stresses that chronic illness brings. You can literally "train your mind to promote healing". Mindfulness has a positive flow on affect into every aspect of a person’s life. More info click here
17. Find A Healthy Support Group
These groups can be a good source for information and advice on managing your illness. They also provide you a chance to share your CFS experience with those that understand first hand. Make sure you find a group with a positive outlook and healthy vibe as opposed to a negative group where it can sometimes become a competition of who has the worst CFS.
18. Consider CBT
The central reasoning in Cognitive Behavioral Therapy (CBT) is that our interpretation of a disease's symptoms modifies our reactions to the disease in ways that can amplify or worsen the condition. A lot of people have negative comments to make about CBT programs and it hasn't worked for many people HOWEVER it has worked for some. Personally I did a CBT course and it didn't improve any of my symptoms apart from making me feel less stressed and calmer. Do your own research and make your own mind up about CBT.
19. Accept The Illness
The more you try to fight the illness by pushing your body past its limits, the longer it is going to take for you to recover. I have read countless CFS recovery stories and the common theme with them is that they said they "rested and relaxed their way back to good health", once they accepted that life was different for now and resting and health was now top priority, they started getting better.
20. Set Goals Without Attachment
What do you want to achieve first? You may want to get out of the house for a walk, enjoy a hobby or even brush your own teeth. Even though you want to achieve all of these goals, none of them will get done if they are all given priority. CFS/ME can be long journey. If you set small realistic goals for improvement and meet or even exceed them, you will feel better about your journey. Set these goals without attachment and don't beat yourself up if you don't achieve them, you can always try again at a later stage.
21. Rebuild Your Ability To Concentrate
A common characteristic of CFS is brainfog and an inability to concentrate on spoken, written, or visual information. Exercises such as crosswords, puzzles or games can help rebuild your concentration. Good quality rest can help you focus better too. There are also medicines and supplements to help with cognitive dysfunction, more info click here
22. Manage The Pain
Pain including headaches, muscle aches and joint pain can be one of the most debilitating CFS challenges. Treating pain should be a top priority in any CFS treatment program. Treatments include over the counter medicines (paracetamol and ibuprofen), massage, mindfulness, heat treatments (hot water bottles, heat packs and warm baths), cold treatments such as ice packs (do not apply to a single area for longer that 20 mins), chiropractor work and acupuncture.
23. Yoga, Tai Chi And Qigong
These are slow, gentle and integrative exercises. Even just a few minutes of practice can trigger the relaxation response and lower stress levels. Always make sure you stay within your limits and don't overdo it.
This is vital. Pacing is the act of breaking down the total amount of work you have to do in a day into manageable bits and staying within your limits. Only do your most pressing jobs, or those which you have energy for. By pacing your daily schedule, you can mix periods of exertion with periods of rest, and avoid a physical crash or mental collapse.
25. Make Some Money!
If you are able to use the internet then chances are you can make money through online surveys. There are many companies out there that pay you money to fill out online surveys on various topics and industries. They don't pay very much but it provides you with a sense of achievement, you can do them at your own pace from your bed/couch and you can use the money you make for supplements or other treatments.
26. Heal With Music
Music with theta frequencies help to activate the body and mind's self healing processes. The
music itself just sounds like relaxing background music. You can find free options for healing music on youtube if you search for "healing theta music".
27. Find Some Fun
If you are house bound or even bed bound there are still some activities that you can do to enjoy yourself. Check out this post here for enjoyable things you can do around the house.
28. Avoid Stress
Many doctors believe that stress could be a contributor to CFS symptoms so minimising stress is a must. Avoid watching things on tv that are upsetting or shocking including some news articles and high drama tv shows. Also try to avoid arguments as much as you can, especially about your health situation. If you do have to resolve conflict try to do it without shouting.
29. Avoid Triggers
Try to identify things that exacerbate your symptoms. Many people with CFS have dietary, environmental or chemical sensitivities. When you identify these things, you can start living more comfortably. Some are avoidable, like certain foods and chemical/smell sensitivities. The weather isn't avoidable but at least you can look at the weather predictions and try to manage better.
Keep a journal to vent any frustrations that you may have, it's a great way of getting stuff off your chest. Also keep track of any progress you have made or things which you have achieved, this will have a positive impact on your journey.
Many studies have been done showing scientific proof that gratitude promotes good health and healing. Either write down 5 things that you are grateful for at the end of the day or have a gratitude partner who you share your daily gratitudes with each day, you can hold each other accountable this way. You can be grateful for anything really, a kind act that someone has done for you, something good that you read or saw, for simple things such as green trees and clean fresh air, or perhaps you have had a rough day and are just grateful that you made it through.
31. Shop Online
All sorts of things can be purchased online, even groceries! If you feel tired you can just save your basket of goods and go back to it another time to finish your shop.
32. Stools and High Chairs
Standing takes a lot more energy than we realise. Using a high chair in the kitchen is useful when preparing food and beverages. A shower stool has made my showering experience a pleasurable one instead of a stressful one where I'm concerned about passing out.
33. A Pillow Under The Knees
When you are lying in bed or on the couch this can relieve the pressure and pain in your legs. I find this really helpful for my heavy painful legs and surprising comfortable to sleep with too.
34. Be Open To Different Treatments
There are many different treatments out there that have helped people with CFS but these same treatments have also not been able to help others, it's confusing! Do your own research on various complementary treatments and see which one you may like to try. Discuss with your doctor before beginning any other treatments. Both medical and supportive treatments discussed here.
35. Make a flask/thermos of tea
Of whatever hot or cold drink you prefer at the start of the day. This will last you all day and save having to get up more often than you want/can during the day. This is also a great way to help keep you hydrated.
36. Small Folding Tables
Consider buying a small folding table to go on your bed. It can make it easier to use things such as your laptop and can also make eating meals in bed more manageable.
37. Natural Herbal Oils
Some are great for calming, relaxing and sleeping such as lavender, camomile and rose-bud, valerian. Some oils are energising such as citrus, eucalyptus an peppermint oils.
38. Fresh Air
Sit outside for a while each day if you can, your body will will thank you for the oxygen and this will help your Vitamin D levels plus also makes you feel like you have actually left the house. If you are unable to venture outside make sure you open your bedroom window during the day.
39. Recovery Stories
Reading these are great way of promoting hope and inspiration. They will give your journey a boost in the right direction.
40. Natural Beauty Products and Household Cleaners
Using these will stop more toxins getting into your system and they will also assist you if you have multiple chemical sensitivities. A ready made household cleaner is a mixture of white vinegar, water and a couple of essential oils (plus it’s more environmentally friendly).
41. Dry Skin Brushing
Get a dry skin brush and do this before your bath or shower. The idea is that you run your hands or a brush up (always up) your body towards your heart. This helps stimulate the lymphatics and helps eliminate toxins as well as helps shift lactic acid in the body (which is some of the reason for the pain in your muscles).
42. Ask For Help
Don't be afraid to ask for help from friends or family to help you with daily tasks. You may be surprised to find how willing they are to help you on your journey.
43. Be Your Own Biggest Cheerleader
Stay strong and keep going. Each day you make it through is one day closer to a recovery. Go easy on yourself and treat yourself with the kindness that you deserve.
Wherever you are in your healing, taking small steps to strengthen even one aspect of your journey can make a real difference in moving you toward a healthier future.
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