You have spent months backward and forwards with Doctors, numerous blood tests, and you’ve finally got a diagnosis. But the relief of having a name for all the symptoms you’ve spent so long struggling with is short lived when yo realise how little is known, and that there is no treatment for you. An ME / CFS diagnosis; What an M.E (CFS) diagnosis actually means for you & a breakdown of symptoms and next steps.
If you have just started on your ME or Chronic Fatigue Syndrome (CFS) journey this post is for you. Or even if you want to learn more about what this condition is and how it affects people.
The symptoms of M.E
The symptoms of M E are pretty far reaching, and on their own can in fact be indicators of many other illnesses. One of the reasons it can be so hard to diagnose. The most obvious of symptoms is the pure debilitating exhaustion that seems permanent and doesn’t dissipate no matter how much you sleep.
Other symptoms include brain fog, forgetting or mixing up your words, feeling sick, dizzy and disorientated, losing your balance & feeling like you have no spatial awareness, not being able to sleep, not being able to deal with noise and colour and feeling overwhelmed by people and sounds light sensitivity. As well as being unable to control your body temperature, IBS symptoms and digestive problems, and chest and back pain.
ME can also include elements of pain. Aching muscles and joints, twitching muscles, and fibromyalgia-type symptoms which can in themselves be exhausting. Fibromyalgia is where you have widespread, chronic pain, & a heightened pain response to pressure.
All these symptoms can come and go in severity, but are always worse when you are having a bad day. These bad days are often accompanied by feeling like you have the flu. Sore throat, flu-like symptoms, and even swollen glands. These are all common when your body is struggling.
So what’s actually going on in your body?
What causes M.E
Although doctors don’t actually know the exact causes of M.E for sure, causes include a series of things including a traumatic personal event such as a breakup or a family trauma, a bad / stressful relationship, a trauma to your body such as glandular fever or a major health occurrence, an over-stressful job where your fight or flight response is elevated over a looooong period of time …………………… or a combination of the above
More importantly , here’s whats going on in your body:
– huge adrenal fatigue
– body-wide inflammation
– an overactive immune system
– your body is over-stressed, overwhelmed & no longer able to cope with the amount of stress you have been putting it through. It’s reached breaking point.
This effects nearly every system in your body – nervous, endocrine, digestive, and immune systems. Your body is out of balance and depleted.
It needs rest, and it needs to heal.
What are you feeling after your M.E diagnosis?
You have been given a diagnosis but have you been left feeling lost and like you haven’t actually achieved anything but a name for your symptoms?. I’ve felt that Frustration & Confusion
If you’re feeling Sadness and a little down and depressed, turning to food for comfort and eating biscuits by the packet because you don’t know what else to do. But feeling worse afterwards. I’ve been there.
If you’re trying to do the most basic of tasks but cannot think straight, or keep forgetting and mixing up your words. I’ve had that debilitating Brain fog, I know how frustrating it can be to not be able to do the things you want because your brain is letting you down.
There is definitely an element of mourning a person lost when an illness like this knocks you off your feet and life as you know it brings to a halt. It is completely ok for you to feel anger, sadness, loss…
There is a complexity of emotions you will (and can) go through on the way to acceptance and moving forward.
Don’t stop yourself from feeling any of them. Your body and mind need to go through this process to come out on the other side. It’s part of your healing process.
And despite what the Dr’s say, you can heal from all this!
How do I know? Why am I telling you all of this?
Because I’ve been where you are now. I know all of those feelings and frustrations that you have right now. I’ve sat in numerous doctors chairs and been told I’m already doing everything I can….
And I refused to accept that this illness would be my story for the rest of my life. So instead of listening to conventional medicine. I started doing my own research.
Basic next steps to healing M.E
What an M.E diagnosis actually means is that you’re at the start of your healing journey. Knowing what an M.E (CFS) Diagnosis actually means is one thing, but that is only the beginning, and often Dr’s are not in a position to heal a patient, only to help them manage symptoms. But healing from M.E is possible!
As well as the advice from specialists and doing your own research. Here are some basic steps you can start to implement today, to begin your own healing journey:
1. Accept life has changed
A huge part in moving forward now you have a diagnosis is accepting that your world has completely changed and things are going to be very different. A lot of people, myself included, have a stubborn view that they can just continue on as normal and it’ll all be fine.
This may work for a while, but ultimately you are just taxing your body even more & you will end up crashing even harder. The best thing you can do for your sanity, peace of mind, and healing, is to start to work through all your emotions & work towards accepting the changes and what your limitations are for now.
That doesn’t mean that you are accepting defeat, or that you are giving up in any way. You are just saying to your body “I hear you. I’m slowing down & trusting you know whats best for me”.
This acceptance process definitely involves a period of mourning what you have lost. But ultimately accepting where you are now instead of trying to go back to the ‘old you’ that no longer exists will save you a lot of wasted energy and heartache.
2. Start a food & feeling Journal
This is pretty much exactly what it sounds like. Start tracking your days, what you eat & how it makes you feel, how you feel first thing and throughout the day, when you woke up & what time you went to bed, what you manage to do each day. Then at the end of each week reflect back & analyse.
See what’s working and what isn’t and make changes where you need to. I would also recommend you include adding some gratitude practice into your journaling. Make it a daily task to list 3-5 things that you are thankful for that day.
This tracking method will help you eliminate foods that make you feel worse or add you your inflammation, find out what your energy limits are, narrow down causes for your relapses & bad days, track and improve your sleep, and see where you should make changes.
In the long term it will also help you see how far you’ve come and what you have accomplished!
3. Learn what your limits are
Pacing and learning to use your spoons are things that you will most definitely go over with your Dr. or specialist, so I won’t go into huge detail here. But learning to listen to your body and knowing what your early symptoms are when you have pushed too hard and done too much (and finding these out early on), will help you to manage your energy. Both mentally and physically.
If you know that you have to do ‘X’ and that will use up 90% of your energy. Make sure that you don’t do anything else taxing that day. Don’t try to fit in A,B&C other tasks too, because you feel like that what you ‘should’ be doing.
Similarly if you find social occasions, more mental tasks, or travel draining and know you will need a recovery day afterwards. Make sure you are putting measures in place to manage your condition, your energy, and your days. This way your body can begin to heal and recuperate, instead of just fighting to get through the day and have nothing left to heal the damage.
This won’t be a permanent thing. Over time you will most likely find that you can increase what you are able to do each day in small increments. So try not to worry about what you can’t do now. But focus on the small achievements and what you are doing to make yourself feel better NOW.
Your journal (see no.2) can help you with this too.
4. Find the things that bring you joy
With that being said. Your mental well being is just as important as your healing. When you are limited to what you can do and achieve in a day it becomes even more vitally important that you are taking care of your emotions and mental state too.
Your emotional state and the energy you surround yourself with can either boost you up and aid your healing, or bring you down and reverse all the good you are trying to do.
When it comes to keeping positive it is the little things each day that make up a bigger picture and feeling of well being and happiness. Noticing the flowers and animals around you, enjoying the weather, listing to good music, watching something that makes you laugh, read, write, paint.
Even if it just for a short period of time each day, this is your time to experiment, to learn about yourself and this new version of you. To find out what things you can do now that you enjoy and bring you happiness.
It is these little things each day that will get you out of bed, keep you motivated, keep you moving forward, give you something to focus on, and most importantly give you things to be grateful for. These are the things you can record in your gratitude practice.
And making a habit to notice all the little things in each day that make you smile or cheer you up also works to keep you grounded in your body and focusing on the present moment. These are two powerful steps in starting a mindfulness practice!
5. Look into supplements to support your body’s healing
I fully believe that plants, nature, and natural supplements provide all we need for healing our bodies. This is a huge subject topic. But as your first steps I would recommend that you look into Adaptogens for supporting your adrenals and immune system, natural options for helping you Sleep, Pain management, improve Brain function, and general Immune support.
These bases will help give support to your body as it starts to heal and recover from the stress it has been on. It will help you manage the worst symptoms of your M.E. I would always recommend that you get a full blood work done with your Dr. first too, and ask for a copy yourself, to check all your levels of vitamins & minerals etc. and ensure there is nothing else you should be addressing.
If you want more in-depth information and to learn everything I have over the past five years, including specific information on healing M.E & chronic illness through natural remedies, nutrition & lifestyle medicine. I have something that will be perfect for you.
Visit my healing ebook page to find out more.
Although I have given some general information and steps as starting points for you here. If you would like to read more I have included a list of further blog posts if you would like to read more:
If you are also dealing with fibromyalgia I have found this resource helpful:
You can also connect with me at any time. Just add your questions below, or send me an email, I’m always happy to help!
There was nothing available to me when I was diagnosed 5 years ago. So I am hoping that by writing a bit more on what an M.E (CFS) Diagnosis actually means on a more human level this can help at least a few people out there find their next steps forward, and not feel so lost.