Just diagnosed with CFS. What now?

Are you just diagnosed with CFS (Chronic Fatigue Syndrome) and asking "What now?", "Where do I start?"
If you are newly diagnosed, this healing article contains some thoughts from me.
These are simple key steps to put in place.

These tips will also be helpful if you are in one of the following situations.
If so, scroll down to the 10 tips.

• I feel ill but don't have a diagnosis.  I am always exhausted. Or I am 'tired but wired'.
• I have a diagnosis of long covid (covid long haul),  fibromyalgia, or any chronic illness.
• I have had Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis) for some time, and want to check I still have these basic health management steps in place.

I have called this a 10 tips for CFS checklist. But it has got longer!

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Relief or disappointment when just diagnosed with CFS?

Many people just diagnosed with CFS feel upset by the diagnosis because it is a condition for which there is no official treatment.

Others, like myself, go so long without a diagnosis, that it is a relief to finally have a label to give to people to explain why you can’t do what you could do before.
I felt empowered by the diagnosis to take the illness seriously, to take action and to try alternative healing methods.

Please know that whilst there is currently no cure for Chronic Fatigue Syndrome, there is much you can do to manage symptoms or to improve your quality of life.

Many people recover from Chronic Fatigue Syndrome. I have not recovered but I have gone from having very severe CFS for 14 years back to independent living. I am able to talk, self-feed, walk around the house, and go out once more.

If I had known what I know now I would not have got so ill.

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Many people recover from Chronic Fatigue Syndrome / ME

'No treatment' does not mean 'no recovery'.

Some people are diagnosed with CFS fairly soon after the symptoms start.
They learn to rest and go on to make a full recovery without any treatment.

Other people experience significant CFS recovery through alternative healing methods. This can be early on or it can be - as in my case - after many years. 

Others pursue alternative healing and make a total recovery.

Please remember that there are people with MOST illnesses, including cancer, who have experienced recovery.
Do not give up hope.
Look for a balance between hope for a better future AND finding a LIFE with the level of health you have right now.

Postponed diagnosis reduces the chances of CFS recovery

 I cannot reassure you by saying that I had a quick and easy recovery from CFS. I didn't.
I have now lived with CFS for over twenty years.

If you are just diagnosed with CFS you may find it depressing to hear that I have stayed ill so long. But please know that the following factors were present:

• I did not get diagnosed for 18 months - probably I had been ill for longer. (I was diagnosed with ME - Myalgic Encephelomyelitis.)
  
• In those 18 months, I was working in a stressful job and pushing myself hard - I didn't know I wasn't supposed to do so,
• People in my life reacted badly to the illness and most of my relationships fell apart.
• I had no secure home in which to live, and had to move three times in those first 18 months of illness.
• For the 14 years of very severe Chronic Fatigue Syndrome, I relied on council carers. The level of care was inadequate and did not allow me to rest.
  

I had a lot going on to make recovery from CFS/ME more challenging.

I hope that your circumstances make it easier for you to pace your activity.  Pacing is when you find the balance between rest and gentle activity that helps you to heal from CFS.

But if your circumstances are just as hard or harder, please know that I am still alive and kicking!

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'Just diagnosed with CFS'... Katherine T Owen's 10 tips for CFS

For someone saying ‘I think I have CFS’ or someone just diagnosed with CFS, here are 10 tips to get you started.

1. Manage your diet.
   On the link above I give some simple steps that can be taken. You might want to investigate further to make more dramatic changes to your diet. In addition, you may choose to take natural healing supplements.
   
2. Lower your level of activity to see if the Chronic Fatigue Syndrome symptoms reduce.
   Don’t just do less to the point where you are still doing as much as you can. Do less than that.
   If possible, you want to find a level of activity which is low enough to be sustainable. The body knows how to heal itself, but we get in the way by pushing it so hard.
   Click through for an article on finding exercise you can still do at your level.
3. Pace your activity. You do this by alternating rest and activity. Also, switch. Switching means to  alternate between activities which use different muscle groups or between physical and cognitive activities.
   Take the illness CFS seriously. Don’t try to take it in your stride. Change your stride.
   
4. Engage in relaxation techniques to keep the nervous system under control.
   Relaxation CDs and DVDs are not expensive and can be done daily or throughout the day.
   I am having great success with my own recordings which I hope to make available in the future.
5. Be very kind to yourself.
   For example, you might deliberately say “I love you” or 'I am here with you' to yourself throughout the day.
   We can be hard on ourselves when living with illness so it is important to counteract this.
   Check out this article on giving yourself permission to cope with the changes of chronic illness.
6. With ANY chronic illness, the shock of illness and the fear of symptoms can exacerbate the condition. Get help to manage any fear. This is SO important and I will be writing more about this in the future.
   For example, EFT is a simple and cheap alternative healing method which you may find useful.
   
7. If you have the funds, consider paying for additional private testing.
   If you receive a blood test which shows abnormalities, it can help you to take the illness CFS seriously and help you to feel calmer if you encounter disbelief from others.
8. Alternative healing methods.
   You may choose to visit a practitioner in an alternative healing method.
   
9. Self healing
   I recommend that you find a self healing method for emotional, physical or spiritual healing and make it a part of your daily life. You are living with an illness. You need support. You are the one person who can provide that for yourself each and every day.
   
10. Consider joining a support group, either locally or online. If there is no local group for CFS, you might look for groups for ME, Fibromyalgia, Lyme Disease, or Spoonies. All these illness share various symptoms, including a disabling level of chronic fatigue. The groups may be happy for you to join even with a different diagnosis.
    Alternatively, you may find it unhelpful to spend time with others with the same illness, so find out what works best for you.
    

Back to add three more tips that have really helped me.

1. Somatic exercises and other exercises for healing from trauma.
   Click through on the link to see a selection.
2. Recognising loneliness and cultivating connection 
   See below.
3. Try targeted amino acids, such as GABA and Tryptophan. 
   Unlike most supplements, some people have a positive response within 10 minutes, so they are worth trying. 
   See Trudy Scott's blog for more information. www.everywomanover29.com.
   

Recognising loneliness and cultivating connection 

Research is now showing that loneliness is a bigger factor in illness than smoking.

This is a tough one. If you are housebound or bedbound with chronic illness, to a certain extent you may either have connection or not have it.
Ask yourself if you have an unused opportunity for connection. If so, please reach out and take it.

If not, consider finding an online support group of people with the illness you have. 
Being in the presence of a calm supportive other is a powerful way to bring calm to your own nervous system.
Online connection doesn't feed our biology to the same extent, but is still of great value.

My own journey has been one of having very little in the way of a calm other, and very little in the way of a connection that I can rely upon. 

My approach has been to be willing to know what I consider to be the most important and fundamental connection – the spiritual connection.

We live in fragile human bodies. There is only one relationship we will never lose or leave, and that is the relationship with our true Self, our spiritual Self, an aspect of what many of us call God.

If your emphasis is on spiritual healing – it is a wise emphasis :-) – you might want to check out the website www.a-spiritual-journey-of-healing.com which talks about my spiritual journey.

On this website, there is a prayer to ease loneliness for those with ME/CFS or other fatigue related chronic illnesses.

More on the psychology side of things, I have done a great deal of parts work.
Click on the link for an exercise for healing the loneliness of your inner child.

I hope that the Chronic Fatigue Syndrome information on this website will help you find at least one practical step you can introduce to meet a symptom with compassion and start the road to finding health within and beyond illness.

You are stronger than you know.

You can take the next step and you can keep moving forwards.

Wishing you health both within and beyond illness,

Katherine

Katherine T Owen runs this website - www.HealingCFSME.com.

She is author of the booklet of 15 poems, Be Loved, Beloved
(Read it in paperback at lulu.com or on kindle)

Healing Articles Relevant to Just Diagnosed with CFS

• Move from Just diagnosed with CFS to collect your free ebook on moving through the stages of acceptance of illness.
• When people find out you are ill people may ask you What causes CFS? Although the cause is unknown, you can still give an informed answer. Click through for some suggestions.
• Or click on the link below to read about 'how is CFS diagnosed?' to see if your symptoms match the list.

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© Katherine T Owen. All articles on this website are copyrighted. I am delighted if you choose to click above to share this page on social media, but please do not copy, print or otherwise use without my permission. Thank you. Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary. Disclosure: On some pages, there are affiliate links, for example to Amazon. If you click and then buy within a certain time period, I will receive a small commission which goes towards the running of this healing website. Abundant thanks :-)