Since July 2011, I have found that many people stumble across this website because they have typed in a term related to Cramp fasciculation or Peripheral Nerve Hyperexcitability Syndrome.  The Cramp Fasciculation Syndrome post has been visited nearly 500 times (last checked 5th November 2014) so I know that there are sufferers out there who are searching high and low for treatments or anything that can be used to manage their symptoms (latest CFS/PNH posts here).

My heart truly goes out to you because I too have scoured the forums.  No matter the illness, it seems that people fall into two camps: those who are afraid, depressed or reconciled to living with the disorder and those who are not.  I’m in the camp of people who believes that what has a start must have an end, and I stand firmly in the belief that CFS is not incurable.

To be honest, I noticed symptoms of CFS from a young age but it would come and go, it wasn’t until 2008, that it hit in full force and never went away.  Nevertheless, my faith in a loving and just Father, God and Saviour has given me the hope, courage and strength to make it through day by day and the faith that my complete healing is just around the corner.

Tips on Overcoming Peripheral Nerve Hyperexcitability

  1. Drs are not the Experts – it took me 6 years to get a diagnosis and be thoroughly tested for antbodies and EMG.  Much of this time was spent fighting the system because they didn’t believe that there was anything wrong with me.  During this time I guessed that the illness was autoimmune because stress and illness made it worse but it was nice to finally have it confirmed.  Be prepared to fight to make yourself heard.
  2. Feeling greatTake a natural approach – the good side of being rejected by medicine was that it enabled me to seek out natural ways of managing my health.  A change in diet plus increased faith and positivity helped to reduce stress and build resilience allowing my body to rest and begin to recuperate.  I mostly operated on about 7 out of 10 through a combination faith medicine, diet and natural supplements/herbs and there have been days when I have had no symptoms at all and felt truly healthy and alive.
  3. Deal with underlying issues and traumas – Periperhal Nerve Hyperexcitability is a desease of both the nervous and immune system most especially the autonomic nervous system which regulates the stress response.  This means that any unresolved traumas and experiences put excess strain on both your immune and nervous systems causing them to go into over drive.  I have found that journalling, counselling, singing, dancing, writing, meditation and anything creative and expressive allows me to let go and process much of what I would otherwise hold on to (Type C and D personality traits).  I have also learnt how to be more self-expressive and assertive which is also very important for soul-healing and nurturing.
  4. Be Kind to Yourself – Illness is always difficult for you and those around you, it is so easy to want to give up, to be afraid, get frustrated, angry, disillusioned, depressed or bitter.  The key is to accept these emotions, embrace how you feel in the moment but don’t allow yourself to get stuck there.  You are not perfect, and God doesn’t expect you to be, all you can do is try your best whilst accepting that at times your best will be much less than what you would desire it to be.  Healing is like a marathon not a sprint, it requires pace and perseverence to reach your end goal.  If there are people around you who are judgemental or condemnatory distance yourself from them, or if you need time to be alone go for it.  Create an environment both internally and externally that promotes healing.
  5. Drop the God Complex – even if you don’t believe in God, read this anyway.  Generally people who fall ill with autoimmune conditions tend to have negative personality types e.g. Type A’s tend to have a God complex because they feel they need to do everything by themselves.  Learn to let go and trust in the One who created you and the universe to bring you to a place of total healing and well-being.  Really difficult to hand over those control reins I know, but you need to understand that you are potentially jeapordising your healing by trying to control everything around you.  I can’t begin to tell you how much peace I have experienced by learning to surrender my Life to God through His Son, Yahushua (Jesus) – yes, I’m a Christian.

If you have gained some insight on how to move forward from these 5 tips then you might want to check out my wholeness ministry here.

Do you have any questions or comments, please contact me or leave a comment below and I’ll get back to you.

 

 

8 thoughts on “My Journey with CFS/PNH

  1. I want to thank you for your wonderful comments on my posts! Especially the one that I was responding to a quote! YOU got it!
    I am so excited about what the Lord taught me that night. About Worship and how that is service-and what that all meant! I think for the first time I really saw so clearly so many things! Things that maybe I’ve thought or taken for granted or not truly explored because I just accepted-whatever, I tell you it has been glorious for me. And of course now I see even more clearly the incredulity that people will not accept what a God like our God is has done for them, is for them, will do and be for them. Eternity is a long time. I can’t believe that no one really thinks about it!
    I do know now from my own experiences w/Satanic attacks just how strong that ole Devil is! But I also know how great and much stronger my Lord God and Father is! Hallelujah!
    I know that this episode with meningitis was exactly that! But the Lord gave me Isaiah 41 9b-13. He said He has chosen me and called me. And from there, every sentence was an answer to my prayers, just hours before!! That I was NOT to be afraid. He had my hand in His Strong Right Hand. Imagine with your eyes closed, the God of the Universe, holding my hand!!! And once again, telling me don’t be afraid. At least this time He didn’t have to come to the ER and sit on the floor with me!
    But isn’t it wonderful that He would? and not just for me, but for any of His beloved? What a great God we worship!
    I have been on the phone w/writerwannabee-Diane. We have been friends for a yr now. She has helped me so much w/my blogsite and made suggestions to help me. Today we talked though of her MS and her being diagnosed and all the symptoms. I called her because I got my records from the hospital from the meningitis visit. Imagine my surprise to find out I had 4 time too much protein in my spinal fluid! I asked my primary about it yesterday. She responded, didn’t anyone talk w/you about it? Then she told me I needed to see my infectious diseases specialist for answers. That appt isn’t until Tues. So of course this detective has been trying to find out what is going on with my body. Finally I called Diane for some answers to questions about spasms that I have in my legs and arms that no one has been able to help me with. When we added the spasms and the the tingling I always have, the headaches and finally the spinal fluid count, it was kind of obvious to both of us, that I have all the symptoms of MS. In fact, she said that she had almost talked to me about it a couple of times based on my postings.
    I feel like I have put a huge puzzle together! and maybe have some answers. I also know that this is why God is moving us to Atlanta.
    Where better could I get help? But certainly not here, the two neuros I saw kept saying I “needed to talk to somebody”. I said I talk to the Lord and my husband. Whoever else could I need to speak to? of course, they wanted me to see a pyschiatrist. Which is why the quote was so true and important!! Get me now?

    1. Hi Cindy, it was a pleasure to stop by and read about what YAH is doing in your life. I think it’s fantastic about your move and the little bit more info you told me just confirms that He works out everything for our complete GOOD – He is awesome in every way!!! I have to admit that it does concern me the number of people presenting with MS like symptoms, for me it either means that this is just a symptom of a dying world or it means that YAH is just using this as an opportunity to glorify Himself through His Children. I prefer the latter perspective!!!

      Thank you for subscribing to my FB page, I really hope that it will be a blessing to you and everybody who reads it. If your new neuro confirms MS there is one doctor who was cured of it, I can’t remember her name but she had to totally change her diet. I think I might have linked to it on this blog, if you would like the link please let me know.

  2. Hi Florence, I really like how you have laid out your blog. It is beautiful to the eye and for the soul. Your passion to help others and for God is prevalent throughout. I look forward to reading more.
    Kristina

  3. Hello, I have a strong sense that I may have CFS and it has just returned one week ago after having left me entirely for several years (3 years or so). But before the remission, I had it for maybe 4 years. I am now beginning to search for a Neurologist that specializes in muscles. But I have not found one near me. UCLA medical center has a real good department I read. I am now going to give my vast supply of therapeutic essential oils the test. Since I am just starting, I am a long ways to discovering what will work to rebalance my body’s internals. I have looked to website like http://www.everythingessential.me for possible leads on how these volitile oils from plants can help. I will also look into Pubmed website for white pages on anything about essential oils and my ailments.

    If anybody in this setting has tried these natural therapeutic oils to success I would like to hear it.

    Edward Y. drduffuss@aol.com

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