Cramp Fasciculation Syndrome an autoimmune story

*** This post has been updated, please see the notice at the end.  Thank you***

The last week or so has been an immense struggle for me, recovering from the flu has affected me more than I realised which makes me think that my health condition is immune-related.  I actually did not want to write about this today, I wished I could be more positive and give more upbeat advice but the truth is that I have good days and very bad days and coming down with the flu has seemed to exaggerate my symptoms ten-fold.

So what exactly is wrong with me, then?  Well, to be honest no one actually knows but I have been given varying diagnoses and I have chosen the one which seems to reflect my symptoms the most.  According to a Neurologist at St. Bart’s London I have a ‘minor’ form of Peripheral Nerve Hyperexciatability disease called Cramp Fasciculation Syndrome or Benign Fasciculation Syndrome, you can find out more information about the symptoms of CFS here and here.

I accept the fact now that Cramp fasciculation Syndrome may be an auto-immune disorder because of the huge spike in my symptoms prior, during and after coming down with the flu.  I also often experience a worsening of symptoms just coming up to menstruation and wonder how this could be linked in to the immune response, some experts argue that PMS (pre-menstrual stress) can create a vulnerability in the immune system due to the change in hormones and the build up of toxins ready for release.  This does make some sense to me because my symptoms tend to subside going into menstruation.

I also notice that stress in general aggravates my symptoms and this may also explain why I feel so much worse pre-menstruation and when I am feeling ill.  There is much to be said about the negative effects of stress on our overall well-being, chronic stress has been found to suppress the immune system which in turn can give rise to a number of modern day illnesses that we experience such as cancer and auto-immune illnesses.

So the question for me is two-fold.  What do I do now to alleviate my symptoms and how do I keep on trusting and relying on God when my body wants to play up?  If you’ve researched a little about Cramp fasciculation Syndrome, you’ve probably found that there are different types of pharmaceuticals available to try to suppress or manage the symptoms, back in the day prior to God’s revelation concerning my body being His vessel I was prescribed something to enable me to sleep, but it worked short-term, in the long-term I experienced some negative side-effects.  So I am very adamant on trying to deal with Cramp Fasciculation Syndrome or whatever it is naturally.  I have tried a number of natural supplements including a Spice supplement which cured a previous patient of CFS but it didn’t work for me, I have prayed about this extensively that God will open my eyes to see, my ears to hear and my heart to understand His desire for me in this journey.  I have a few things which I currently do now but will post about them at a later date.

I do believe that God will heal me and this is part of my affirmation, (read the First day of my life) but I really do need the prayer and support of my brothers and sisters in faith to get me through this time.  Hopefully, next time I blog I will have something more upbeat and positive to say.

Update August 2014.

It has taken 6 years to be diagnosed with peripheral nerve hyperexcitability disorder (PNH) and to find out that it is actually an autoimmune condition.  During this time I have learnt how to manage this illness without any drugs and have had some fantastic days being symptom free as well as some rough days, mostly I operate at a 7 out of 10 – I am aiming for 9 by the end of the year.  I have been prescribed anti-epileptics, however since receiving them a couple of months ago I have probably only taken 5, mainly because I would rather not take medication and secondly I am able to do well in the most part without them.  I use diet, natural supplements/herbs and faith medicine to support and heal my body.  Please visit my CFS page to find out my top tips for kicking CFS/PNH where it hurts.

Update February 2017

Since my last update I am happy to say that apart from the sweating symptoms the fasciculations are mostly gone or not noticeable unless I am stressed in some way. I rarely take my medication and when I do it’s usually the minimum or close to minimum dose and that’s only if I am pretty stressed through not being good with my diet (gluten, corn, dairy, chocolate) or have fallen ill but, saying that, I caught a cold this week and I have had very little if any symptoms at all! I take this as a sign my immune system  is settling down and healing and I truly thank God for that.

I share this with you to encourage you and give you hope, when I first started my healing journey I didn’t believe that I could be where I am today. But today I DO BELIEVE and I believe that there is even more to come.  I would focus on building up your belief around healing as that will take your mind off your body and allow it to begin it’s healing process.  I don’t know if you are a man of faith but my trust in the goodness of God has been so important in decreasing my stress load and allowing me to heal.

Update December 2022

This year I gave myself permission to finally declare I am in remission not just to myself but out loud too. It’s been quite a journey to get here, I’ve done so much inner healing work and I personally believe that it’s this which has brought me here.

I am a very different person to the woman who started this blog, my relationship with “God” has changed and I embracing the fullness of who I AM rather than letting fear of what other people may think, feel or believe be my god.

I got married and became a mum and medication wise I started taking LDN a few years back. I was also using CBD but stopped after being pregnant and have not returned to it since then.

Again, sharing this to give others hope because I know how difficult and scary this journey can be.

I think it’s taken about 12 years to get here.

Love & Overcoming Resistance

it’s really hard for me to stay up to date on across social media, I spend a lot of my time on Facebook now and my new website but I do recognise that people do find me here too.

I know I’ve said it before but I’m going to try and stay more up-to-date with this blog, it was my very first online space for ministry so in a way I think it is also what YHWH would want.

For the last 7 weeks I have been doing a new weekly theme on my blog and Facebook group and page – this week’s them is love.  I’ll share Monday’s post with you now.  If you want to follow along you can either do so on my page or group.  

How to overcome Negative Beliefs that are Keeping you Stuck

We all suffer from unhelpful, negative beliefs but, some of us suffer more than is necessary.  Have you ever been in a situation where you had to make a life-changing decision and was faced with two choices: a bad choice which seemed like the attractive easy option and the best choice that looked tough to swallow. It might not be a life-altering situation in the sense of the heavens opening or life and death stuff – but you’d be amazed at how even the smallest choices that we make can have a knock on effect on the overall path we take.

In psychology, namely Cognitive Behavioural therapy (CBT) there is an argument that your thoughts will dictate your footsteps.  This ties in with Biblical truth, as Yeshua taught us the importance of our beliefs in co-creating our reality and then there is the favourite quote of Christian who favour CBT:

Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect. (Romans 12:2, ESV)

I have seen this truth in my own everyday experiences, the lies that we tell ourselves can easily become reality if and when we let them take root in our actions. So I’m really excited to start my Advanced practice Diploma in CBT shortly! (Continue reading)

http://faithhealthpotential.com/2016/01/15/how-to-overcome-negative-beliefs/

 

Ancestral Nutrition from a Non-Paleo Perspective

I personally know how difficult it is to be a Christian and come face-to-face with Paleo eating, so it was so refreshing for me to read this guest blog post from Alicia Wood a certified Holistic Health Coach from the Institute of Integrative Nutrition.  Much food for thought here on how to eat for health and well-being.

I was reading Chris Kressler’s newsletter the other day and he spoke of how he believes in Ancestral Nutrition and the Paleo Diet. That got me to thinking; I also believe in Ancestral Nutrition but from a very different perspective than he, from a Christian perspective.

The Paleo argument is that we evolved, started as meat eaters, then gradually developed agriculture, that agriculture is “modern” but we should be “primitive” and not eat grains. The Paleo Diet eschews grains. Chris Kressler says he feels better if he eats no grains.

Now, first of all, if you feel better when you eat no grains, then, by all means, eat no grains. I believe we are all bio-individual and if someone feels worse from eating grains, better when they don’t, then they should obey their body’s wisdom.

Feel like a Christian version of Manifesting Grace? Try this one

Hey there friend,

today I want to let you know about two really special things to help you along your healing journey.  I have just finished hosting a meditation challenge over on my Facebook page and I wanted to share it with you too.

You may have heard that Oprah and Deepak were doing a meditation series on manifesting Grace, I had been seeing this up a lot online and even posted by other Christians so I thought that I would do some research.  So… I wasn’t really surprised to find that there definition of Grace was totally different to the Biblical definition of Grace:

Grace is the benevolent, powerful, unwavering energy of the universe that guides you to the best version of yourself. When you shift into a state of gratitude, grace opens itself to you – it responds in turn by bringing you even more to be grateful for. Your day-to-day becomes increasingly effortless, more enjoyable, and more vibrant. It is a blissful, life-affirming state of being that is available to everyone, all the time. ~ Source

So I decided to do my own meditation challenge on ‘Manifesting Grace’ by focusing on 10 different fruits of Grace.

Free+ PD training: “Keys to a More Vibrant Life”

I am so pleased and excited to be running a seminar/workshop this upcoming Tuesday (28th of July) and I hope that you can join me.  Here’s a bit more info about it.

11 Signs you Probably need to Change your Diet especially if you have an Autoimmune Condition

I received a message from someone asking me if I had noticed any improvement in my health since changing my diet, the answer is yes I have.  But I also know how hard it is to not only take that step to change your diet but to keep on going when the chocolate or whatever it is you really like is calling your name.  So I decided to create a video outlining 11 signs that I’ve noticed in myself which indicate that a change in diet may actually help relieve autoimmune symptoms.

The Secret Place and Motivational Manna

I’ve decided to share extracts from my Reflective Meditation book “The Secret Place” across several of my online spaces, one of them being here.

Today I want to share the first meditation from the book it’s aptly called

Day 1 – “My Secret Place”

Messianic Legalism, Christian Liberalism or something else?

NB: This is quite a long post so, please excuse me as I process some thoughts.  This post also links to earlier ones on Grave verses the Law here and here.  There are also some interesting links at the end of the post.  Shalom x

I’m spending Shabbat (Sabbath) at home today, as I have done off and on since January 2014. I was on a journey and knew I was being called to sit at the feet of Yeshua.  My beliefs were slowly diverging from that of the congregation I was in, as they were moving ever deeper into a place of legalism I was seeking and needing to experience a different truth and intimacy with YHWH. The thing that I really miss about that congregation was the love and sense of community there, there is a definite hunger for the people to have a deep knowing of who YHWH is however the enemy is at work there also.  Just before I left YHWH used Eke and I to preach on several occasions, messages of the love, grace and restorative power of YHWH over the man-made doctrines and legalistic rituals found in many Messianic and mainstream churches. However, when it was time to leave I left but with that congregation still holding a piece of my heart.

I recently heard that a ‘law’ had been passed in the church, I have no idea whether it’s true or not. The law is that they should not say God, Adonai (I think) or amen. I was asked if I wanted to go back there to visit, my answer of late has been no – I don’t want church politics, or ambitious striving to be seen/heard, my Sabbaths are waaaaaayyyy too precious to me – to blink and ask myself where the day has gone to. So today, I’m at home again and I’ve been reading God’s Word and reflecting about the struggle of grace vs the law within the Messianic church and the wider Body of Messiah.

Umami, Amines and PNH (Part 1)

It seems so unfair, over the last weeks PNH symptoms have flared up again and I have had to go back to the drawing board to try and pinpoint what may have triggered it off.  I could put it down to all the stress of moving during the most frantic season of the year, things not working while the world was on holiday not to mention trying to stop the flu that’s trying to grip the country in a head lock trying to grip me too. I could, but I need to cover all bases here especially taking into consideration that it has also waxed and waned during this time.

So as part of my move into our new home I invested in some new bits and pieces to ramp up my healthy lifestyle gig.  A pressure cooker to start making my bone broth in, some gelatin to heal the gut and liquid stevia so that I could wean myself off the sugar. I was good for the first week or so and then BANG!!!! Irritability, spasms, aches, tears, tantrums – OK I also cheated because when I feel bad I also eat rubbish – which I know has to stop – God help me please.  But I have learnt enough about my body to be able to pick up what is and isn’t affecting me and begin to read how. Something was different and I prayed that it wouldn’t be the gelatine. I wouldn’t mind giving up the stevia, but the gelatin – I could use that to make all kind of wonderful things – plus it replaced the eggs which I can’t eat at the moment plus it was making my hair and nails grow.

The Give and Take of Mutual Relationships

Humans can be very self-centred, this is really highlighted within relationships whether with man or God. Yet relationships are or should be about reciprocity, mutual benefit or put another way give and take.

We are OK when it comes to taking but not so much when it comes to giving. We find it much more easy to receive and very difficult to release.

I see this a lot in the online world, people are used to taking. There are free offers everywhere and we collect and hoard them, store them away but they hardly see the light of day if at all. They are like trophies or tools that we collect just in case we need them.

But when does taking stop being taking and start to become stealing (taking more than what was given/intended)?