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.

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9 thoughts on “Cramp Fasciculation Syndrome an autoimmune story

  1. I am 45 yrs old and male. I have had this condition for going on ten years. My muscle twitches are mainly in my calves, but they can be seen during stress in my eyelids and other major muscle groups. My feet will cramp from this condition from time to time. I have had many blood test and nerve conduction that all came back negative. I am currently seeking treatment for a spinal neck bone spurs that are impeding on my spinal cord slightly. I have the idea that this condition is caused by our bodies ability to process the chemical reactions that cause muscle contractions. I cannot find a doctor who seems to care about why these twitches occur. If you have something that seems to work for you please let me know. Thanks, Shannon

    1. Hi Shannon,

      I thought deeply about what I would say to you before replying hence the delay. The first thing I would like to say to you is “Welcome”, this space is as much for me as it is for you or anyone else experiencing a chronic health condition. It’s my desire to be real about what this means but to provide hope and information for dealing with and overcoming these health concerns through God’s grace based on what I learn along the way.

      The second thing I’d like to say is “Sorry” because I don’t have any answers I am as lost as you are but I am relying on my shepherd who knows the way and I am trying my best to be obedient to Him and to allow Him to lead me to my healing place.

      The third thing I would say to you is “Have faith in God”, it sounds easy to say I know but I also know how difficult it is to put into practice; but in order to get through this we need hope at least that there is an alternative, to this end I would like to redirect you to some articles I have written which may be of some assistance to you.

      Lastly, if you still felt you needed something practical I would tell you to try possible medspice or Kalawalla and Licourice, the first has had some success with CFS and the 2nd with auto-immuine illnesses in general. I would also tell you to check back here weekly for any updates on things I have found beneficial for me on this healing journey.

      I really hope this is helpful to you.

  2. Hi Florence,

    I have read a couple of your posts and I am touched by your faith in God in the midst of your struggles.

    Praying that God will continue to guide and lead you closer to Him and give you wisdom in your healing journey.

    Blessings in Him,
    Dolly

  3. I am a 46 year old male,I have broken c-5 and have L-2and3 deteriorating,I first started getting hit with diaghram cramps about ten years ago(broke my neck 22 yrs ago)during the start of a crab season.right when I was stressed to the max,bam excruciating pain,i could make it better with stretches,but they would hit me like an electric shock and just double me up.I have just learned to deal with it,then met a chiropractor that turned me onto mineral substitutes,that worked for a couple years and am now up to 3x the dosage to try and stop this.My left eye twitches,my toes are in almost constant state of cramp,and if i even look over my shoulder or use my stomach muscles,cramp,pain.I’m a self employed person and do not have health care,this is about to take my livlihood away,what the heck is wrong with me?,D

    1. Hi Derl, I would be lying if I said that I know what is wrong with you I’m not a Doctor and even Doctors don’t like to give diagnosis without seeing the patient! If I were you I might consider a number of roots such:

      – a complete change of diet, I would recommend Dr Myhill’s website as it is full of info that might help or trying the Blood Type diet
      – getting your bloods fully checked again for mineral and vitamin deficiencies
      – assessing your stress levels and seeing whether it’s related to stress hormones etc. An adrenal stress index test would be a good starting point here.

      I’m sorry I can’t be of more practical help but I’ll be praying for you.

      Shalom to you

  4. Hello Achama,
    I have had Cramp-Fasiculation Syndrome since 1994. It has been getting worse in recent years despite being on medication. I know it is auto-immune in etiology.
    Over the years I have been told by physicians on multiple occasions they can find nothing wrong with me. This is discouraging because I am in pain. Just knowing that someone else has had the same experience is helpful. I plan to follow some of your suggestions on a holistic approach.
    Namaste
    Richard

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