Half way journey with Trans Magnetic Stimulation ( TMS) trial treatment - 2014

Its now two weeks in to my Trans Magnetic Stimulation  (TMS) treatment .

Its still an unusual sensation and this has not changed or decreased in any way and still continues to feel like a pecking bird above my eyebrow.

I still feel the odd sensation like pins and needles and wave of coldness washing over me but that seems to be it in its severity ,which is amazing !! Im so relieved ....

I have during this time to contend with my new suprapubic catheter and it has been very painful and uncomfortable ,keeping me awake and in general more bothersome than the treatment and my Fibro symptoms ,which is a rather big statement .

After treatment I decided to navigate my way to a close by casualty to get it checked out ,only to realise that I don't really have any navigational skills ,or body strength to walk but it needs to be done .... with instructions in my mind ,I proceeded slowly and cautiously around the block until I found the bus stop I was directed to .

As I ventured through city streets upon the bus I just hoped it was taking me to the direction of the hospital ...The driver turned and indicated that my stop was next ,unfortunately this was the incorrect hospital .... he was then kind enough to say oh its a long way a way .... but told me ahead of time when I was due to get off ,thank goodness..... little did I know there was another walk ahead of me ,by this time my fibro was moving right through my whole body ,and my supra pubic sight was on fire ,I was walking so slow .... but finally arrived and was promptly seen to .

After much testing and discussion I was able to head home later that evening with future things to think about .... many things whirling in my head that made me feel confused and saddened I just felt awash with fatigue and emotion .

Was looking forward for the new day and feeling brighter and anticipating less pain ....
This next day was my last day and was my half way point of treatment !!

Last day of TMS.....
Feeling brighter and focused on my TMS treatment and how its effecting me ,well after a huge day of emotion and of physical activity yesterday I thought compared to usual my body actually responded better than it would have normally .Given this day my body had somewhat recovered from yesterdays walking was remarkable for me ..... yay.... so excited so far with how my body is responding .....
After treatment I completed my regular book of paperwork which records pain and emotion  indicators for the past week ,mine definitely differed from the previous week .... Im feeling somewhat positive at this stage ....

F is for ..... a slight bit of freedom ......

Week 2 - Trans Magnetic Stimulation for Fibromyalgia-Tuesday

Some definate slight change and decrease in overall pain.

Currently making my way toward treatment and having my small break at the mid way point,time to rest and re charge for second part of tram trip and the treatment its self.

Heading off again for stage 2 of my daily trip and toward what may be a better and more positive future.

Sitting on tram and soon approaching destination treatment.... a wave of sudden pain engulfes me like a fierce wave rolling from head to toe .
Oh no.... my brief encounters of slight changes had possibly been too optimistic? im suddenly shocked and once again saddned by the level and intensity overcoming me....

I complete my pain scoring today to a higher level and feel as though I can only slump into the recliner to begin treatment today.In need of an immediate distraction from the treatment I request to listen to my music today....for i know today without it the sensation will be additionally intense.

Greatfull for my music and its calming effects I soon complete my session.Im soon homeward bound and out again in the icy blustery wind.

Pain continues to rise steadily and is now making its way into my ribs as well.Every inch of my body is covered in hot packs as i simply try to relax and distract myself watching tv.

Am feeling naseaus with pain intensity and my new addition of supra pubic catheta is also painful and uncomfortable too...feeling washed out by the day I take my weary self and multiple hot packs to bed for a well earnt rest...A new day will bring new things...

F is for..... faith...in what the new day may bring...

Day 3- TMS trial for Fibromyalgia

Day 3- trans magnetic stimulation trial

Each day although I know how it will feel I slide into the recliner with some apprehension.

The machine is today started a higher level and soon moved to it full strength.For me today I can say although it is not painful I felt immediate shock of its full force.

My eye brow quickly jerked around and my eyes watered somewhat,although not painful the sensation is today nearly overwhelming,I wished it would soon end with each interval...

With each interval my body was over come with a strong wave of goosebumps and coldness... again nothing painful just another sensation.

As I left treatment and embarked on my public transport trip back home,to my current home away from home.The blustery  wind penetrated my skin and made its way directly to my bones.

 Pain was immediate and engulfed various parts of my body.Teeth chattering and sheets of
 ice landing upon my joints I await the incoming tram with desperation.

must have  jumped on he wrong tram out of desperation it turned down another street,several blocks from my destination....I jumped off and navigated my way home on foot.
Icy wind penetrating  my being I pushed myself to continue  the walk until i arrived home into the familiar warmth of a home retreat.

My body although cold to the bone,and my usual cold weather response had quickly made its way  rippling through me.... I finally warmed,rested had taken some pain meds.... the continuing usual flare did not continue.

The pain meds,warmth and rest left me feeling a high level of fatigue and whole body ache,but much to my dismay I imediently noticed the level of pain did not increase. For me in my 5 years  having this condition this was the first time that the pattern of pain changed.

The evening wasnt the evening or intensity that my daily routine normally represents...it was more of a subtle pain.... until the early hours of the morning arrived...i was sharpley woken with the familiar sharp and nagging chest pain that usually resides within me....the overwhelming pain that increases without question or reason and prevents sleep or even a peaceful night.

Morning didnt come soon enough,as darkness faded from both body and sky  it was finally time to begin a new day of treatment......

F is for..... finally..... a slight change....and a small glimmer of what may be....

Day 1&2 -Trans Magnetic Stimulation Trial for Fibromyalgia

The purpose of this trial is to investigate the use of repetative  TMS as a treatment for the symptoms of Fibromyalgia.Experience has shown people with Fibromyalgia may have an inbalance in the excitability or activity levels of the cells in the brain.TMS appears to work by changing the excitable the cells of the brain arewhich may help reduce,or alleviate Fibromyalgia symptoms.Several studies support the use of TMS in the treatment of Fibromyalgia,however these effects are usually only brief,in this study we will trial a longer treatment coarse to explore wether the effects of TMS can be extended.
This insert is taken from Participant information sheet/consent form version 4.Monash Alfred Psychiatry Research Centre.

I arrive to begin treatment with a mixture of nervousness and excitment.After finalising a load of pain questionaires I was taken to my treatment room.

I was required to lay reclined in a comfy chair while the lovely clinical nurse which is what he was referred to took me through the process verbally.

It appeared to take along time to set the machine up precisely  to suit my head.Measurments were taken and   light tapping began as the correct positioning was identifying where to position the head piece of machine correctly.

It was then time to begin,i felt an overwhelming surge of unknown rise within me as a tear briefly came to my eyes surface.

Within a moment quick sharp motions began tappin g on head in short bursts of sequences.

With each sequence  i was asked if the intensity could be increased.The sensation was very unusual and nothing i had exeperienced before .it feels like a woodpecker bird pecking at you and becoming stronger at each interval.

Here is the image of my machine used for this treatment....

Trans Magnetic Stimulation trial for Fibromyalgia lead up...

The past couple of weeks have whirled by full of buisiness,uncertainties ,I find myself awash with overwhelming fatigue ,excitment and the new unknown.

I had mixed emotions when i had discovered I had been accepted into the first Australian Trans Magnetic Stimulation trial for Fibromyalgia.My initial thoughts were of relief that after exploring so many varied treatment options and spending a huge amount of time researching options,trial data etc that my determination had paid off for myself and my beautiful supportive family.That finally we as a united front have another option,although an unknown one at this stage I feel as though without the perseverance to continue to search for options this new window opportunity would not have presented itself.

I am truely blessed my family and extended family have fully supported me along the way and although this treatment will present geographical challenges everyone is fully supportive in hope for positive outcomes.

Let the new journey of hope begin.

My Fibro world update ...2014

Its been so long since last blogging my fibro fog had taken hold and it took a long time to even work out how to log on here again ...

Well here I am to just write about how my world of chronic pain has been travelling .
Since last November things appear to have spiralled out of control .I recovered somewhat from bladder surgery and slowly returned to my norm with the exception that my bladder no longer functioned ...

I had no sensation whatsoever to have a wee ,no matter how much I drank or no matter what was tried medically to induce this .

It is now 6 months later and I am managing with my new additions of  an indwelling catheter and urinary leg bag.
It all sounds shocking and friends and family have certainly been both shocked surprised and saddened by the event.
It seems to me it is certainly a daily challenge with additional tasks to do they take longer ,they require my hands to do more ,my legs to support more and my mind to be always aware and extra vigilant with managing it .

The constant knowing that it is there and at times pulling and feeling of additional discomfort .Some days the leg straps  of the bag is a tight pressure I find hard to stand and between pressure and pulling there are some days there is no release from the agitating discomfort.
Nights are interesting when I change the bag to the night bag, it resembles an A4 size and tubing much longer to hang from my body to the floor for safe  and  free flowing drainage .
come morning time there is another long, precise hygienic procedure necessary to even begin the day .That's of coarse on top of what's occurring with my Fibro ridden body .
Additionally then you need to consider what is appropriate to wear with the leg bag ....
Most of my skirts and dresses sit just above my knee so I have had to alter what I wear and keep this is mind each and every day ,this way I ensure that it is not obviously visible ,as it does hang just below my knee cap .

I have now adjusted to the daily routines involved but at the same time this appears to have provided a constant flare with my fibro .My whole body aching constantly ,tightening of trunk like the vice is being tightened every hour that passess.The ever constant shoulder, arm and hand pain which is unfortunately increased with attending to my bag requirements .

So for now trying to manage and move a little forward ,my steps seem to be moving backwards and the pain only increasing as each day passes.
I have tried some significant dietary changes which have been trailed for several months,unfortunately this has not decreased any pain levels .My pain specialist has now reached the end of his suggested list of medications and we are now in discussions about treatments that are non pharmaceutical .
He has discussed the option of intracranial magnetic stimulation ,similar in its approach as an MRI but working on the specific part of brain that causes pain .It has not yet been used for a pain condition alone so we are working through the process to see if I may be able to access it for my fibromyalgia pain.

I am following up with the NIM clinic which is National Integrative Medical Clinic where they use
use  evidence based ,conventional and complementary medicine .I am very interested in the IV vitamin therapy which is administered by IV ,bypassing the intestine where many problems are preventing it from being absorbed ,its then administered straight into the cells .

So trying to get back to a sometimes smile ,and believe that I have a couple of options ahead of me ,providing me with a little hope for the coming months.

F .... is for ..... Freedom ... that I so seek ....

Back Fat and Paleo Diet - Day 2

I'm at some stage most of you that have a chronic illness or a zest for wellbeing would have at least heard of the Paleo Diet.
It actually really became cemented in my head on the weekend. I actually felt well enough to go out and you all know what a challenge trying clothes on is....when your out shopping...In particular if your like me and tend to pacrastanate alittle....there may sometimes be several shop stops and trying on.this particular day my energy level was up some and I felt pretty good...for me anyway...I was pretty excited....so off I went with loaded enthusiasm that I was actually going to do  a little retail therapy....

With excitement within. Me....and a baby spring in my step....I headed to the shops as I was in desperate need of some new bras this was definitely a need!
The changing wasn't so fun as my limps felt like concrete weights as I tried on several bras....the effort was slow and tedious...It was then it really struck me as I looked at my body's profile...in an enormous mirror  which made it seem so much more unsightly...Im talking about what I call "back fat"hideous amount of fat bulging from underneath my brain straps...It saddened me to see for the first time my fibro ridden body.....revealed in all its glory.... In that unnecessary... oversized mirror!  Had also accumulated this....over time...Thanks Fibro for for the inability to do enough cardiovascular to drop off the
weight....I think that we eat very well,eating fresh things from garden and being a coeliac with IBS.

Concious of
what goes in my mouth and that I need to move my body each day....these gentle ball exercises are more my style with stretching exercises...walking...10min sessions on the exercise bike.As you can see these arnt the type to drop any access weight.
So....this was the straw that broke the camels back..."back Fat"and I have now started the Paleo Diet.


Day one and Immediently missed my GF rice porridge with cows milk...and the other many cups of tea that get me through the day....even if they are caffeine free....well that was just the beginning.ng the milk was difficult...and so I swapped to some herbal tea...no sugar...no milk...and for brief moments felt proud....but still craved my milk.


I do like to indulge in my dairyproducts and decided that I would purchase Coconut milk as a substitute..so i used it as a substitute in my evening cup of tea....it wasn't distasteful and I actually could get used to it.


I was thinking about how I had progressed through day 1 and just kept thinking of health and wellbeing in particular for my weight and Chronic Fatigue.

It was 2am in the morning and I became horrifically sick....I felt like if I moved I would vomit, at one point passed out and the whole night became a blur of naseaus,dizziness and pain throughout my body...

I tried to do some positive self talk when I fell out of bed to get ready for work...I didn't even make it to the kitchen...with sickness throughout my body...the dizziness overwhelming me...I fell to the closest couch...and stayed there for some time..


Today after slightly recovering I made my way back to bed with assistance from my hubby.In bed now have stayed for the duration of the day....day 2 paleo diet....and the hope of future well being....and a reduction in back fat...
AM hoping the significant change in diet did not bring on an upheval of sorts...
I hope tomorow is a better day...less pain....and fatigue...and overall feeling of unwellness....



F is for....Fibromyalgia.....and of coarse....back "Fat"