Post Trans magnetic Stimulation For Fibromyalgia 2014

Several months post Trans magnetic Stimulation

After TMS treatment I definitely noticed I  had some change in the way my pain was being processed within my body .
I would be able to walk to the car from inside my home and for the first time that small walk did not cause immense pain throughout my whole body.
My thinking ability was definitely clearer ,and for some weeks I could even say Fibro fog was gone !
I took less amount of pain relief medication and in particular the ones that were only kept for the intense flare ups were only now taken rarely.

The pain was still apparent and I was always aware of its presence but the intensity was so very different .

I found myself walking more often to which I was thrilled with as I loved walked and this had really decreased due to the nature of my pain .

If I had done too much my body would certainly still alert me and increase the pain but overall it appeared it was really making a difference in my daily life and allowing me opportunities that I had previously lost and was incapable of due to the pain .

It was infact so exciting I hated really sharing how much it had really helped as I felt a guilt within me that I couldn't share the result with other Fibromyalgia sufferers and also reduce their pain levels.

This change had been going along for a period of 6 weeks after the TMS trial for Fibromyalgia then one morning I awoke and suddenly like a bolt of lightening I knew the old familiar feeling that had once again slipped back into my body .
The overall full body ache I had that roved around every inch of my body ,made me struggle to move ,to get out of my bed, to walk ,to shower and to do all the daily tasks I had found easier for the past 6 weeks.

From that moment on my Fibromyalgia has stayed in a state of constant  flare ,roving from one area to the next and once again changing the way I need to look at how I move my body again , do certain things, pace myself but most of all ..... try to have a positive outlook and focus upon what I do have ,the things I treasure ,the love that surrounds me ..... and the hope that both myself and my family members have that ,one day I will find something that will bring new hope for those of us with this very challenging and somewhat debilitating condition .

The new hope may be in the TMS outcome from the trial that I participated in ..... in may take several years but there is always Hope ......

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 ....