There are so many posts on here, I find it difficult to keep up ~ But a few have stuck in my head and so I felt I just wanted to add a few things from my perspective..and not in any particular order or indeed covering all aspects.. just sharing...so bear with me...
We are all sharing our thoughts and issues on life with this condition ~ some are more extreme than others, good days, bad days ~ Fibro takes no hostages... And after being challenged with this debilitating CONDITION... ( I dont like the term disease or syndrome ~ disease to me means that there could be a cure, yes there is a dis-ease to our system but disease relates to a particular issue or function that is specifically related/clustered and we all know that there are varying degres and not all "fibromites" have the same or concentrated depth of those issues at all times... And for some like me are diagnosed and challenged with other "less abilities" ~ I like to "diSregard" the DIS.... As for syndrome well syndrome is a complex group of symptoms that collectively indicates or characterises a disease, psychological disorder, or other abnormal condition.
We are NOT abnormal ~ Fibromyalgia can strike anyone at any one time. We are beautiful people who just happen to have a "condition" which affects a multitude of areas ~ most being pain, exhaustion, walking,sleeping, in fact our ability in activating our usual range of mobility due to PAIN.. etc etc.. for sufferers we know what these are and they can often be very confusing. Some of us have been recently diagnosed, some long time sufferers... myself its since 2007 but looking back I can see an onset of "symptoms" of this condition, whereby in my thoughts they were collective in " antagonising" the FMS term.
It is interesting that we are all sourcing and sharing information which may or may not help. I have tried many many things and will try many many more ~ and in these cases what works for one does or may not work for another and I thank you all for sharing your ideas and story etc.
We are NOT Mad, or insane, or lazy, or good for nothing.. even though we may feel like that at times ~ again the negative self talk can come deep from ourselves, we just dont need it from anyone else. Each day is a battle ~ and yes not one day is the same, the planning or looking forward to things seems non existance as we simply do not know how severe the collective symptoms will strike us. We are good at change, for change is on a daily basis, sometimes hour to hour ~ So for me I have learned to go with the flow and accept that whatever the day brings or the way fibro ( and my other conditions) are affecting me I will do MY BEST.
in a recent post someone mentioned the Bowen technique study in America.. I checked the site but again even this appears to be misleading or the particular person/persons as a non "fibromite" is mis-informed. And whilst I am open to any alternative therapy and have tried most, and belief in the balancing of mind, body, spirit, I feel alarmed and dismayed at this study. One issue is that it often refers to "them" meaning those with Fibro... we are not a "them"..netiher are we "these folks" .
I quote a particular paragraph from this particular site some other aspects...
Some common characteristics of the firbo personality ( note their spelling mistake... oh my now I have fiRbo personality???)
Everyone I interviewed for my study had a type A personality. They always overextend and overcommitted themselves. They pushed themselves through pain for others. They don’t listen to their body telling them to stop and rest. They have trouble sleeping. Sometimes this is because of the pain; often the reason is just not being able to fall asleep. They do odd things when everyone else is sleeping at night; cleaning the house, laundry, watering the lawn. To them this behavior is normal. They are hypercritical of others and tend to be negative and confrontational, and they often alienate those in their limited inner circle, including their Bowen Technique practitioner. Now, in fairness we might ask the question “what came first the chicken or the egg”? Are they this way because of their pain and frustration of not healing, or did this personality type create their condition? Common sense says it goes hand in hand.
One consistent feature that you will notice about their appearance is a facial expression of bewilderment, sadness, and tiredness. Simply put, they look beat up.
Personality???? Hypercrytical, negative, confrontational???? and I note referring to that "did this personality type create their condition"
Which again implies it is a mind factor which we now know that it is not.. it is a recognised condition... please dont let me start on the "common sense" bit or indeed my facial expressions!
There are other suggestions through this study... and to me this is pure fabrication...or dis-illusion! Or pure ignorance! I for one was not involved in this study and there is no way shape or form that results from any testing on myself would have concluded this...
So the Bowen technique is really about relaxation and taking responsibilty for self healing.. well dont we just do that.. We have sought Medical help from the practioners and look to what can help us on a personal and individual basis, we are in our own bodies and know of our limitations.. it suggests counselling therapy, meditations, are they the first to "think" of this... etc etc
"they need to take responsibility for themselves and not overdue anything and they needed to focus 2 hours a week on meditation or some form of rest/quiet time. They were also encouraged to do a 5 to 15 minute MILD exercise routine daily"
Yes meditation is wonderful ~ I meditate frequently, it is a part of my being, yes stress can exagerate the condition ~ its like fight or flight... and really our bodys are stuck in this mode.. it is not recognising when to release ~ that that particular pain from that accident or trauma has past.. to me fibro is holding on to that pain, it is a signature of the trauma... and yet everyone to some greater or lesser degree has trauma... we are emotional entities... and yet not all are then challenged with fibro. Overdo, over task ~ Anything that we do trying to work through the pain, overtasks our bodies, we continue because our mind takes over and things need to be done! Even using walking aids are overtasking or simply create pain in other parts of the bodily muscles. As a single working parent with NO outside family support ~ I do this every single day.. oh yes I would love to just rest on a white fluffy cloud in the hope of rejuvenation. Is that on prescription?
Next is the statement of and I quote" Another reason for the isolation is they are in bed a lot. Due to their limitations, relationships are strained or non-existent"
What???? Mmmm not me, Again a collective labelling putting each one of "they" as to those with fibro in the same bed... excuse the pun!!! Perhaps thats the reason for strained relationships!!!
Fibromyalgia is a MEDICAL CONDITION... It is of UNKNOWN CAUSE AND shows up in a multitude of symptoms affecting different number of parts of the body
Research has shown that people with fibromyalgia have abnormalities in their nerves - they are more sensitive to normal pain signals compared to people without the condition. So neuro transmitters can play a huge part. In addition, people with fibromyalgia have been found to have difficulty achieving a deep sleep state, hence hindering the repair of energy ie exhaustion,fatique as well as we all know that PAIN makes us exhausted... Factors to consider are any type of physical ( accidents or surgery) or mental trauma, disorders of the immune system function, stress, anxiety and viral infections. In fact I believe that the immune system plays a huge part in fibromyalgia and try and treat it as such to try and find a balance for myself. The site states about responsibility for healing.. I would suggest that any of us with whatever condition that we all are looking to find ways to "heal" to find a better way of coping in this particular instance with the PAIN and other symptoms... its a myraid of issues, not just one and is invisible to the eye... Yes we look tired.. of course we look tired.. its the strain of trying to go about normal daily activities and having to mentally tell yourself you can do this, move this way.. arghh no move this way... what is that number again, where did I put the milk.. answer its in the fridge.. oh okay.. where is the fridge again!! We can laugh at our own foibles or even cry at them... Fibro unfortunately is now a part of me.. of Us.... we have to learn to live with it, we cant just take a pill or do this exercise or this and live without it... The choice is how we as sufferers deal with it... Responsibility is taken by each individual and again I repeat what works for one may not work or be of any benefit or even aggrevate the condition for the other.
So it is widespread known that "treatments" vary from one to another and may be a collection or a few of the following..
Conventional treatments of fibromyalgia include:
•Painkilling or anti-inflammatory medication
•Other prescribed medication
However, many consider that fibromyalgia is a condition which is best treated with an integrative or complementary approach, using both orthodox and alternative therapies:
Have we tried them all ~ are we capable, can we do them, have they been offered to us... it seems the USA and the UK differentiate in treatments and what is available..and of course what our finances can stretch to or limit us to.. and if we have any allergies, some of you talk of opiate medication and such like.. I am unable to take any form of medication due to allergies... I am medication free... each day is a complete struggle... but im doing it, im doing what i can, when i can and utilising what is conductive to me as I am sure you are all too.
Mmm I know I have gone on and probably now at the rambling stage... too long... tired.. eye strain..finger pain and muscles that just wont let up the burn...etc etc... and thats probably you not just me so thank you for reading....
On an ad note... a point of interest .. read up on Edgar Cayce and his studies... fibromyalgia was around over a 100 years ago.. Edgar Cayce was a reknowned and respected psychic.( whether you believe or not it makes interesting and informative reading) . who allegedly had the ability to give answers to questions on subjects such as healing, wars, and even had visions of the world's end. He channelled information about fibromyalgia as we know it today.. and his information is enlightening.. I understand we cannot post links or diagnose etc etc here.. so if you wish to look up his research centre... it helped me no end.
Another point is... I wonder if and what treatments have been personally tried and your perspective of such, perhaps you would be kind enough to leave a comment below as a discussion in order to see if anything is available, or has worked or not to assist us all.
For now my " kicking fibro in the butt day darlings".. I wish you all better, clearer, brighter, understanding, pain free days... and restful, peaceful nights.
Oh and that reminds me....the next time I am asked what is wrong with me.. my answer is simple..
"I have a fiRbo personality and I kick BUTTS"... how is that for confrontational!