Thoughts ~To post or not to post? My expression of perspectives as I kick the fibro butt!!!...Okay so I hit the button ;-) With Love x

Thoughts ~To post or not to post? My expression of perspectives as I kick the fibro butt!!!...Okay so I hit the button ;-)  With Love x

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

Quote again...

"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

•Behavioural therapies

•Muscle relaxants

•Physiotherapy

•Exercise

However, many consider that fibromyalgia is a condition which is best treated with an integrative or complementary approach, using both orthodox and alternative therapies:

•Diet

•Acupuncture

•Yoga

•Aromatherapy

•Reflexology

•Homeopathy

•Herbal remedies

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!

xxx

33 Replies

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  • hi lacey def to post thankyou for your post it took some getting thro but i got there, so much info i need a while to register it in my fibrobrain x

  • Irisjoy ~ thank you so much, and so sorry it is longwinded.. im being carried by the fibro breeze... ;-) XXX

  • Very good reading my addled brain read the misspelling of fibro /firbo to furbee and could just imagine us all on Here as those annoying furry talking rubbish animals kicking butt ... Sort of like gremlins but less articulate. But very positive as I try to be and find the fun in things sometimes I am reduced to tears but I pick myself up and try to enjoy every day.

  • Ha ha I am laughing out loud ~ brilliant verygrumpy ( which I am sure you are not).. yes conjured up the gremlin image for me to.. perhaps if we all wore furry suits weo would get more help..Its okay to let the tears fall for they are rainbows for the soul.. so let them out.. Hugs x

    Ps cant you tell ive just seen the reply to this button... ;-)

  • love that "rainbows for the soul" I'm a great believer in healing tears - I find myself silently weeping many times, sometimes in the supermarket! I've not noticed until my t-shirt neck feels wet.

    The image of me in a furry suit is not a good one I do have a onesy [sp?]

    thanks for the chuckle VG and lacey,

    sandra.

  • Hi Sandra,

    Oh yes healing tears although sometimes I think it drains me more...and yet gives relief at the same time.. a mixed bag.... Im the same.. any little thing can strike... mind you Ive been known to cry at X Factor.. go figure.. lol... ahhh a onesy.. no havent succumbed as yet but my neice has one and that makes me laugh as I threaten to buy furry ears to go with it... ;-)

  • Hi Lacey,

    Well done a mammoth blogg covering so many aspects that we are all familiar with and some that I shall hasten off to read up.

    I have tried varying treatments including reflexology - brilliant very helpful but quite expensive.

    aromatherapy relaxing but did not touch the pain

    osteopath - slightly helpful but you get hooked on going an the day after you are ten times worse it is only after 8 days that the benefit comes through

    I have tried chinese medicine for energy and found myself drinking revolting brown twig soup twice a day did not work at all for medicine

    I turned back to heavy dose pain killers

    Best wishes xgins

  • Hi Gins, Ahh sometimes I get into the fibro fog and it comes out a fibro breeze... and I just have to get it out.... Osteopath just let me know acute pain, infact I felt that it made "things" worse so I stopped going, and on top of that just sooo expensive I couldnt justify it... the reflexology it would be the same ( to justify the finance and yet we shouldnt be doing that when it comes to our health)...I had one years ago and loved it.. but have concern that the pain in my feet is so intense that I wouldnt want them touched.. but maybe something to think about. Ahhh aromatherapy oils.. I love.. I will mix my own and add them to pillows, baths, make rubs all in trial and error.. well they are for me.. I find that the scents can have either a relaxing effect or a pick me up... but its down to personal taste and you have to be very careful ie. allergies etc. Chinese medicine I would love to try... Im doing my own sort of diet.. if you can call it that.. its an elimination, trial and error so will see how it goes... but its not easy, but basically getting my body back to a more alkaline state.

    Yes the dreaded or the relief of painkillers.. sometimes I wish that I could take them just for a reprieve but then the reprieve would be permanent. .. so not so good even in this state.

    I wish you well ~ just keep trying... have you had acupuncture as that has been on my list for some time but its not on the nhs.. and again finance comes into play. Funny how we work to live and put our health at risk and then we work to try and fund our health.

    Hugs x

  • Hi Hun

    Yes I have tried acupuncture too it is very invigorating although once again expensive about £35 a session which when you need it every week or twice a week is expensive.

    Keep battling on you sound like a candidate for hot an cold packs they do eleviate the pain. A tens machine would also interrupt the messages to your brain good luck gentle hugs xgins

  • Thank you Gins.... im still debating the acupuncture...and trying to get hold of a tens, as apparently I am unable to have one on the NHS... However after 7 years would you believe I have just been referred to the chronic pain clinic... this came about as my exasperated self went to see a consultant at a private clinic.. who was quite shocked that I had been left like this and so wrote to my GP to tell him what was needed... No hydrotherapy as again this is not on the NHS... and to be honest I havent found anywhere that does it. Hugs back x

  • I've had hydrotherapy as part of my nhs physio.

    regards,

    sandra.

  • Hi lacey777

    I loved your blog - it encapsulates so much of what I would like to say to so many people, especially those who just smile wryly when I tell them being back at work is a struggle - I am feeling very tired. I have even had it said ' is that because you can't be a**sed!' Like you I am a single parent and have a mortgage to pay - so I have a clear motive to keep working - or I will lose the roof over my head. I know that I work every day to kick the butt out of furry balls (sometimes spelt fiBro!!! LOL) Thanks for taking the time and effort to write it all out. Much appreciated xx

  • Susysparkle ~ Dont let anyone dull YOUR Shine... ;-) Lol.. cant be a**sed!!!! I would like some people to just try this condition for just one day.. or even an hour... and then they would at those words... Yes honey its very difficult in our situation, but there are many many more the same so understand and resonate with the motive to work.. but its a hard road to climb to keep the roof from falling! So keep kicking those furry gremlin balls... And thank you .. to all of you for taking the time to read.

    "Where theres a will theres a way" ;-) x

  • I really enjoyed reading your blog,very well written. I'm now going down the nutritional route,am writing a blog about it. I've lost lots of weight,I go to he gym have completed the health prescription programme,I've had counselling,I've been on a coping skills programme,I'm having equine therapy all that is left is the food I eat. I will be totally skintt after all this but hey ho it's got to be worth trying. I'm a single mum,yes I've worked myself into the ground trying to make ends meet,I had my own business. What else are we suppossed to do other than try to keep going? Type A personality indeed lol. Or maybe we need a type A personality to cope with fibro,it's not for the faint hearted. Now I'm putting all my efforts into getting better,it's a job in itself. Keep going everyone!!

  • Hi Teddysmum43 ~ Heads up to you for taking control, wow sounds as if you have been on quite a healing journey.. well I think most of us have.. what do you find works best.. a combination or one particular that has had or made a huge difference... I agree with the keep on moving forwards as yes, the alternative well .. what is that other than dire... Lol no its not for the faint hearted, and healing on any level for any ailment is definately energy zapping...and being as there is a wealth of information not only on the internet but books etc.. its a lot to get through... Although im new here I feel totally in awe of you all... yes I have the dreaded fibro and a myriad of other conditions to contend with, but Im sure not going to let it beat me... as neither it seems are you. Keep it up.. and thank you for reading my post.. Hugs x

  • Hi Lacey,

    I enjoyed reading your blog. It certainly demonstrates the confusion surrounding fibromyalgia, and the sneaking suspicion, harboured by many, that we're really making it all up!

    I really love the mis-spelling 'FIRBO' and intend to use it frequently. People will probably assume that I said 'FURBALL' ... now that will have them puzzled, won't it?

    Luv ... Moffy

  • Lol yes furball, gremlins... even the little furry furbys of so long ago.. do you remember them, a childs toy...I feel that there is always confusion surrounding things that are not totally cut and dried or fall into one particular catagory... the old school medical profession indeed think that... but the new ones, and of course since scientific studies etc have come to the fore, know that fibro is definately real.. remember in the 90's M.E. .. was called the yuppie flu , there was much surrounding that until the diagnosis of M.E. was made as it was found to be very real. Years ago fibro was called different names... its evolved.. it was I think some of the following, including chronic rheumatism, myalgia, muscular rheumatism, fibrositis, myofibrositis, and spinal irritation... and was likened to charcots hysteria..as the medical profession dismissed it as being hypochondria or a mental illness... now theres a thought..lol... anyhow due to fibromyalgia research and advancing in tests etc fibromyalgia sufferers seemed to present no obvious measurable physiological changes... WOW...

    xxx

  • Wow that was quite a post! I absolutely agree with you on how very misinformed and somewhat stupid this "study" is. Just the fact that three was just his opinion on other people's personality makes it clear this is not based on any evidence scientific or not. The whole chicken and egg thing was annoying but at the same time funny that he thinks this is a valid question. On a side note, grim an evolution standpoint the egg was there before the chicken because reptiles were laying eggs before chickens evolved. Take that Bowen! ;-)

    Really enjoyed tor rant it said a lot of the things i want to rant about but don't because it's depressing and other people don't understand or are firm believers in a particular alternative therapy which will cure me if only I really committed myself for several months and believed in it. It really pissess me off when others don't realize how committed I am and how I try as hard as my limits allow to get better and to live as good a life as I can manage.

  • Hi Leebeloola, love that name , has such a happy smiley feel to it.

    Yes misinformed and Im sure that there are some that do or have benefited from it... with all alternative or complimentary therapy like I said what works for one may not work for another... PLUS... how many of us have tried certain things to help ourselves and got a good result only for the next day or the next week, it doesnt or didnt seem to have or give any relief... As I am medication free..( due to severe allergies) although please please sometimes I just say give me a horse pill... *giggle*... to put me out of this misery... and thats what fibro does.. leaves a miserable, sad and painful element to our day to day living ( not to mention sleeping)... Keep your chin up ~ you know that you are committed... sometimes others dont have the same compassion or understanding purely because they are not experiencing it.. and so dont have the empathy... And I totally get about the ranting.. it can be quite depressing however its good to get it out.. to release it all.. the fears, the feelings and just to have a connection ( like here) with understanding people it truly really helps.. so excuse me whilst I just give a "silent" scream... ;-)

    x

  • Hi, well as the Bowen Therapist who said to look at the study (different to research) it's great to get your viewpoint. Are you all of the same opinion? The two people who did the study were talking only about the people who were part of the study, not every fibro sufferer on the planet. By the way, next time someone asks if your symptoms are psychosomatic, tell them yes. Psyche means 'mind,' and soma means 'body'. You have back pain, it makes you miserable.....see, mind and body! My friend has fibro plus a whole host of other medical problems and she totally pushes herself and overdoes it......not just once in a while but whenever she feels good. Time and time again. So she has an 'A' type personality. She knows that it will cause her problems AND she acknowledges that she could pace herself better.....so in the end it's her choice, just as it's yours or indeed anyone else's. Also Bowen is not for everyone. Not everyone will respond to it. But it is an option and I will defend it as a treatment because I KNOW it works for me and mine and my friend swears Bowen gave her back her life. This is from 100% total experience of Bowen.

  • Hi Cat53 ~ Thank you for reading and thank you for your response... Oh dear this is not and was not a disbelief in the Bowen Therapy.. I belief in many alternative therapies.. and for one have had great effect with Reiki which works on the whole. I was not implying that it didnt help anyone at all... like I have said what one treatment does for another can be entirely different for someone else... However the study did imply that "they" meaning those challenged with fibro show or have similar tendancies, and that is certainly not the case ~ Fibro as well as being extremely difficult to diagnose due to the differentiating display of symptoms.. does indeed affect us all in different ways to a lesser or greater degree.. whilst one may have rib pain, another may have more profound back pain,etc. and we are definately not all Type A personality as we can see from this forum... I totally get the "boom and bust"...I experience it every single day... some personalities are just workers for want of a better word.. .. others are those who can relax easier and take time out.. but thats for everyone not just those with fibro.. Gosh I used to be able to run and jump ,swim, go to work all day, go to the gym, look after my home and children.. all in one day and still have energy left over for a party...fibro for me has robbed the me out of me... the energy the pain the whole vibration of it all... Now if I could do all of that now..( I wish) apart from probably falling at the first hurdle, I certainly would be in a horizontal comatose state!... This I feel is certainly not a type of personality in that sense linked to fibro patients, for I have yet to meet a fibro sister ( or brother) that doesnt experience the boom and bust but have yet to meet one that is confrontational,hypersensitive ( other than to their condition) or anything else that actually wasnt the "norm" for their character. There is nothing to defend.. this is just asking what has worked and what hasnt...and my thoughts on this study and unfortunately I did find the study, the content and what and how it was written a little condescending..without any hard facts...

    Such as mostly fibromyalgia patients have been found to have significantly lower than normal levels of muscle energy molecules called ATP, and often present with palpable painful knots under the skin as a result of constantly contracted muscle tissue.

    The medical evidence to prove that fibro exists ( although there is not one specific test to determine) ... is that patients also can present with abnormal levels of a number of biochemical substances, including lowered serotonin levels, growth hormone and cortisol levels, and elevated levels of substance P, (a chemical in the spinal chord that causes the body to experience pain).

    And so it would have been good to read or hear how the Bowen Technique can assist this.

    xxx

  • Hi LacyI have read all the blogs with great interest... About the best alternative help I found was the Alexander Technique, the teacher who guides you through the process will probably go in for meditation a nd eating the right foods too or point you in the direction of a dietician ..alterrnative I am afaid. Accupunture did nthing for me maybe praticioner was not Chinese each to his own really .. Now in my 80s the medics have so much else to pin it on age depression anxiety arthritis IBS also I have sore mouth condition yes it is recocgnised by a few dentists I think the state of my mouth means my digestion is all up the spout most Gps dont think fibro exists! I dont like the way even taking a few antidepressants makes me feel so bad, I think I am on far to many of these to me toxic drugs mainly diazepam 8 mg nirazepam 5 mgs a night and pregablin 50mgs oh my Gp says such a tiny dose ,,,of course diazepam is addiciive you should come off them having prescibed them 6 years agooh well that ismy tuppence worth to add to list.... vio xxx

  • Hi Violetta10... Thank you for your tuppence worth... my that brought back memories of my late nan as that was her favourite saying... :-) .. Very interesting that you found acupuncture of no help.. I am pondering on whether to give it ago but am hesitant.. its funny as we get older the "age" thing comes into it... such as well this can happen because you are on the menopause to actually we can all "forget" things as we get older and mmm well you are now over the age of forty, or fifty etc.. The Alexander technique sounds very interesting as I am a huge fan of meditation and know that it has brought such a relief and acceptance of my condition(s)... I will look it up and research some more to see if it is available in my area. Wow so you have a sore mouth too... this is so annoying, do you find you cant eat certain foods or have a burning sort of sensation, as this is driving me nuts, although I have to say I have a great dentist.. and although not a GP absolutely believes in FMS...

    I have started on probiotics as this was recommended so we will see if that alieviates any issues also capsicum cream which has been prescribed for me.. this is due to another condition but I am hoping that it will aid in the fibro.. we will see.

    For now take care and sleep well. xxx

  • The trouble is that Bowen is an holistic therapy and as practitioners the only way we can run a study re a particular condition is to take in depth notes about how the condition affects people in their day to day lives, do the treatments over the agreed time and then question in detail as to what their lives are like now. To actually run medical tests you have to be a doctor, or at least in that profession. As you have said, everyone reacts differently. However if people report a drop in their pain levels, so that pain meds are reduced significantly, after a treatment, and their sleep pattern is improved, they relax more, can do more, then that is what we can report on. I know it makes for airy fairy reading but, currently, it's the best we can do. Bowen is, in effect, where Chiropracters were (re the medical profession and recognition) 50 years ago. We are doing research, hamstring is published, back pain is ongoing, but it takes time and costs a lot of money.

  • The trouble is that Bowen is an holistic therapy and as practitioners the only way we can run a study re a particular condition is to take in depth notes about how the condition affects people in their day to day lives, do the treatments over the agreed time and then question in detail as to what their lives are like now. To actually run medical tests you have to be a doctor, or at least in that profession. As you have said, everyone reacts differently. However if people report a drop in their pain levels, so that pain meds are reduced significantly, after a treatment, and their sleep pattern is improved, they relax more, can do more, then that is what we can report on. I know it makes for airy fairy reading but, currently, it's the best we can do. Bowen is, in effect, where Chiropracters were (re the medical profession and recognition) 50 years ago. We are doing research, hamstring is published, back pain is ongoing, but it takes time and costs a lot of money.

  • Hi Cat53 ~ Yes I understand holistic therapies and the limitations, however the study did not require any medical tests per se, it is the content and knowledge or lack of that had been written ~ therefore the research which I feel should have gone into the fibromyalgia condition prior to the study was not complete or thorough, not all fibro patients present the same. . Like any holistic therapy, this works on the "known" facts of any condition and the full facts/issues were or did not seem to be present or taken into consideration. We are all on a healing journey, and it is our own choice whether or not to "try" something and I am sure it has worked for some patients as can reiki or theta healing or massage etc etc...and not for others ~ Like I said it is the worded content and the portrayed information and/or observations of which is actually in my opinion complete or correct and well condescending. . We are all unique individuals who just happen to have the "fibro" label... and as we all know labels are just that. I appreciate your response and agree yes many things are backwards at going forwards as in chiropractioners, but this is the same for aromatherapist, homepathy, crystals, energy healing etc etc... Over time I am sure the world will catch up.

    For now sending love and healing hugs x

  • Hi I have read this blog and all of the comments it has taken quite a while and I am exhausted,having rested for a while I came back here to say thankyou for the Blog . It was very informative and must have taken a lot of strength for you to get it all tog;

    I have fibro, CVFS,RA and am in need of two knee replacements> Before my health got really bad I had a Healing Centre and two crystal shops. After a nasty fall when I broke both my knee caps I had to give it all up. I was very surprized when a lot of my clients from the centre said "well why cant you get " healing " for it. " My Venture was called 'Crystals In Mind ' and the reason for that was that some crystals are known to help some illnesses. But are not a cure for broken bones or RA .some things need medical intervention.

    I have had Keinesiology (not sure of the spelling ) and this was good for me,as he helped me to deal with Leaky Gut Syndrome ,that he led me to understand did not help with my energy !! I The muscle test showed I was alergic to Plastic as in water bottles and I now have a stone and crome water filter and it helps a bit. >>>>>>>>>> I also used to go to a Chiropractor and she did gentle massage on me,freeing off my locked muscles ,but it only lasted afew days at a time and got really expensive. I have however thought about trying Acupressure but not tried it yet.

    My best thing that ever helped me was Hydrotherapy. I could not swim at first because my muscles were too weak and gradually I learnt to swim and was doing very well ,untill this last 8 months as I have had an acute flare the Dr said due to exsessive stress.

    I don't know if any of this is help to anyone :-) but I would hope so.

    Gentle Hugs to you all .....and hope things soon improve for everyone XXxx

  • Hi Rainbowdancer ~I am sorry that you have suffered so much, my heart goes out to you.. wow a crystal shop ...wonderful... a lady from my own mind.. I adore crystals and find the energy emitted from them fabulous and have them dotted around my home and some. I even put them in the bath! Ahhh yes the leaky gut syndrome that is definately something that fibro patients should look at.. and it makes sense, about the Edgar Cayce and his findings that all those years ago he recommended a form of colonic irrigation ~ I have yet to go down that road but am gently "cleansing"..:-) . I use a carbon filter in my water bottles and am about to undergo the removal of the mercury fillings I have.. although this in its self can sometimes create a higher dose of mercury being released ( as per dentist). so wonder whether this is the correct thing. I do like to look at the holistic therapies and am very open to find the right balance... Reiki being one and I find that is a wonderful energy,but not for everyone. I absolutely prefer that to medical intervention however I am limited drug wise due to allergies. TAI CHI is on medical practioners list as very helpful and recognised for fibro patients, however due to balance I am unable to do that... so that is another source of info perhaps others could try by asking their GP. Apparently the NHS have a list what is "working" so to speak and what they can offer. Hydrotherapy or acupuncture for me is not on the NHS as I am so told by my GP....

    Everything each of us said will help in some form or another ~ even if it is to raise awareness, or to try something or inspire our knowledge and to try something new.

    Thank you so much for taking the time to read and reply.

    Love x

  • Hi Lacey I have actually gone down the Colonic irigation road .My daughter and I both went and it never suited either of us,I had a bad reaction to it the same day and my daughter two days after. ( So not doing that again ) :-)

    I also wanted to do TAI CHI but my balance problems stop me doing it!! I am also a Reiki Master and Magnified Master....but as they all say "who heals the healer " I do however use my numerous crystals...and they help at times. I do think I would be much worse without them!! Happy to know you use them too x

    My Dr never offers any Holistic thereapy's and when I see him he Poo Poo's them .so I don't mention them any more.

    Thank you so much for talking to me on here it really does help. Before I joined this forum I had no one to speak to about any of this as my family thought it was all in my head years ago and just walked away!! :-(

    Love Light and Gentle hugs

    Rainbowdancer x x

  • Hi Rainbowdancer... That is a shame about your GP.. why do they just dismiss it... Medical intervention isnt always right.. well in my instance anyhow. Ahh Reiki.. well me too..;-) What is a magnified master Ive never heard of that before? Hope you dont mind me asking here. Plus interesting what you said as my family dont want to know either and whilst very very hurtful I think I am better off.. less stress.

    You are right about what you said.. however there is a saying "Healers heal thyself" and I truly believe that sometimes we go through things however difficult to recognise who we are and to be able to have empathy and assist others...yes its a hard road, but we also find out much about ourselves also.

    Mmm so colonic is out of the window I think, its funny but I find that if something doesnt feel right then I dont go down that route and its helped here in the forum listening to what others have found good or not.. its my first time on a forum too... I have felt considerably lost in this fibro pain and fog and actually embarrassed that I have it... I wonder if anyone else has felt the same way.

    For now sleep well, maybe you are dancing in your dreams.

    X ;-)

  • I've had hydrotherapy as part of my nhs physio.

    regards,

    sandra.

    [I've posted this above but thought it might be lost in the mix.]

  • Hi Sandra ~ sorry if i missed it before ~ how did you find the treatment, did it help any at all ~ Ive actually had a very very bad day today but hey tomorrow is a new one.. right.. ;-) I think it is a lottery draw for areas for what is offered on the NHS... Perhaps we should all climb into a bag and shake ourselves up... ;-)

    Take care x

  • hi lacey, I found it helped a lot, but I got so tired. They now do follow up group therapy at a local baths. I couldn't go at the time as I hadn't anyone to help me dry and dress.

    regards,

    sandra.

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