Could the answer be in the similariti... - Fibromyalgia Acti...

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Could the answer be in the similarities of the story we all have!

gdxahd profile image
46 Replies

I have a controversial personal theory about Chronic Pain and Fatigue related illnesses. Please read with an open mind and I hope you will realise that even if you disagree it does have some logic. I have helped people with M.E. to improve their lives and I really want to see if the same applies equally to fibro, as I think it does. I need to set the scene, please bear with me.

Short term pain has a purpose, it is a message that is a call to action and is both urgent and focused. Imagine the reverse, if we did not have pain and broke our arm we would carry on regardless until eventually the bone breaks through the skin and becomes visible, even then we would have no feeling of urgency. Pain is designed to be protective, because if we know what causes us pain we avoid those circumstances and situations.

Long term pain is a message of little value. Where it relates to an injury that has long since mended it has no value at all. Amputees often still have pain in the limb that has been removed and research shows why:

1, pain is a generated response that operates in the neural pathways of the brain not at the problem area.

2, The neural pathway for that specific pain becomes imprinted as a memory that continues with that response.

3, With regular use a neural pathway widens into a neural motorway.

There is a technique, used all over the world, called "N step" that is used to switch off "old" pain. I have used this myself and seen it work on many others, quite simply it turns off the signal as it is no longer needed. It is instant, so this is not a mater of will it - won't it work, you know straight away. It is not a temporary numbing of an area just the removal of an unwarranted message, it still allows any new injury to give you pain, so it is totally safe.

So would this work for Fibro? If it does then it will be life changing! I think the answer to that depends on why you have that pain. Unfortunately we cannot get the answer from the wide ranging symptoms that people with Chronic Fatigue and Chronic Pain have. Is it the pain that causes the problem or the problem that causes pain? We can however look at the commonalities and speculate.

Your body is a fine tuned survival machine and in the main it is very good at fighting off threats and repairing itself. So why would it allow you to have debilitating pain and fatigue that severely restricts your life?

What if that is why? Perhaps the whole purpose is to restrict your life so that you survive!

Bear with me whilst I explain why this is logical.

The story for everyone I have met or consulted is:

When this illness started you were a highly driven person and pushed yourself to the limit, often more than your body could cope with. It started with one or more of the following; a viral infection, severe stress or a traumatic accident/incident (the trigger). Several weeks later when you anticipate you should be feeling better from the initial trigger you now have the illness that gives you the chronic fatigue and pain. This continues for many years, if not for life, whilst you become more and more frustrated by lack of diagnosis, answers or remedies. You may even accumulate more illnesses as your immune system overloads. At some point you will feel so low for so long that your internal voice will keep repeating a phrase that reflects the terrible thought that you are never going to recover. As you rarely look poorly you also have the issue of not only feeling very ill but having to convince others that you are. Their comments are far from helpful and are in total opposition to the driven person you know you are. This adds to the pressure and continues the downward spiral. At times you may be lucky enough to feel a bit better but whilst playing catch up with life you find it is the fatigue and pain that catches up!

So my theory is that you reach a point where the "last straw breaks the camels back". You have run down your resources to breaking point and your immune system is weak and vulnerable. If left to you, you will still push on, so your body has no option but to shut down, in effect forcing you to stop. With other people this could take the form of a heart attack or stroke, severe mental breakdown or lesser hindrances such as ulcers. However those things wouldn't stop you - would they? So your survival system shuts down areas specific to you as an individual and what better to get you to stop in your tracks, severe pain not only restricting movement but also taking away your ability to think about anything else. Combine that with fatigue and other issues like light sensitivity and it gives you an almost coma like state designed to conserve all your energy for recovery.

This is only supposed to be temporary, however it has really underestimated your determination to carry on regardless. Your battle and drive to recover continues to drain resources and becomes a downward spiral of more pain and fatigue and more of a fight back from you. Add to this poor diagnosis, people questioning if you really are ill, having to convince them you are when you really don't want to be, not being able to work, financial problems, etc... All this takes its toll.

With M.E. I have helped people break the cycle by getting them to understand the need to stop driving themselves so hard and once they accept that, then getting their body to release them into their own care!

I do think Fibro is the opposite end of the Pain/Fatigue spectrum. If I'm right the same process should allow that release from Fibro.

So what do you think?

Before commenting you need to know some things about me. It have made no financial gain from over 18 months of studying this and helping people. I do have a great interest in people and life improvement. I Chose ME and Fibro because I can help the most people with the greatest amount of life change and I do realise these will be people with low financial means, so I wanted to find a treatment that would be quick, cheap and effective. I personally had experience of severe fatigue. And last but not least - I do know it is NOT in your mind - You had no control over what happened to you, in fact getting Fibro possibly saved your life, but only to imprison you.

Thank you for taking the time to read this, I would love your feedback.

A special thank you to those who responded to my question "Is this Your Story". Your stories touched and inspired me.

I may of course be totally wrong - for your sake I hope not!

Steven

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gdxahd profile image
gdxahd
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46 Replies
Extremelygrumpy profile image
Extremelygrumpy

Interesting .... I stopped driving myself so hard 12 years ago gave up work moved to cheaper house no worries with bills etc but I have a son who is autistic the only way I could solve that part of my life would be to put him in care which is absolutely not an option,so while I agree with the principal of not driving yourself so hard and taking back control of your life.....life isn't that cut and dried black or white so no matter how I try to be more laid back and not so driven for myself ... I have to do it for my son..

VGx

I found that interesting and i do agree to an extent, i do believe in the power of your mind an all but i would love to get better. My life is stress free, well nearly and i'm lucky enough to get lots of rest. what i don't get is if this really has worked why has it not had a bigger impact have you spoken to professionals about it?

I do make myself do something everyday other wise i would go mad.

I am comforted to know that their is someone like yourself out their trying to help, so thank you xx

gdxahd profile image
gdxahd in reply to

Thanks Rachie, I've not tried it yet with Fibro, hence nothing to tell the professionals. Quite frankly professionals tend to get stuck in the detail and in specific symptoms using language I couldn't join in with. It's because I look at the overall concept and at what caused it that lead me to this conclusion (all my work is looking for root causes). If anyone can put me in contact with suitable professionals i'm more than happy to share my thoughts. Thanks, Steven

Akasha72 profile image
Akasha72

I'm also thinking ...interesting ...

It certainly strikes a cord with me. I was that work hard, party hard, sleep when I'm dead, person before the fibro hit but at the same time I now take life quite easy. I stopped working altogether, I don't have the energy nor the strength to party ... and as for sleep when I'm dead? hmm, I wish I could sleep like the dead I know that much lol

I do, however have a level of acceptance of my illness. I gave up trying to convince people I really am ill a long time ago - I havn't got the energy for their issues - I have enough of my own!

It's a good theory but in practice I don't see how it works.

I'll be interested to read further responses anyway :)

gdxahd profile image
gdxahd in reply to Akasha72

Thanks Akasha, I will be posting the practical stuff once I have the feedback please bear with me, I'm treading carefully here! Best wishes, Steven

Very interesting theory indeed Steven!

I must draw your attention to your comment - "I Chose ME and Fibro because I can help the most people with the greatest amount of life change and I do realise these will be people with low financial means, so I wanted to find a treatment that would be quick, cheap and effective."

We have not yet heard exactly what treatment you suggest, however we must at this stage draw your attention to our Guidelines -

fibroaction.healthunlocked....

If you are going to offer treatment for our members and asking them to pay for this, this unfortunately is not in accordance with our Guidelines. Also we must point out that when posting health or medical information outside of your immediate personal experience, show a clear distinction between personal experience or opinion and evidence-based information and be careful to not present information outside of your immediate personal experience as fact unless you can back it up with reputable evidence based information sources.

I apologise if we are pre-empting your treatment ideas, but we have to err on the safe side, I am sure you appreciate this in the interests of our members.

On a positive note, your posts have been fascinating and very thought provoking too, so thank you. :)

gdxahd profile image
gdxahd in reply to

My intention is to see if people think this will work for them (if it strikes a chord) and then provide help and tips free on this site. Thank you for the care in pointing out the parameters and your kind comments. Steven

in reply to gdxahd

Hi there Steven, thanks for your understanding. Providing you are aware of our Guidelines and post in accordance with these, that's absolutely fine.

What you are posting is incredibly interesting and I can personally relate to it, I genuinely thank you for this.

Admin hat off now - Many of us are Mums here, always putting ourselves at the bottom of the list, putting partners and children first and not even considering ourselves. It seems ironic payback for all the years we spend raising our children, putting everything we've got in, and ending up with Fibro at an early age.

I raised my three children in times of hardship (violent marriage, ex's trial and conviction etc., being a single parent then thankfully finding happiness and re-marrying.) I've been happily remarried for ten years and most of those years I've had Fibro just when everything was right in my life, life has a funny way of making things tough doesn't it.

tulips123 profile image
tulips123 in reply to

re. your last paragraph and in relation to Steven's ideas, some of which incidentally I have heard similarly before. Fight or Flight mechanism when forced to stand and fight for longer than the body would normally cope with, which sounds like happened in your case because your children needed you to stay strong to get them through to safety and now you and they are in a safer environment, now your body gets the chance to relax it's letting you know - really not happy with that level of stress over that length of time! I'm sure this is an over simplification, life is so much more complex. I am fascinated with this (perhaps obsessively so), but I dont at the moment have the brain power my hands hurt too much, i have too much to deal with. I'm certainly driven, but for a suuposedly strong, intelligent, middle aged woman i'm unable to cope with even 'normal' stress and I have an amazing ability to keep making the same very stupid mistakes!

i will continue reading this as well as usual daily blogs. even if i cant post it helps to read other peoples because i can relate to them!

gdxahd profile image
gdxahd in reply to

I'm hoping it doesn't have to stay that way! I'm sure were heading to good stuff here. Thanks, Steven

gdxahd profile image
gdxahd

Hi VG, thank for the response. Yes you are spot on, there are many things we cannot just drop. The point I am trying to make is that there are many things we do that we talk ourselves into that could either be done by others or not done to the high standard we set ourselves. If we can't change our circumstances all we can do is change how it impacts on us. sometimes we have to not work to our own rules, because they are too strict. You have reminded me of another one of my findings - Caring for others, even to the detriment of self. What an awesome bunch of characters you are, you certainly deserve a good quality of life that you are not currently getting. All the best, Steven

tulips123 profile image
tulips123 in reply to gdxahd

hi steven - can i refer you to my reply to libertyz? i agree re. caring. i am by nature a carer, not caree. i hate this!

I wish you well with this. fascinating.

Ok. Sounds good, but I don't fit into some of these

Things stress well mum died but that happens in

Life and I believe that I had fibro before this event

Just thought the aches and pains were the fact I

Worked on a very heavy ward.

I have a very happy marred, no money problems

And very little stress.

The only thing I will admit to is I have always been

Very driven in my job working in a hospital does tend

To do that.

My fibro was given its name within a few weeks of

Seeing a GP, I am very aware that no medication

Will take the pain away. I do not have depression

I do at times cry when the pain takes over my life

But that's not depression, or if it is, it is only for

A short time

So where do I fit into this.

Viv

gdxahd profile image
gdxahd in reply to

Thanks for the question, whilst pondering it It has helped me quantify the question I was posing. I think the root cause (overdoing things) has to be resolved before dealing with the pain. That way it would become "old" unnecessary pain and suitable for "N step" to work. i really don't want to take that next step of explaining "N step" if it won't be helpful without the root cause being sorted. let's see what else crops up in these really helpful responses. All the best, steven

WEEme profile image
WEEme

Found your topic and theroy a very interesting read, I can relate to the high driven way of life always pushing myself too much for others and putting self on back burner. I look forward to reading some of your next blogs, thanks for your share Steven

gdxahd profile image
gdxahd in reply to WEEme

Thanks WEEme, working on it now! All the best, Steven

jom277 profile image
jom277

I was 15 years old when my neck first went into spasm following waltzer's at the mop fair. After this, my neck went every few years on stupid reasons, like turning head quickly. Yes I worked hard and partied hard too. We even had blue label vodka in the filing cabinet.

When I found out I was having my daughter I did stop party, driven lifestyle. I had rough pregnancy and birth. I now know this is due to tilted pelvis.

I changed to a totally different job, with no stress and yet I still had issues with neck and then travelled down to my mid back and hip. Again very rarely.

When my daughter started school, I went to uni to retrain and I became a adult social worker.Whilst training I was diagnosed with chronic myofascial pain, given treatment etc. Again pain was sporadic. Final year was stressful and my father died just before I started final year. Yes I suppose I was very driven. I started working full time in a veryenvironment.

It was during my 2nd year of qualification that I was diagnosed with short leg syndrome. I believe this was my trigger. I was given modified shoes and my body went into crisis. I was told by gp, consultant to bear with it and after a year admitting defeat and I weaned myself off this stupid shoes. I believe at 37 I was far old for my body to change. I now walk totally different to how I used to, am flat footed, which I wasn't before hand.

After couple of more years, can only work 22 hours and I have a lie down everyday. Then got diagnosed with Fibro as well as CMP. My sacro illiac joint has degenerated due to the treatment.

Since working 22 hours, I have only had a couple of days off sick. I am now however off sick due to side effects from newly prescribed medication. Hopefully will be back to planet earth shortly, so that I can work. I have help in my home and help for my daughter who is now 11, to access activities that I am unable to do with her.

Well that's my story and I do believe it was due to shoe issues that I have fibro.

gdxahd profile image
gdxahd in reply to jom277

Thanks for sharing Jom. Fibro does seem to enter peoples lives at that "too much to bear" point. It is heart breaking that such strong, determined and lovely people have such debilitations. I'm learning all the time from these stories and only a few minutes ago incorporated some of this into a session with someone. Although she came with M.E. I spotted today she was well towards the fibro end of the spectrum, the brain fog was obvious and I did have to tailor my work into smaller chunks, so that they could be absorbed by her. Thank you so much for the shared experience and the valuable learning from it. I think my best strategy will be to supply a series of small strategies you can all use, Best wishes, Steven

What an interesting theory, and I completely agree, I have taken on too much. Done to much and had to much thrown at me to cope with. No wonder I'm like this now. The mind is an amazing thing, I know from when my mum got diagnosed with terminal cancer I ended up in hospital on many occsions with " ? Apendix "and constant funny tummy, after a few months it turned out to be IBS, generalized anxiety disorder at 12, It causes muscle twitches aswell as the usual symptoms, tension headaches from being 16, I.could go on with all the symptoms I get from situations, breakdowns and mental health disorders, but as examples I can understand how the brain can cause physical symptoms. But didn't think of it as my m.e and fibro being a way of protection, it makes sense! Will keep an eye out for other posts by you, aswell as reading others, this website has helped me so much

Zara

gdxahd profile image
gdxahd in reply to

I'm a big fan of Louise Hay author of Heal Your Body. She describes how "trapped" emotions cause physical problems, she even fine tunes it into an A-Z version of her book. When I first heard about it I was somewhat sceptical, however this book now takes pride of place on my coffee table. When clients visit I listen very carefully to their story and ask about and physical problems the currently have. I match the two together and then look it up in the book and it is spot on every time! Personally I think IBS after it has been medically assessed and they can find nothing, is one of the simpler things to help. Louise's lists the "probable cause" as "fear of letting go of the old and no longer needed" See if this strikes a chord with you over the next few days! Kindest regards, Steven

tamysha profile image
tamysha

I am definitely one of those people who push themselves too hard! I won't let anything stop me, not even Fibro (although I only got a Fibromyalgia Spectrum diagnosis, they wouldn't go any further). As I'm not letting FM stop me, I now keep getting various viruses that are stopping me! I had a chest infection first 2 weeks of September, now I've got something similar again. These are the only things to stop me working. I can't take time off with FM because 'it doesn't show' and I don't think they believe I'm ill - I work in a doctor's surgery!! - the practice manager admitted straight out that he doesn't understand FM. Someone at work the other day got bitten by a cat and everyone couldn't do enough for them! I struggle every day (even when I'm fairly well) I feel as though I'm dying by 11am in the morning, but still keep going until 5pm! So am I getting these viruses as my bodies way of trying another way to stop me? Trouble is, not having 100% diagnosis of FM, I feel as though I'm in some sort of libo! Have I really got ME and not FM, is it something more serious, but not yet diagnosed? All this is causing more stress and worry, which is the last thing I need.

gdxahd profile image
gdxahd in reply to tamysha

Thanks, you have raised here something I only realised about myself in the last week! When i was 13 i was learning to swim, ventured out of my depth and started to drown, I then spent several minutes thrashing about getting back to the beach. I never shouted for help nor did I make a fuss when puking up sea water, nor did I tell anyone what happened - until now! I live my life like that caring for others and not letting others in to care for me. I then wonder why no one seems to fuss around me! I think you, like most people with Fibro, are caring for everyone except yourself. And in doing so we train others to appear that way towards us - we become invisible. As you say Fibro doesn't stop you, this is why viruses are joining in! I will post something shortly about dealing with what you need to and yet reducing the effort. In my personal opinion you need to conserve and reserve some energy to build up wellness, until you do you will always be on that knife edge of full shut down. Self preservation first or you won't be able to help others! I wish you well, Steven

electricjaws profile image
electricjaws

hi steven,interesting read,the wierd thing with me was yes i did live life to the full and worked hard,being born hyperactive as long as i had four hours sleep a night i was revved up and ready for anything from the minute i opened my eyes, i have had a tough childhood and at times a very hard life,but i never went on about it and was pretty happy go lucky despite it all,i was at one of the happiest times of my life ,when i had dental trauma, a extraction that was badly done,i crashed back into the dental chair and ended up with a whiplash type injury and a jaw prob(tmd), one thing led to another and 13 years on i am pretty much a mess healthwise,and have several things on top of fibro, i hate the fact i am as i am now and feel like the old me" is who i want to be so in a way i feel like i am grieving for the old me as she is tecnically "dead" i s'pose, there is a technique called the reverse therapy approach which is meant to be a bodymind approach(by john eaton) which similarly has a few theories like yours,the specialist i was seeing at a pain clinic,said basically he feels with fibro that the brain still keeps sending the messages to my nerves that i am in pain and so my brain is theoretically holding my whole muscle skeletal and nervous system hostage as it is like a computer with dodgy software!!! that made perfect sense to me

gdxahd profile image
gdxahd in reply to electricjaws

Thanks, for this great information. Yes that ties in nicely, Its almost a full bucket theory. We have this bucket nearly full all the time and so now and again the one more thing, however trivial, causes it to fill up to the point we can no longer carry it. Some one else could easily pick it up and wonder why we are having problems, but they haven't been worn out carrying this nearly full bucket for years! An excellent share, thanks, Steven

I think this emphasises the pain message theory that this is not "old" pain we can switch off as you still need the message. So my mission is to help you no longer need the message! Only then can I show you the switch.

deelightful profile image
deelightful

Thanks for this most interesting item. What is the process of 'switching off' the pain.?

I like most of all those already commented have had ME, FMS, chronic lower back pain and other health issues for many years. I would love to hear of your findings. I agree the bodies pain is there for a reason, so to be in constant pain is worrying. The more I learn about this illness, the more I am surprised at my findings.

I have been unable to work now for 12 years and find I am no longer the person I once was. I work hard and as you say pushed so hard that I the body just shut down.

We sold up everything in the UK to make our life simple, we moved to Spain instead of enjoying a new life, it was a nightmare. After the first 3 months of being out there, my dad was diagnosed with terminal cancer. I was flying bad and forth to the UK helping the family, when he died 6 months later It was recommended to me to have a course of reflexology. To help relax me and maybe help my pain level, After the first session I felt so ill, like a fast acting flu. My whole body went into therapeutic shock, I was bed ridden for 3 weeks, my hubby had to help he sit up, he had to carry me to the loo. It felt like the worse case of flu I had ever experienced. It scared me to death. The reflexologist was worried, she kept an eye one me for a few weeks, she had never seem it in her patients, but had know others who this had happen to, it was rare. It was as though the body wanted to fix itself, but there were too many things to do, it did not know what to fix first, so it shut down. I very slowly got better to the point that I could get out of bed myself and was mobile. We were only there for 2 1/2 years as I could not work, and my husband was looking after me, it was better to be here in the UK. All I wanted was the pain to go away.

The spainish doctors could not find anything, I had MRI and CAT scans, they did not believe me, all the specialists were concerned with was the fact I could not speak Spanish. I just want to get on the next plain home. It was only the Pain clinic here in the UK who suggested this and I finally was diagnosed this October this year.

If you can find a way to help us Fibro sufferer, you will be our "Knight in Shinning Armour". I await to see more information from you.

Many thanks.

gdxahd profile image
gdxahd in reply to deelightful

I will do what I can. The process is 1, changing your perceptions about yourself and of what is expected of you by others and YOU. and when this is imbedded in your self belief, 2, asking your body to release you from the pain, the fatigue and any other symptoms. Whilst this may sound too simplistic, it has worked for 7 out of 7 people I have helped with M.E. However they have been one to one sessions where I can work on their feedback including verbal and non-verbal and take over an hour with them, plus a follow up. My mission here is to try and write it in suitable bite size chunks and respond to your questions. I will do my best, please bear with me as it will be time consuming, I will possibly have time to produce a chunk a week. It would help greatly if I could post videos or audios, is that a possibility (Admin)?

All the best, Steven

deelightful profile image
deelightful in reply to gdxahd

So good of you replying, perhaps you could record a video format file and post it to wither those of us who are interested or post it on a blog. Another avenue maybe youtube, that is if you don't mind it going global.

Sometime the simplest things are the ones that work. If I can get some of my life back I would be happy. I shall continue to read your updates.

your friend

deelightful

gdxahd profile image
gdxahd in reply to deelightful

Many thanks. Perhaps Admin can point me in the right direction as to how I can post videos or link to them here. Although typing here has helped me greatly in clarifying my thoughts it is time consuming and not the simplest way of explaining my practical tips. Regards, Steven

I have looked at this sort or re programming before through Gupter. The issue I have with it is that it ignores the very real toxic events that are going on alongside old pain related behaviour. I was diagnosed in 2010 with fibro following a car accident but before that had the CFS diagnosis in 1999 during a highly stressful time of life...and before that IBS was diagnosed following a campylobactor infection.....and before that depression following glandular fever. (i've never been depresssed. That's how GP's saw post viral fatigue). Before that i had other gut and migraine related issues.

I don't know your program at all, but the pain for me is not left over from my past (like amputees) it's a daily effect from toxins which allow the build of lactic acid in my muscles and a blocking of mitochondrial function. It's about a dysfunctional gut that is allowing all this to continue. The gut / brain connection is a strong one that is mot yet filly understood.

We're all different. Our triggers are different.

I do think meditation etc and positive thinking helps with the toxic effect from stress....and fear of returning to painful times, but its only half the story. Gupter type programs and NLP from what i've seen so far, throw the burden of guilt back onto the patient. (if symptoms return it's because you're not working the program ). For me guilt is not my friend and adds to the toxic mix.

Sorry to sound negative. Lol

Just speaking from my own experience x

Good luck with your venture.

Stepper x

gdxahd profile image
gdxahd in reply to

Thanks Stepper, I agree totally with you. This is a theory of how we get there. Hopefully it could point to how we get out of it. Unfortunately there are all the additional problem that people with Fibro acquire. I've not really explained it well about old pain (i'm better at talking than typing). My thoughts are that if the body no longer sees the threat it no longer needs the protection. I also think that many of the related illnesses would not have taken their toll if you were at full strength and your immune system intact. So i know I don't fully have the answer, I do hope I have enough to improve lives. Its a worthwhile experiment. Certainly I have no wish for anyone to feel self guilt, you don't need that, In fact my first few bite size chunks will be about avoiding that. these are physical ailments beyond your control. There are many factors involved in well being and this is just one aspect that I feel has great significance and does seem to explain the illnesses. Many thanks for your contribution and for allowing me to re examine and clarify, Kind regards Steven

deelightful profile image
deelightful in reply to

I had not heard of Brain retraining, just looked up Dr Gupta he has a nice little earner at £95.00 a pop. But, does it really work?

gdxahd profile image
gdxahd in reply to

Hi stepper, I would like to study the work of Gupter (google was no help) could you direct me to where i can find out more, Many thanks, Steven

in reply to gdxahd

cfsrecovery.com/

actionforme.org.uk/get-info...

guptaprogramme.com/html/exp...

The free videos are very informative.

There are others.....

limbicretraining.com/

actionforme.org.uk/get-info...

reverse-therapy.com/

mickeltherapy.com/what-is-m...

Theres a lot of people making a lot of money out of vulnerable people. I'm not saying thats what you're trying to do...... but this rebooting of the flight or flight systems..... or using EFT to re-learn how to not be ill.....are theories that have been around a long time.

sorry if I'm skeptical but I've been searching for lots of years. There IS NO CURE (yet). This is a toxic situation that can be self managed through pacing, diet and gentle exercise.... There is a lot we CAN do to improve out situations......but theres also a lot of red herring roads to navigate around

Stepper x

in reply to

All these links are on google x

tamysha profile image
tamysha

There seem to be a lot of people with FM/CFS who also have under active thyroid conditions. I don't know the percentage, but it would be interesting to find out. Do you think FM/CFS could be linked to another condition or is it just a coincidence?

gdxahd profile image
gdxahd in reply to tamysha

My thoughts are that at the "trigger" point onward your immune system and resistance are so low that it cannot deal with things that you would have otherwise fought off. Its a very good point, There are other regularly mentioned issues such as heavy metal poisoning. With lots of issues it is difficult to say if it was a cause or an effect. All the best, Steven

tamysha profile image
tamysha in reply to gdxahd

That's interesting, because now I'm not sure whether I had FM before or after the under active thyroid was diagnosed! I wasn't diagnosed with FM until several years after, but that doesn't mean I didn't have it and some of the symptoms are very similar anyway. Do you know why it is mainly women who are affected by these conditions? Also is this a 'modern day' condition or did people suffer from this years ago? Just wondered whether it was something in our environment or diet? Are people all over the world affected or is it just in certain countries? Sorry for so many questions!!!!

gdxahd profile image
gdxahd in reply to tamysha

These are just my personal thoughts from study and practice. I would say women are more likely to get this because of the very nature and way of being that dominates all the same story, that of working over hard and of putting the care of others before one's own interest. These discussions are really helping me fine tune my thoughts and findings, thank you so much for your interest and this opportunity, Steven

in reply to tamysha

The thyroid CAN be borderline low, but this can be down to a blocking of the pathways rather than the organ malfunctioning.

Please be careful.

I ended up really ill messing around with thyroid function. the problem is....if the problem is down to toxic responses it is intermittant.....so if you take medication you could easily mae the thyroid over active... (which I did) and bring on some very nasty and exhausting symptoms....

Under active thyroid SHOULD be one of the blood tests done during the diagnosing process. If the thyroid is shown to be dysfunctional it would be treated at that point....or should be.

For me it was one of the first things they looked for.....

But much internet info is around to encourage people to fight for medicating a borderline issue.

Please be careful.

I understand the desperation of trying lots of things in an attempt to get better. I've been there.....

BUT when your body is not functioning properly because of ME or Fibro,,,,, its also very easy to make things very much worse x

Working at finding out what your own personal toxic triggers are is a long proces but very much worthwhile x

Stepper

realsorelady profile image
realsorelady

I like this topic, read a few and if this is a mind over matter thing welI I have plenty of experience of that. Had IBS since teens, had alot of mental stress in childhood to adult years and had abit of a complex about myself even though none of the problems were down to me. I lost my virginity at 18 to rape, someone I thought I knew, blamed myself. Did nothing but carry around the shame. After my 2nd daughter I got a womb prolapse, neglect at birth really, but was told it was my imagination by a nurse, until a few years later I couldnt cope anymore and doctor looked at me down there and told me to cough and agreed I needed surgery. I managed for 8 long years with the pain and discomfort of my conditions and I believe it was mind of matter and pain killers that got me through an abusive marriage and raising 3 children alone, and still dragging my body around after a hysterectomy. I could go toilet after this and blamed IBS but the adhesions were so bad my stomach and bowel were stuck together, a further operation sorted this and I felt fantastic for two lovely years. Although I had waterworks trouble and occasional IBS I was well and happy. But now, in the last 4 years my back, neck, joints ache so much that I dont seem to have any mind over matter left anymore. I lost my wonderful I job I loved and things are not getting any better pain wise depressed wise or financially. So mind of matter type thinking is all good, done it most of my life, but cant manage it anymore. Got told I have Degenerative Disc disease and Fybromyalgia 10 months ago but have had this for years.

gdxahd profile image
gdxahd in reply to realsorelady

Thanks for sharing. Whilst I'm a big fan of mind over matter it really is hard work as you are consciously trying to fight an unconscious processes (and it has thousands of times more resources). I prefer to deal with it by correcting the unconscious programming that is causing the problem. That way you aren't fighting yourself every day! Self hypnosis and positive affirmations does this and whilst i do plan to give a lot of helpful tips, meanwhile there are many sources of information on the internet that might be of use. It is really saddening to hear of people going through so much pain and physical discomfort, I do hope you find a way to at least reduce it. All the best, Steven

realsorelady profile image
realsorelady

couldnt go toilet I mean, and that was sitting on toilet for hours.

lighterlife profile image
lighterlife

Hi Steven.

I think this is quiet a real conditions, so I don,t understand how this work, as I am a very Strong person I had a bad childhood ,with beatings and told i was not wanted .I Served my childhood than ended being in a bad marriage knock about again and cope with that I have all-ways worked hard and been there for every one . Had a back opp ten years ago which went wrong did take a few year to get over, than two years ago i was in so much pain i was told I had FMs/Cf's and ibs and disc pro.

And i still try to keep pos and try ever day telling myself I am not in pain lol

Anyway look forward to your input on this sup x

gdxahd profile image
gdxahd in reply to lighterlife

Hi lighterlife, I think it can be best described in the same terms as an athlete driving themselves to get a gold medal. They drive themselves really hard and push the physical boundaries of their own capabilities. Whilst in that highly trained state if they push just a little to hard at the wrong time they get a major injury that put them out of the running often for a long time. I think you and others with Fibro are on that knife edge of capabilities where it only takes one more thing to tip you over the edge. So yes it is a real, physical condition. My idea is that you remove a lot of the underlying issues and then you have more in reserve to fight off the new stuff. Also a tip for you, when telling yourself you are not in pain, it is advantageous to avoid the use of the word "pain" as that becomes the focus. Try something like "every day I increase my feeling of wellbeing".. Affirmations need to be in the here and now and phrased for what you want, not what you don't want. I hope this helps, best wishes, Steven

beckyglen profile image
beckyglen

This is really interesting - sounds similar to the pain "gate theory" and cognitive behavioural therapy.

I was also a very driven person, always working hard, out partying and used to run about 5 miles a day - was training to be a medic in the royal navy when it all started. 3 things happened one after the other whilst doing my training. First I had an accident a tore 2 ligaments in my knee. Then fell off a rope ladder and hit my head and neck - only whiplash thankfully. Then I got swine flu - this all happened in a 12 month period. I was also under a lot of stress planning my wedding and dealing with the prospect of medical discharge from the Navy.

I also had glandular fever at 16, whooping cough aged 4 and was born at only 4lbs as my mother had uterine cancer whilst pregnant.

I am also a "carer type" which is good as im hopefully going to be a nurse soon! I have cared for my mother from quite a young age as she has been very unwell for a long time now.

I know im supposed to try to pace myself and slow down now but cant seem to do it no matter what my body keeps telling me. I know im making myself worse by trying to do too much but something inside me keeps saying "dont give up just keep trying harder and get on with it".

Don't know if any of this info will be helpful to you Steven but hope it is.

Research is the way forward so thank you for all you are doing

Becky xx

gdxahd profile image
gdxahd in reply to beckyglen

Thanks Becky, as you say your body keep telling you, but you carry on. This seems to me to be quite typical of someone with lots of rules they impose on themselves! The issue is not about doing what you "need" to do do for yourself and others, it's about removal of harmful rules that put too much pressure on you when you don't complete them or complete them as well as you "should" and then it turns into guilty feelings. Should's, musts, & "have to's" are terrible words we use to hurt ourselves. When you start to notice them you can question yourself whether you really do have to follow these programmed rules. For some things try substituting those words for "I'd love to" and then do it in your own time when you feel up to it and can enjoy it!

Thanks for listening Becky, all the best, Steven

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