DO YOU KNOW ANYONE WHO HAS RECOVERED FROM FIBRO/CFS/ME? AM DESPERATE

[WishToBeWell]

Long term MNr but nc. Even here I act as if I am 'well' iykwim as it feels like last place left for me to do that, andI know sometimes I help people which then helps me as makes me feel less uselesss. I am exhausted 24/7 but exhausted doesnt even begin to explain it. Is bone dead. From wakeing I wake up am in intense deep pain in bones joints muscles, just everywhere.

Has got way worse recent weeks without me noticing deteriration IYKWIM and only realised how bad yesterday when hungry but could not move to make food. I didn't even thought it could get no worse

I cant even wash my own hair or prepare food. In a very rational way, if I didn't have DC who I know it would crucify, I would exercise right to self-determination as truly this is is a living hell but that is not and never will be an option for me given would desstroy them and deep down I do sorta hope it will all just go and be better. But alternative of being like this forever just terrifies me as it is no life. Even nice things aren't nice given the amount of effort they take and the pain involved. I mask everything as best can but is very obvious to those who see me that am ill anyway since hardly move and that too eats me up with guilt, that DC see me so weak and useless. DC1 when hugging me gently pointed out I need a shower. I could have broken down on the spot.

No, do not have support, no, GP just uselss, yes, had every test under sun for things like thyroid adrenal but all 'normal' so now have diagnoses been dreading of Fibromyalgia and Chronic Fatigue. Yes have partner but don't live together and he is currently away having addiction treatment anyway (was ill before we met so not his issues have made me ill iykwim).

Do you know anyone who has ever recovered from these as I am desperate looking for help and hope but can't see any. Only thing have read success stories of is Mickel therapy but also see lots of people saying its a scam.

Any advice or storie of recovery would help me more than you could know . Thank you for reading

I did Building, it arrived yesterday (had you sent it earlier?) I'm so sorry I haven't replied yet but I have been lucky enough to have had quite a few, all really kind and helpful (just like yours ) PMs so am working my way through them reply wise.

Don't want to go into too much detail on here other than to say I think some kind of therapy as I move forward is vital, if for nothing else then 'just' for starting to process the (immense and some very painful) stressors that seem to have just been back to back for the past decade. CANNOT get my round the fact that I really have lived in/under chronic stress for some 10 years now - in that context it seems little wonder that my body packed up or got 'stuck' on some hyper adrenaline setting

I will try to reply tomm Building and apols I haven't yet. I am getting increasingly excited about next week, and even just that excitement feels quite novel and different to anything I've felt in recent memory. Also had a sharp reminder of me at work earlier and for the first time in a very long time, it wasn't remembered with pain but with a faint flicker of excitement that I will - and I do believe I will - be doing it again at some point in mid future (my work has a very long development cycle, so not the kind of job you can just step back into even if became 100% overnight).

Have just realised I was wrong yesterday - my once sharp as a pin brain genuinely could not accurately count the days between now and next Tues FFS. Sooo..... now is the time I write...

Four more sleeps

Sending thanks and spoons to all, Wish

Three more sleeps

Banging migraine today so zero rest or food but mega high painkillers and anti-emetics

HappyHello's words are just constantly revolving in my head So grateful to you for your time and would love to chat again before Tues if you get the chance; massively massively helpful x

Two more sleeps

I just wanted to wish you good luck

Fingers crossed for you. I hope you will find this week helpful.

Good luck for Wednesday wish
Please feedback how you get on if you can.

Tuesday not Wednesday

Thank you SO much Hey & ChCh for remembering and thinking of me and sending good wishes

One thing that is already remarkable is how much my utter belief and thus attitude (not my physicality, but my mindset) has already changed quite a lot of stuff. Have been back on twitter for first time in ages and talking about WHEN I'll be working again, and WHAT I have planned. And already in turn some quite astounding things have happened, but they would be too outing so can't put them on here. Suffice it to say that I am beginning to believe that (badly paraphrased here ) quote of what your mind says to you will deliver that to you. Thus far, clearly that's in the context of believing I WILL be well, but even without physical changes yet it really has been staggering in terms of change and responses to those changes.

Am waffling so must go now, should be in bed but body has it's own routine ATM including nap that lasts til about 9pm, hence awake and hoping to eat shortly.

Thank you again x

One more sleep

Thinking of you today!

Ah, thank you Fanjo & Building

It's been a chuffing good day

Return trip of 2hours + 6 hours of taxing and wholly engaged brain work, along with some physicality. And I did it all!

I did go to bed once home to nap for a cpl of hours, but kept pushing that back another hour every time until I felt rested enough to rise and crack on with my homework (ditto vis engaged brain as well as some physicality!) And I DID THAT too have just finished it and about to go to bed ready for Day 2 which I'm super looking forward to! Unusually (in recent times, I really DID feel 'rested' post sleep, as opposed to still knacked in spite of sleep so that feels frickin amazing

There are absolutely some bits where if you were a passer by and glanced through the window and saw just that bit in a vacuum that I can see someone would be a bit 'eh?' at, but IN context and within the overall structure and the structure of day 1 I can attest that there was NOTHING remotely 'woo' about it.

I do think I have been extraordinarily lucky to have been able to speak to people who have used LP to fully recover their lives post ME, each of them independent of each other and wholly independent of LP or Phil Parker (Doctor who designed it), and to have the certainty of their truths with me before I set off (these are people who were very seriously ill, so no different to me at point I wrote the OP ) As that, plus my own decision making vis all, allowed me to go into it with a wholly open mind and an intense belief based on facts & reality that it would work. I can however absolutely see that if you wandered in and you weren't 1000% committed from the off, that it would be incredibly easy to not engage with the process and almost have one leg out of the door and half of your brain internally eye-rolling; by definition, a state that is not going to bode well for success (NB: that is NOT me saying that anyone who has done it previously and for whom it hasn't worked for somehow failed and it's 'their fault', merely me pointing out that anyone who goes anywhere with a belief that whatever it is they are doing is not going to work is likely to have those beliefs reinforced rather than overturned). I hope that makes sense? (I am writing this at 01.20am as didn't want to go to bed without updating on here, for myself as much as for updating you lovely lot IYKWIM.

So, I am now off to bed and feeling massively massively encouraged and positive about all - and that in itself is light years ahead of where I was

One other thing, some bits that were touched on (not the LP itself, but some very hands on examples of the immense power of the brain to directly alter physical state in the wider context) reminded me HUGELY of the sports scientist guy who coached the GB cycling team and wrote a superb book called The Chimp Paradox; and LP and ME aside, that is a book I'd recommend to anyone for anything as it's so good it's almost spooky*

Hope everyone is in their own best state possible, and I am thinking of all of you

Day two tomm

Wish

*Q: Ask me what I did with my book after sskim reading and thinking yeah that is bloody BRILLIANT stuff ???

*A: I dumped it somewhere in the house and never once bothered using any of the tactics that my brain had eulogised about as I read it....

That's an epic post

It sounds like you've got so much of of it already - hope that today is just as good!

Just off for day 2 now - will duly report back

I'm glad you found it helpful.

I think, bearing in mind other people now or in the future might read this when they're considering doing the LP, that I want to address what you've said about belief.

I can howeverabsolutelysee that if you wandered in and you weren't 1000% committed from the off, that it would be incredibly easy to not engage with the process and almost have one leg out of the door and half of your brain internally eye-rolling; by definition, a state that is not going to bode well for success

I know you go on to say it isn't about fault but this is one of many reasons I hate the LP. Because it kind of is about fault.

We're in the 21st century. What other illnesses have to rely on belief to ensure their treatment works? Does one's oncologist say, well, we've got this really great chemotherapy but if you don't engage with the process I can see that this might not help you. Or if you have pneumonia and take anti-biotics, does the doctor say, make sure you believe they'll work or they might not? If a treatment works, it should work regardless of your belief and yes you have to consider the placebo effect but that's still a separate thing to saying a treatment only works if you believe in it.

Victim blaming is not ok. I know you don't mean to do that but can you imagine how those of us feel who've done the LP, who've wholeheartedly believed in it and who've come away feeling no better. I can tell you it makes one feel tremendously guilty, inadequate and sad. I once watched something called God TV. The two presenters were telling people God was going to grant great healing if people prayed together, touched the tv screen and had total belief they'd be healed. Afterwards they said, God is telling us now that some people followed your instructions, touched your screens but in that moment had the tiniest bit of doubt and therefore you weren't healed. Can you imagine how shit people felt at home if in that moment they felt their tiny seed of doubt meant they'd been denied healing.

The LP is based on NLP. It has a lot to offer people. It makes a lot of sense in a lot of ways. But if someone doesn't get better using the LP, that is due to inadequacies of the programme and not about their belief. Barbara Ehrenreich has written a very good book about similar issues. Positive thinking is great; it isn't some great cure all though and you aren't to blame if it doesn't make you better. And sadly yes, NLP does have elements of woo to it. Some practitioners will tell you 'we only use 5% of our brain. Imagine what we could achieve if we used all of it.' That is completely false.

This thread is having a negative impact on me now so I'm stepping away. I still wish you luck just bear in mind there are other sufferers reading this who are vulnerable. Lots of people aren't helped by the LP and they don't deserve to be made to feel bad. As I said, that's something for the LP to address, not individual sufferers.

WishToBeWell I am delighted that things are going well - I am an ex LPer and it certainly changed my life for the better . (9 months totally bed ridden now active up and functioning and have been for 10 years since LP). Carry on Duing positive

Chchchchange I read Wishtobewell thread differently from you and did not see any victim blaming at all. Have you done LP? It is way more than NLP. It does work for many and like all treatments it may not be suitable for everyone.There is no reason to blame yourself if any treatment is not the right one for you. I hope you feel better soon

I know your views obv Ch as you've asserted them (tho never aggressively or projecting failure out as per Annie's unique post) which is why - even at gone 1am! - I was SUPER careful when choosing my words. What I did NOT say (& WOULD not say, as it would be pure bunkum and cruel bunkum at that) is that 'if you do/did LP and it doesn't work then it's your fault for not believing/believing in it'.

Didn't say that, would never say that, don't believe that.

What I DID say and was trying to convey, is that I could see just from yesterday that if one were to go in there NOT believing it would work, then it would - de facto - be doomed to failure. There was one person there who was there patently under duress, so whilst the rest of us suspended our innate disbelief and chose to believe in it - based on the real life evidence each of the rest of us there has seen and knows about (in my case, 3 separate people; for someone else it was 2 family members, and that we wanted what they had - this sole person simply did not engage and just went through the motions and eye-rolling at some stuff. Whilst I can't 'presume' this to be fact, my gut instinct tells me that this will pretty certainly not work for her as the bottom line is they won't really even be able to have a shot at it as they are not participating in it as they didn't believe in it from the off.

That is THOUSAND miles away from saying it is someone's 'fault' &/or 'victim-blaming' in event someone does it wholeheartedly and it, for whatever reason does NOT work for them.

Right, now I've been as clear as can POSSIBLY be on that distinction, I'm going to tell you what I've just done

I have overtly managed to circumvent a various number of shit-holes that up until 2 days ago I sank into every day, I would tell you what a couple of them are as they were and remain UTTERLY mind-blowing to me, but - precisely because they are SO fucking mind-blowing, I can well forsee someone maybe coming along and 'correcting' me or telling me I'm mistaken when - as a statement of fact & certainty I can tell you that they are not! And TBH, if this wasn't me, wasn't my reality today, then I seriously doubt I'd believe it if I read it either so mahoosive are a couple of them [grin

AND THERE'S MORE...... !!!!!!!!!!! You do not need me to tell you how ill I was as is clear in my OP. All shopping in via Tesco or Amazon, bedbound c.18-20 hours a day, housebound 24/7, 7/365 only leaving the house in any past I can recall for hospital or doctor appts and then with HUGE assistance.

Well today - right NOW (typing this is literally the 2nd thing I'm doing as just got in as wanted update as soon as I could!) I have just got in FROM GOING SHOPPING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I went to the mall nearest me, parked in multi-storey, walked 4 flights of stairs down into shopping centre and then halfway through it to reach my destination of the massive new gluten free range in M&S food hall, stopping first wholly unplanned at a new shop that has appeared since I was last there to buy a BEAUTIFUL print that uncannily sums all of this up; some gorgeous candles, and a few other bits.

Then marched on from there to M&S where I wandered around the store for half an hour, only to clock a host more new shops and notice where ones had gone - all of which served solely to reinforce just how long it has been since I was last there (& this is somewhere I love as I'm a shopping kind of gal and this mall has pretty much every shop I could wish for in it, yet somewhere I haven't even stepped in for over 3 years now... until today

I gathered a haul of yumptious GF things including spaghetti carbonara, quiche, scotch eggs, and cheese cake - none of which I have had since my Coealic diagnosis over ten years ago so just THRILLED to have been ABLE to go there; THRILLED to have the opportunity to pick the food I wanted rather than pick from the limited GF options that Tesco have (my having been WHOLLY dependent on Tesco for years now). I then did the whole meandering walk back to the stairss, then up the stairs with the bags, and then home.

AND I FEEL FUCKING FANTASTIC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And THAT was on top of^ my 2nd consecutive 8hr day out when this time last week being out for just half an hour would have topped my wish list - let ALONE be able to go fucking shopping in store of my choosing!!!!!!!!!! I am DELIRIOUSLY HAPPY - JUST OVER THE FRICKIN MOON

And yep, I AM tired, but its a 'healthy tired' - IE aa consequence of all I have done, NOT that wretched wake up with tired and forced back to bed within 2 hours of getting up tired [joy emocion] as yep, this morning I woke up post a REFRESHING sleep - LITERALLY FOR THE FIRST TIME IN YEARS!

THEN did hours drive, 6 hours engaged brain & a bit of physical work, another hour back, and THEN the shopping excursion

And ALL OF THAT was just today, on just Day 2 of the 3 days

I don't need anyone else to tell me it works now, as now I know for a fact it does. It is that real and that simple. And I certainly don't need people telling me it isn't real, or it won't last, or anything like that as a) I won't and don't believe that or anyone 'telling' me that, or 'correcting' my reality; and b) I'll just politely skim read and then ignore - as no-one can tell me that I am not now already light years away from when I wrote my - pretty heart-wrenching and just utterly desperate - OP just 19 days ago, and a reality within that that was maintained until this Monday but started shifting yesterday resulting in that refreshing sleep, and has continued today to a place I had not dared to hope I would ever be again

Absolutely I'm going for a rest now, as I'm abit tired as this bod is NOT used to moving, but it's a GOOD tired, borne of a long day and exertion but de facto on atrophied muscles and a stamina borne of years in bed, but that rest will be for one hour only and after that, I'll be having my (gorgous!) dinner AND THEN HAVING A BATH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

MASSIVE everything to all of you, but ESP to HappyHello & Rainybow

Wish x

I forgot to say, the reason posting was the second thing I did is because the first thing I had to do was unpack and refrigerate the lovely M&S gluten-free haul [nom nom nom ]

And my manners went missing a bit there too, as I forgot to say hello; thank you; & welcome to Cheerful! And yes Cheerful, Ch has done the Lightening Process but unfortunately it didn't work for her, something I wish I had a magic wand and could change for her. She has however been lovely and gracious enough to never project inevitable failure of it on to me, and has made her arguments against LP in a contained, polite, and non-projecting way - something that helped me enormously after a brief but vicious and pretty attacking post from someone else (further upthread).

Fantastic to hear of someone else it has long-term helped Assuming you don't have hairy hands, my list of people I personally know or know of who have done LP & then recovered is now up to 4 - 2 of whom I know now in RL, and one of them being Lucy Robinson (the author who was struck by ME and wrote a piece for STYLE called 'I Chose Happy' - I'm pretty sure I've linked to it, but if not then it's an easy google!

About to do some homework now on what we covered today, as well as going over the basic steps of yesterday fair few times and then have my first - mouthwatering looking! - Spaghetti Carbonara in over 10 years!

Day 3 tomorrow

The things that are found wrong with ME patients, how can the LP fix them (and fix them so fast)? That's what I don't understand.

Sweet Jesus

No time for an epic expansion on this as need to leave for day 3 shortly, but HAVE to share this magical event with you - I have just had a BATH.

Last bath was pre hospital Nov/Dec and since then been reliant on professional hospital bedbath wipes but now not only had a bath (& BEFORE have even gone out FFS) but also shaved legs forestry commission job and underarms circa mid 70's pre shave

no longer have anywhere to grow about my person

Wish

That is brilliant news wish

I agree kate - how does it work?

I don't have CFS/ME but have a disease which causes chronic pain/fatigue and is very disabling.

I am very pleased you feel so much better wish but I genuinely can't understand how such a huge and instant recovery from such physical symptoms is actually possible?

The stuff about "needing to believe in it before it will work" does make me hugely sceptical I am afraid. No ones needs to "believe" that (for example) chemotherapy treatment will work, it has a physical effect on your body regardless. Of course a positive mental attitude has a beneficial impact on physical health, but how can your physical and very severe symptoms of fatigue and pain be "cured" from what is essentially two days of work on your mental attitude?

I really don't want to come across as snarky or rude, but as someone effectively crippled by debilitating pain and fatigue, seeing someone in the same "state" (apologies for poor wording) then able to resume their normal life within the space of two days - how does it work?

I would genuinely like to understand how such a severe physical transformation can happen. To me, it wouldn't be enough to say "it doesn't matter, at least it's happened" because to me, and I wonder if I'm alone here, your posts of such an incredible and swift "recovery" unfortunately bring to mind that old cliche of "it's all in the mind", which, I don't believe is actually a beneficial thing - quite the opposite.

"CFS/ME" is such a broad diagnosis the way it's currently used in the UK, that people with a "CFS/ME" diagnosis inevitably have a huge range of conditions.

For some conditions, LP may have something to offer. And that's true even if it's not working in the way the LP practitioner believes...

I hope Wish gets something positive, sustainable and non-harmful out of her course.

I completely agree CFSkate. I spent ages telling myself I wasn't really ill (even now part of me doubts I really have it), this sounds like part of this LP, you have to tell yourself you aren't ill. I'm pretty in such a huge difference after one or two days and I'd be expecting some sort of crash/payback. It's huge for someone with ME/CFS to go from nothing to everything. It kind of makes a mockery out of our illness if I'm honest.

And if it's such a great cure then why does it cost so much as it wouldn't be accessible to everyone? I'm out too.

I keep telling myself I should be able to cope, Im not ill but always crash massively after it. Not all my friends I've met throught hte kids know I have ME/cfs and I forget that going abck to lie down after school run/ waking up exhausted isnt universal. I hoped that maybet his thread had something to offer me but I dont think the LP will be it.

Exactly the same here G1raffe.