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

Am fucking off this thread - I'm not wasting my spoons on anyone willing to waste theirs on the crap that is Lightning or any other stupid rip off fake cure. If that's all it takes to cure you, then you've not got ME/CFS, so not my people.

WishToBeWell - the last thing I remember reading about Esther Rantzens DD Emily Wilcox was that she was cutting out gluten.

Just coming back on to say hello

Well done on your tidy up session - I know how hard it is to manage, and how fed up you can feel at living in a mess. I kept blaming myself for it all too. I know that isn't right, but when you're lying on the sofa and can't do anything except looking at the mess then your emotions can get the better of you.

I am not sure what to say about Annie's comments. I can feel the anger and frustration which is why I usually don't tell my story. It is difficult to hear that I was never really ill and I often find that reading negative things brings back a feeling of CFS, the one with the heavy weight in my chest.

All I can say is that I had a diagnosis of CFS and have now recovered. Maybe I didn't have "true" CFS, but then maybe you won't either? I felt that my body needed resetting and something resonated about the LP. I wouldn't feel right recommending it to you as it is a lot of money and doesn't always work, but want you to know that it does work for some people. I have met others that have recovered by doing it.

Probably just rambling now... Hope you are having a good morning

I was called for the NHS over 40s health check last week. Saw the nurse and she went through the standard list of questions, measured my height and weight. Then proclaimed that I was overweight and needed to do some exercise . Pointed out that I was struggling to lose weight because of borderline underactive thyroid, diagnosis of CFS meant I was exhausted even after a short walk and pains in back, hip, knee, foot, shoulder etc etc meant exercise leads to chronic pain. She sat there, overweight herself with hacking smokers cough, lecturing me . Came out feeling depressed and wondering what the point was of that appointment. Well, at least my cholesterol levels are ok and I don't have diabetes, so maybe some good news in there.

Just managed to get out of bed and have seen this - 'this' being my only outlet, my only communicaation with the world, my only source of community and of hope. And I am in fucking disbelief and with tears in my eyes.

Quog that is beyond shit and I'm both sorry and for you. I think the only thing worse than being this cell-deep dead and ensconced in pain 24/7 is other people telling you you haven't fucking got anything wrong with you.

That includes both those too ignorant to know like your nurse, and also Annies - pretty out of the blue - words. Annie, I don't know if you are having a particularity bad day, but respectfully I would ask that you don't tell me I'm not ill (which is the primary insinuation of your post).

If you too have formally diagnosed Fibro and ME then we are in the same boat; the fact that we might be sailing in different directions doesn't mean you need to be so aggressive or nasty. I want to hang on to hope and it's hard to ignore the clear evidence that exists that LP HAS helped some people. It wasn't very long ago that I was actively suicidal but -as you might have spotted from my 14 yr olds beautiful card - that isn't an option for me so the only 2 routes left are accept this is my lot and wither yet further (if that is even possible) or actively seek hope.

If that angers you then I'm sorry but it doesn't give you the right to either tell me I'm not ill or be so very personally aggressive

I am in tears right now and have no clue how or why anyone WITH THE SAME FUCKING DAILY HORROR OF THIS ILLNESS APPARENTLY could or would EVER be so nasty or dismissive of someone else so ill. If you wanted to go, then you could simply have hidden thread, you didn't need to have a pop at me and you very def have no right - and nor ARE you right - in suggesting I'm somehow not ill.

I haven't had a bath or shower since before Christmas, I can barely prepare one meal a day for myself, I am in bed for 18-20 hours out of 24 and when Im not in bed I'm stuck on the same corner seat of sofa where I am right now But no, of course I'm NOT ill if I want to be looking at fucking ANYTHING that may help me

Am going back to bed now. Eaten nothing as imposs even make toast as so weak and nausea horrific in any event. Am genuinely bewildered by that post. Why? Just fucking WHY?

If you have a 'borderline underactive thyroid' and a CFS diagnosis, you really do need to hook up with ThyroidUK and start to work through what is going on with you.

I was diagnosed with CFS by a consultant endocrinologist in 2010, at wihch point I had all the usual symptoms; all over pain, fatigue, poor sleep, weight gain, hair loss, constipation etc etc.

I did not have CFS at all, I actually had a severe vitamin D deficiency, a severe ferritin deficiency, low vitamin B12 and folate and a failing thyroid, but he was too lazy to deal with any of those things.

I had little or no help from the NHS, but have managed to fix the vitamin and mineral deficiencies myself so they are all now at optimum levels. Thyroid hormone replacement completed the job and I am now 100% well.

I know no end of women in their 40s and upwards who are in pretty much the same position, but who are being diagnosed with CFGS, ME, or fibromyalgia and left to rot, when they are actually fixable. It takes time and encouragement, but it can be done.

Start by checking what blood tests you have had and where you results lie. This is as good a list as any to start with:

THYROID TESTS

TSH (if above 2 needs further investigation)
FT4 (needs to be in the top 25% of the reference range)
FT3 (as FT4)
TPO and TgAB antibodies (positive in Hashimoto's Disease/autoimmmune thyroiditis).

OTHER TESTS

Ferritin (needs to be at least 70 and preferably 100 to support biochemical processes in the body)
B12 (needs to be above 500 to prevent neurological symptoms)
Folate (needs to be around 20)
Vitamin D (see your local protocol, but it generally needs to be over 75, otherwise treatment is required)

Rainybow I am begging you to say hello every day

CFSKate Yes she cut out gluten (& her mum is certain that she was an undiagnosed coeliacc, hence some improvement) but she also did LP. After I've rested I will find the link for you

But hey, maybe even her 14 years of bed and wheelchair bound weren't 'real' either if something like LP could help her finally escape this suicidal cesspit and end up going on a diving holiday with her then new BF.

Note to self: Tell big E that little E was never fucking ill and those years were some kind of fantasy in her head if LP could remotely help her

I've come to expect my reality being dismissed by ignorant fuckers who have no clue about its brutal reality, but I've never had and would NEVER have ever expected it from a fellow sufferer (unless maybe SHE'S not ill either so doesn't actually get how fucking ill I and others are? But to suggest that - given prev been clear how v ill she is - would be rude, nasty, ignorant, painful, reducing to tears type nasty. So I'm choosing to go with another person as sick as me just doesn't get why I would try anything as I wouldn't fucking DREAM of telling them that if they do xyz then they can't be ill in the first place

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And now my arms and shoulders are screaming at me for my enraged over typing so >pain to boot. #joy #WHY?

Just read Annie's post. Maybe she was just having a bad day. I had a really bad one on Tuesday and chewed DH up. He's used to it now - knows it's just the exhaustion talking, but I still bad about it especially as he cooked dinner. It's nothing you've said or done - try to put it behind you. Just a random stranger on the internet having a rough day. Everyone else is supportive on here {un mumsnet hug :)}. I completely understand the need to find a solution that works.

ME & M.E.

The LP is hated within the M.E community hence the response you got upthread. Why? Because a) it is based on pseudoscience. Having done it myself I can vouch for that. It's bollocking. £600 down the drain for woo. I want mine back.

b) sufferers going through just what you are feel very vulnerable being told 'oh the LP' works'. If something woo works, it seems to verify we're suffering from something very minor or a mental illness and therefore we're not really that ill. (I know some mental health issues are dreadful but m.e is aa physical illness and we need that to be taken seriously). Anyway there's therefore less money put into research and certain members of the public feel free to mock us if people say woo works.

c) the LP is set up so that it doesn't work for you, you aren't 'doing' it properly. People do it because like you they are desperate to get well. It makes already very ill people feel very guilty and ashamed and shatters their hopes. It doesn't cure most people. Some it pushes into even worse health.

I understand you wanting to do it. How can I judge? I did it. Like you I was desperate. I regret it. It's shit. Why do some people get better? I'm guessing mostly because of the placebo affect, which can be very powerful. Some people will have (severe) fatigue because of another reason like depression which is still dreadful just because it isn't classic m.e. I can see why the LP would help in that instance.

You sound extremely unwell and like it could push you into being much worse. Please bear that in mind before you decide to do it.

Deperation to get well is one thing. We're all of us completely desperate. There are many people out there happy to prey on that and relieve you of your money as a result. Be very very careful. If any of these cures worked there'd be no M.E sufferers. Sad but true.

Oh and if you want some more legitimate options to try op, some people benefit from the Myhil protocol. I distrust Myhil but she is at least a doctor. It's about eating a paleo diet and taking various supplements mostly.

Many benefit from taking low dose naltrexone, masses of details online as to how to get it privately.

Some patients get hold of anti-virals privately and some see good improvements. This can be expensive, I believe. Some people seem to get them through the Breakspear clinic. Another place I distrust but lots like it.

ChCh Thank you for a post that makes clear why you don't like LP but without any other edge to it; am grateful.

What do you mean by 'anti-virals'? Thanks to the joy of Ex I have HSV2 for which I have Acyclover (sp?) for if/when have flare-ups but be interested to know more about what you are writing about?

And when you write: 'Some people will have (severe) fatigue because of another reason like depression which is still dreadful just because it isn't classic m.e. I can see why the LP would help in that instance.'

THAT is precisely what I meant by questioning my own diagnosis which I know was a diagnoses based solely on exclusion of all other things (like hyperparathryoidism which looked like a poss at one time) my Endo and Neuro could think of testing me for. Only after failing to find anything (bar the Vit D deficiency and the Selenium deficiency) did they then pronounce ME and Fibro.

Yet there is a massive part of me, as I wrote before, that doesn't ness belive the diagnosis precisely BECAUSE it wasn't on that was 'reached' but rather one which seemed to be slapped on when they couldn't find any thing else.

I wrote in much earlier post of a succession of vastly stressful (& terrifying) events from 2006 onwards and I often wonder simply if my body 'burnt out' as a) I functioned simply on adrenaline for so long, and b) at no point did I ever 'stop' and process any of what had happened -as I never could as one simply bounced into the other and I just kept pushing through the most unimaginable of things (any ONE of which alone would be massive for someone, let alone ALL of them and all of them borne by me and me alone).

So one theory I have is that the reason I am so desperately ill now - and why Chronic Fatigue seems nearer the mark than ME (given MRIs show NO white matter change) is that maybe it is literally just the MOST chronic of fatigues post burnout (& post viral too). And that then maybe all driven by that - sleeping for 14-5 hours in the same position so waking up 'locked' in that position and the pain that THAT drives; the fact that I am so fucking fatigued I can't 'do' any of the normal things that normally sustain health and keep you healthy and in homoeostasis, IE routine, good food, good exercise, good balance, healthy interaction with others. And then the inevitable depression that does follow given IT is so fucking depressing.

No clue if I'm explaining this properly (is hard to describe what is in your head IYKWIM) but what I'm driving at is that there has to at least be a possibility that me/my body DID simply burn out; that I am sustaining it there as doing nothing to improve it (& quite a lot to prob worsen it - diet etc); that depression is then exacerbating it all. And that as a pp wrote, I along with many others was just given this 'label'.

The one thing I do know to my very core is that if I don't want to get better &/or BELIEVE I will never get better, then I - nor anyone else with that mindset - ever will.

So I WANT people like Rainybow & HappyHello TO post their stories of recovery (via LP in their cases) and Fanjo etc to post of THEIR recoveries over time and pacing etc.

As regardless of what I/you/anyone 'calls' it - clearly Rainybow & HappyHello & RJ and Fanjo WERE all desp fucking ill too. And now they are not. And I can't and won't ignore that.

Ok, knacked after writing that lot and am about to journey to fridge to get a ginger beer and then watch 'Amy'. I hope everyone else who is suffering is also somehow managing to get through their day, and that their day is not too grim

How or why or on what basis would anyone tell author Lucy Robinson that, given she has recovered, she cannot possibly have been ill in the first instance?

Surely it's a message of hope, rather than of one to be dismissed?

I genuinely don't get it

OP, honestly, you cannot let them get to you. It is not good for you to get worked up so you have to let it go.

And only you know how much money and time you have to risk on different treatments. For all we know you are loaded and £600 is easily lost.

But there are lots of bits of free info you can get to research all these things further.

You could spend no money: going back to GP for more bloods, looking at videos on YouTube, getting advice from people on here.

You can spend £50 getting supplements or seeing a CBT therapist who specialises in CFS once (or an acupuncturist or an osteopath or a homeopath).

You can spend £50 getting Fightback to make sure you are getting all the benefits/services you are entitled to and getting some carers to wash your hair, for instance.

You could spend £250 (or something not sure??) getting a DVD course from Dr Gupta or the Optimum Health Clinic and follow up coaching.

You could spend £500 on an allergy consultant or the LP.

You are desperate. I understand. Map out your options and cost them up and take about two weeks to research a few more things and what seems right to you.

Anti-virals - some clinics will test you for different viruses (I think things like HPV and Lyme) and if they find something can give you anti-virals/long term anti-biotics. They help some people. For others, it's just more money thrown down the drain. With a lot of these private clinics, unfortunately you don't know if they're quacks or telling you what you want to hear. I'm very sceptical about them. But they do seem to help some people, as the LP seems to help some people.

I know what you were trying to get at. I had a period of intense stress before I got ill too. I'm sure it's related. If nothing else it meant I was hugely run down.

One thing you can do for free and will be beneficial even if you are completely well is listen to relaxation hypnoses on YouTube.

The HPA axis is thought (known?) to be involved in CFS. en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis#Stress

So things that are deeply calming are very important.

I listen to this regularly. 20 minutes. Secular, not woo.

I know that amitriptyline is prescribed not as an antidepressant (although that is helpful) but mainly to help with neuropathic pain and to foster deeper more restorative sleep. So if you go back to your GP and ask for amitriptyline (low dose, 10 mg at first) that is a possibility. Any side effects, stop taking it, no harm done.

Also, the ME association helpline has been very helpful. www.meassociation.org.uk/information-and-support-line/meconnect/ They were so helpful to me when I was properly frightened and not getting proper support.

They also keep a list of specialist clinics here www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/ If there is one in your area you can ask to be referred.

Thanks for filling me in ChCh - I really cannot tell you how much the overload thing just resonates with me and makes perfect sense that it could end up destroying you... or maybe what feels like it is destroying me but was/is actually the body's way of forcing you to stop after you've ignored every single warning sign - I'm not sure any of us can know tbh as even the 'experts' are in disagreement, and maybe there are actually many different routes to end up in the same place. Said same place being as fucked as i am now and as others have been and some still are.

I like you posts Ch as you're honest about your scepticism but without trying to project it and you seem like a bloody mine of info too!

Building TY you soooooooooooo much for both of those posts, they are both fab and YY to meditation. Will very overtly aim to meditate daily from tomm (falling asleep on my sofa here so know if I put in on I would instantly fall asleep then wake up in early hours with a cricked neck and locked bod!)

Had an awesome PM from a PP today that has also helped bolster me massively so just thanks to all and do please stay close

Wish

Yes, I have to be careful when I nap. Early evening naps are disastrous! So I almost always sleep mid afternoon before the children come home - by listening to a relaxation visualisation and setting an alarm for after that. If I've been very tired I also try to sleep properly mid morning.

Resting (i.e. not exerting) is definitely not the same as properly deeply sleeping even for 20 minutes.

But listening to those tracks takes the responsibility off me controlling my own mind - I used to meditate properly but am a bit too fucked mentally for that now. The only thing I have to do is press play and not even listen particularly closely. It works its magic.

And also (just because I know you'll understand) actually napping is SO FREAKING BORING but it does work. It does gradually build up in your system. So I make myself actually nap even when I'm feeling quite good.

Building Faintly astonished to find myself in a position where I might actualy be able to contribute but do need share this - I so hear you re napping being so boring but I have found a solution to that

It wasn't (for me anyway) just that I found it boring, I also hated it as it - and the way I felt about having to do it - served to REINFORCE HOW FUCKING USELESS I WAS in some lethal steel like fashion

But all of that has been utterly (I'm talking 180 here) transformed by using audio books on my Kindle As I lie down to sleep now, I put audio book on (currently JoJo Moyes 'Me before You') and listen to it until I inevitably drift off to sleep. That period between getting into bed and falling asleep used to be hell on earth as my mind would torment me with all I SHOULD be doing, and all other people WERE doing, whilst all I was capable of was a pathetic climbing the stairs to reach the fucking bed

But now, I am enjoying the story so much (it's hard for me to hold a kindle and read for any length of time as wrists start to kill so have missed books big time) that I overtly look forward to climbing those stairs, and I LOVE being immersed in the story as it washes all around me as I just lie there until the next thing I know I've woken up 3-4 hours later

It may seem a small thing but it has been transformative both in protecting me from those daily bouts of self-loathing and just brutal self-talk (I would never in a million years to to someone else the way I have done to myself:/) but ALSO in providing me with the first daily thing I actively ENJOY since becoming sick. I also 'hear' the whole story better if I am not the one reading it, I find it envelops me and I get lost in it and hearing every nuance of the story vs. the skim reading I am used to.

And then when I wake I simply use one little finger to 'drag' the story back to the point I last remember hearing it, then it is ready to go again when I return to bed

About to do precisely ^^^ THAT now. Woke at midday, have taken meds with a coffee and now zero choice but to return to bed a mere one hour later - something I used to find dangerously depressing but now approach in a whole different way due to something as simple as audio book (& buying the audio layer after I'd bought the book was the princely sum of £3.99 so more than worth it given what it protects me from)

Will be back later, thank you again for being here - 'here' has become desperatly important to me as has massively helped the horror of isolation that Lucy Robinson describes so well in her article above.

Wish

Building D'you HAVE a kindle?

Thank you.

I forgot to say that one of the things that has helped me is 'How to Be Sick' by Toni Bernhard. It might not be for you but she's fantastic. I think she's written a 'How to be well' too. I got a lot from the first book. Sure you can get it on audio book.