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

DH has had probable fibro myalgia over many years but, after seeing every type of doctor on the planet, was eventually helped by his GP prescribing Seroxat anti-depressant.

The fibro myalgia caused him extreme 'phantom' pains, with a seeming neurological cause. After 3 months of taking the Seroxat, his symptoms significantly lessened (so not an overnight cure).

The pain can lessen down to zero. At which point, DH slowly starts reducing his pill dose, as he dislikes the idea of being on anti-depressants. This is an unpleasant experience, as there are weird side effects in coming down on the dose. But he finds that he can then not have to take any pills at all, and be pain free.

Obviously this is life changing for him. If the pain comes back, he starts taking the pills again and after a while the effect kicks in. He is always scared that they won't work one day, but this has been the status quo for probably about 10 years now.

Seroxat is controversial in general, let alone for FM, so do investigate thoroughly, but I feel it is important that sufferers should know about something that has been so successful in DH's case, just in case it can help others.

Pausing Thank you SO much, it was that one and I've just PM'd her

If she is kind enough to answer, will share on here as this now feels more like 'our' thread than 'my' thread (something for which I am really grateful), like it feels like it's helping Waggles too?

HeyMcWay Thank you for your link too, will look after rested

I wouldn't go near Dr Meuschel with a barge pole to be honest I've never heard of her before but homeopathy? No thanks! There are far too many quacks out there preying on vulnerable people. All you will gain seeing her is an empty wallet.

AnchorDownDeepBreath Thank you, thank you, thank you, so much for posting, it's that hope which (I believe anyway) is simply vital (& is why that other thread really really isn't for me as seems to be more about stuck/ill forever rather than moving forward with hope - I mean no disrespect to anyone on there and if that works for them, but for me, it really was a bad place to immerse myself whilst I read that thread)

Anchor When you write:

'I wouldn't recommend my way of recovering, really, it was an all or nothing approach.'

Can you explain what you mean please? Genuinely desperate to know so please post again if you can? As over last couple of days I have been struck by something which I appreciate poss sounds nuts but I'm now wondering if it was what you did?

What I've been thinking of doing is possibly just entering a period of pretending I'm NOT not well. And just acting accordingly in so far as I remotely can. Like, living like a normal person does (altho appreciate the risks of crash and burn are potentially massive, hence pondering it first).

Have been better with food today which need to thank you lot for as without the prod I don't think I'd have pushed myself. Have just had had a gluten free ham sandwich with cucumber AND at same time made myself a cheese sandwich to try and nibble later

Apart from fact know good to try and eat full stop, is also good as it means I can take some of my vits with that food meaning less to take with my one evening meal (& reason that's good is the nausea makes it really fucking hard to swill down c.25 tabs & caps).

Going for kip now along with Me Before You Audible has become my latest tool in recovery/coping kit - is bloody fantastic for total rest without boredom yet also without effort.

Again, thank you all just so so SO fucking much for being here - has made a huge difference. Literally, life is now pre OP and post OP and post OP is definitely a more hopeful and less isolated place to be

Glad it was the right link.

I've gone more along Chchch's lines for my own M.E. Especially after seeing a friend with terminal cancer pay money for outright woo.

But other than being aware that there are no miracle cures, and there are plenty of people offering unproven "treatments" (from good or bad motivations), I think we all just have to chart our own course between hope and potentially making things worse.

I looked carefully at the NICE-recommended GET my GP extolled; discovered it was unscientific cobblers; and was subsequently congratulated by the neurologist for not having inflicted it on myself.

The recovery stories I heard suggest that, for many, severe M.E. is self-limiting. So I take a Do No Harm approach, pace myself, and wait. And am now recovering. Would I recover faster if I tried any given "treatment", or would it cause a relapse? No one knows.

"What I've been thinking of doing is possibly just entering a period of pretending I'm NOT not well."

I understand the temptation and share it slightly too often.

But even the "it's all psychosomatic" literature pushing GET explicitly states that it's really important to start by acknowledging you're ill. And that attempting to carry on as you did when well will cause you to crash.

Waggles just wrote you an epic length PM only to hit send and it say can't send as user doesn't accept PMs - I didn't even know that was a thing!

Pausing I hear you

Right, now I really am off to bed as arms are killing.

I can understand wanting to ignore the fact that you are poorly. It is one reason why I don't spend a lot of time on support threads, actually. If I can read, I'd rather read cheerful silly things.

But it is important to only do the things that are possible and won't lead to later crashes. Maybe you could considering yourself a convalescent, rather than anything more permanent? And convalescing from a serious illness can take a long time with some backward steps, but it means you prioritise your self-care and work towards a positive future.

I found CBT for CFS absolutely wonderful. No one was saying it was all in my head, but the therapist help me accept that I am ill and need to live life differently without becoming massively depressed about it. I also developed mantras for the really bad days. Instead of lying there freaking out, thinking, 'Is this what my life has become? Who am I? What will become of me?' I now think, 'Oooh, a bad patch. In a bad patch I need to rest much more and eat very carefully. Eventually they pass.' (Combined with getting in more help, cancelling things, communicating my needs better, etc).

Although I must say I am not generally as poorly as you, I have had the occasional month where I can hardly move. Just so you know I'm not being completely blase about how ill you are.

I think that with some support you can develop a better way of managing that will lead to a better quality of life for you.

How are you doing OP? I've been thinking of you lots.
What a lovely ds you have and what wonderful words. i don't think any mother could want to hear better. You're still his mum. he loves you.

Meditation was my starting point for recovery. Have you tried that? It gets you into a proper resting state.

Do you have any routine to your day.

Gentlest hugs to you and be proud of the mum you have been, are still and will be again x

Building I like the idea of 'convalescing' - I think that is maybe where I've sort of got my head to?

Where I'm in a better place TY, had truly horrific week or so of waking up wracked in pain everywhere but (touch wood) has passed. And YY r DS, my heart just bursts every time I re-read that little card

Am working on routine and with food and basic self care being heart of that but I know it will be along journey due to combo of knacked and nauseous.

Today has been better tho - I had a sandwich earlier and some Baxters Chicken and veg soup this eve, was absurdly proud of myself

I know many people have warned me off anything that costs money, but I remain interested in both the Lightening Process and Mickel Therapy. Have 30min call scheduled tomm eve with practitioner of the latter (for free) to hear more about it. Will report back.

How is everyone else doing? Waggles how are you?

Stay close lovely folks, helping me enormously

Yes I did. Had an official diagnosis of ME/chronic fatigue. It went after I had my first daughter who is now 8. I've been given two theories as to how it went.

1. pregnancy sort of 'reset' my immune system, like how people with allergies or other illnesses become cured due to pregnancy. Because CFS is an autoimmune condition, and the immune system makes changes during pregnancy so you don't reject the pregnancy. That's how it was explained to me anyway.

2. The ME was possibly me suffering from side effects of depoprovera contraceptive injections.

There are lots of recovery stories out there, it isn't a life sentence. I really hope you see improvements soon.

Hi everyone, I am diagnosed with fibromyalgia but I do doubt the diagnosis. can I ask how many of you with ME/Fibro have an abnormal brain MRI?

My many troublesome symptoms are neurological and my brain MRI shows numerous high signal areas in white matter of brain. Had a lumbar puncture and visual evoked potential tests which were normal so Neurologist said does not indicate MS

So I am really puzzled as to what is wrong. I am so ill I cannot work, most days I cannot even walk in a straight line as my balance is shot to pieces!

Yes, I can relate to the "end it all" thoughts. I feel so useless, just sat at home waiting to die. At my age, I should be working and living life instead I am just at home pottering about the house, very isolating.

wish, have you ever had your b12 levels checked? B12 deficiency is often misdiagnosed initially as CFS. It makes you bone-tired (I'm on my sofa corner right now) and very breathless. Your symptoms sound similar to mine, albeit more extreme. Do you get any numbness, or tingling in hands/feet? A sore or red tongue can also a symptom, but ive never had that.
If you haven't had b12 checked, please ask your GP! It's treated by b12 injections which are generally needed for life. Untreated, it can have really serious and irreversible impacts.

Just coming on to say that I have recovered as well. I would have had it for 3 years by now but did the Lightning Process in December and felt an instant difference. Over the course of the next week I improved daily.

I have to say that now I avoid most talk of CFS as I feel this actually contributed to my symptoms. I had a physical illness but feel that my circumstances and stress levels seriously impacted on my symptoms. Now that I have recovered I am trying to work on improving my stress levels etc.

I really feel for you as I can feel the desperation in your posts. This was where I was about this time last year. It took me a long time to be able to feel strong enough mentally to do the LP.

Hyacinth I have had several MRIs and all came back normal. There have definitely been many iffy Neuro symptoms for the last 7 years. I was investigated thoroughly for these but all ok. I think there is still a lot about the brain that we just don't understand.

Feeling staggering tired right now but is imp I post (to me, is imp iykwim).

Hyacinth My MRIs are all always clear but I am a serial migraneur so alrady had a neuro for that. BUT - my daily migraines (controlled now via Botox Protocol, last done in Dec an due now but have to figure out how to get to hosp for them) were DIRECTLY due to fact I had undiagnosed Coealiac for so long. Relevant bit for you is that ALL of my symptoms were Neuro - none gastric. Google Dr Hadjivassilo (sp?) at Sheffield Hallam, he runs the only NHS clinic in country for Gluten induced Neuro issues. It was only by reading of his research 15 years ago that my coeliac was DX'd (after seeing EVERY fucking specialist under sun).

Am tiring but will push on as this imp - you MUST have a test for coeliac disease (simple blood marker initially). My MRIs ARE clear but had I remained undiagnosed then by now they would be flooded with white matter changes AND all my neuro symptoms wouls have worsened. Too tired expand on them all now but they were varied, consistent, and fucking terrifying. Beseech you to get tested as unlike the gastric symptoms, the neuro symptoms do NOT all clear up if you get to a GF diet too late (hence my migraines reminaing, tho rest - e.g. balance issues, visual issues, spacial issues - all gone within 2 years of DX).

Fuck. Am actually genuinely breathless simply from typing that lot. Is maddest illness ever

Be back after rest x

8building2016 Mon 07-Mar-16 15:59:34
I can understand wanting to ignore the fact that you are poorly. It is one reason why I don't spend a lot of time on support threads, actually. If I can read, I'd rather read cheerful silly things.

And Rainbow re not concentrating on CFS as made it worse you believe.

Both written what I believe and how I view this. Hence this NOT being a 'support thread' like other thread is (w just acceptance of life long sentence) but more a I WILL GET BETTER BUT I JUST NEED TO FIGURE OUT HOW type thread, and also one of HOPE* (vs the misery elsewhere).

Rainbow I felt battered after wading thru other thread (again, no disrespect to them) and apart from that being down to effort involved, I GENUINELY believe it was also down to being immersed in such (what felt to me) despondency and inevitabity.

Will try post again later but if not then will DEF post after spoken to Jo/the Mickel lady - v interested hear what she has to say even tho my instincts are leaning towards lightening process as reality is there just ARE a fair few people saying THAT helped them and they cannot all be wrong?

Sorry - feel rude when can't answer all post, but will be back.

Is truly mad tho that just sitting in one place and typing for 10-15min can leave me with screaming shoulders and physically breathless.

www.mickeltherapy.com/testimonials/i%E2%80%99ve-got-a-life-again-a-life-that-seemed-so-far-out-of-reach-during-the-countless-hours-i-spent-just-staring-at-the-wall/

www.mickeltherapy.com/testimonials/i%E2%80%99ve-got-a-life-again-a-life-that-seemed-so-far-out-of-reach-during-the-countless-hours-i-spent-just-staring-at-the-wall

After cpl v brief chats before today, just spoke for hour to the Nickel therapist who wrote the above (picked her as sshe is NHS/Midwife etc so thought less likely to be woo woo land)

Zero charge for session/time.

Resonates a lot with me. At least I have something to think about. I refuse to accept I will be this ill forever which why hope so important (tho you all seem to have buggered off!!)

Hugs and spoons for those who need them

Please, OP, please be careful! I tried pretending I wasn't ill, I tried living life as I wanted it to be, and all I got was more and more ill.
The Nickel therapy and Lightning process may well help people who are suffering from ordinary chronic fatigue or from a psychological disorder. These procedures CAN'T help people who are suffering from physical disorders such as CFS/ME, or a severe vitamin deficiency. Please, please take care!
Do, please, listen to your body.
I think the one BIG activity change that made a huge difference (apart from vitamins, etc) was to stop watching TV. It sounds odd, I know, but I found that the flashing pictures and blaring sound stressed my brain far too much, tired me out, drained me. I can now watch the odd hour or two, but I do notice the strain it puts on me.
I have not been mumsnetting much today as I was in bed all morning, and had to go out shopping this afternoon, so rested this early evening. 'Tis the way!

Thank you Annie

I am being careful but I am also keeping an open mind - I'm not even cconvinced my diagnosis are correct TBH. IE the 'proper' definition of ME according to ME Assoc. seems to include overt changes that can be seen on MRI - yet ALL of my MRIs (and CT and CT-PET, have been scanned to within inch of my life!) ALL clear. Too tired hypothesise about my own situation but I do have some clear beliefs about what helped me get here and in turn they seem to offer a possible route out too (hard to explain and no energy for an essay right now, but I will try and explain it in a subsequent post).

Vis Mickle Therapy, was impressed that the therapist was prepared to spend an hour+ explaining to me at zero cost.

Vis LP, am hearing too many stories of it working (inc. 2 on here and 2 or 3 in the '50 Stories of Recovery' book that someone else mentioned on here) to dismiss it out of hand. Having just seen the below, am posting the links for anyone else who may be interested - not condoning or condemning but just putting it out there

Martine McCutcheon on ME - was wheelchair bound]]

Finally about to eat - fish pie, sweetcorn, and cherry tomatos, so feeling positive that managed prep that lot - and will watch House of Cards with it Truly, would have been lost over the past 12 months or so without Netflix!

I watched entire series while ill - I would not have been aware of Grey's Anatomy or Outlander without my CFS!

I just wanted to say that I am still here. I don't know how helpful I am but I am here

I would say that I have found that I am 'out of the club' since doing the Lightning Process. I do find it quite hard to read that I can't have had it properly, or it must have been psychological. I certainly had a diagnosis of CFS and feel better now. The symptoms were very real at the time and have now gone. I am not sure why I am saying this really (this is one of the reasons I tend to avoid discussions about CFS).

I haven't heard of Mickle Therapy but it is good that they will offer some time to talk with you. I had a similar experience with my LP practitioner.

RainyBow Please don't go

And I am leaning towards LP and have just downloaded the audio book from the LP site that is ME/CFS specific to check it out more.

Would hate to be abandoned here

overdid it today. Still here tho.

Committing to recovery is important. If LP doesn't work (it might! But might not) there are many options to try.

I am interested (vaguely at this point) in Dr Gupta's method. There are YouTube videos.

< waves to building >

I haven't' heard of Dr Gupta but shall youtube. Have you tried anything else yet? LP seems to have a hefty number of folks has worked for inc many of the credible variety (2 pp's here, large no. of folks I 'know' from my prev life inc Esther Rantzens DD - who really genuinely was catasrophically ill - and many others on practioners sites who I guess COULD all be fakes but seem unlikely)

Mickel therapy has at least 2 of the 50 recovery stories book credited w recovery, tho less (as far as I can see) in number and less in credibility IMHO than LP.

Have just spent ten min cleaning kitchen (heaping stuff into binbad and loading dishwasher) so feeling vaguely less revolted at self right now.

Really hope everyone stays, not just for me but for others suffering too but who are also looking for a way out rather than just accepting their lot or feeling that there is nothing more than can be done

If I got to that point then I would exercise Simon's Choice but that couldnt be for fair few years yet and ONLY if I was CERTAIN had tried all and this really WAS it forever IYKWIM (and no way could do while have DC under 21, so that's 7 years left to fix this which I DO believe is poss )

Spoons and hugs all
And Waggles if you're reading but can't post please know am thinking of you