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

Hippo Can you have TOO MUCH b12? Ask as any trip out is hard but happens be a clinic v near me which does b12 injections so if was forcing self out with all that entails (driver, meds, planning) am wondering if to just go have the injections rather than gps to get levels checked again?

Sorry, appreciate to many people the above will be utterly incomprehensible as it would have bn to me a few years ago, but that choice of where spoons go is my reality now.

TY for posting

If you're deficient you start with loading doses every other day - according to guidelines this should go on until you have no further improvement but in practise you tend to get 5 or 6. It's important you are checked though. PA is a lifelong autoimmune condition and you would need lifelong treatment if that's what you have. Once you start jabs any blood test won't be accurate.

TY

From www.pernicious-anaemia-society.org/pa-diagnosis.php

"You cannot overdose on vitamin B12 as it is a water soluble vitamin." You just wee out any excess in smelly wees.

I have a question if anyone knows please, this has been nagging in my mind for a while. I am diagnosed with fibro but have been on vitamin B12 injections for 9 years due to severe deficiency.

I still feel awful. My Gp said when I last had blood tests that "we cannot test for B12 as the computer wont let you print a request off if you are on B12 injections as it assumes you are replenished" so how do I know? Is this correct? I have never had it re-tested since I started the injections all those years ago. I have them every 12 weeks.

Just seems odd to me, anyone come across this?

Hyacinth that sounds v odd to me - also I am aware that many view the amount and frequency of injections you get on the NHS to be wholly insufficient for the problem.

Do you 'decline' prior to next injection as that seems to be common amongst the population who need B12 but are reliant upon the NHS timescales/3 monthly protocol for it?

I have friends who have found Dr Chandy (NHS Doc w special interest in B12) life-saving.

PS Can't believe I just managed to google poss answer for someone, am absurdly over chuffed at this little thing

It sounds normal to me Hyacinth, a couple of doctors have said to me that they don't ever recheck b12 once you have jabs as it would give an artificially high reading. But 12 weeks is not enough in lots of cases (sure I've seen a survey where it says 60% of patients don't feel it's sufficient for them?), you can always ask for more.

Am going to do what Rainybows and the other pp whose name can't remember right now did and what recovered them (& many others from the research I've done) AND what I have now seen confirmed by a senior NHS Consultant as a solution to CFS with a better success rate than pacing or GET.

A week today I'll be attending day 1 of Lightening Process and I am really glad I am - if it fails I've lost a fraction of the money I've already shelled out and if it works, well if it works then it won't just have given me my life back but will possibly save my life.

Ironically the turning point in my thinking process was the pretty vicious and uncalled for post by Annie - it strengthened my resolve to explore all I could to get better as the image of just sitting like this with no hope ever and maybe myself turning into a nasty, bitter person myself was prob the straw that broke the proverbial back of any doubts I'd had. I know, the irony

I know what doubters think and have heard you so I'd be grateful if it wasn't repeated as all I can manage for this next week is to hope and to believe in the FACTS of those who have regained their health and the views of a pretty senior non lentil weaving HCP.

Thank you all for having posted and helping me, I'm grateful

This is where I am going, and it is the same place that works with previously mentioned NHS Paed. Consultant (& his students).

The science I have seen him (the consultant) explain makes perfect sense to me, and Linda (the practitioner) was herself ill for over 40 years with ME so when we speak I know she gets me. And (& in fairness to the Mickle Therapist who did the same it must be acknowledged) she has spent now hours on the phone, answering my questions, and not charged a dime for her time.

I believe I will be well again and if I hadn't started this thread then - in spite of the fact that I have the oft mentioned book of 50 Recovery Stories by Alexandra Hemming, featuring Anna the World yachting champion et al, and which does mention LP in 2 or more recovery stories but which somehow I had just missed - then I would still be sitting here racked with pain, devoid of strength, and without hope.

I started the thread to get hope, and hope is what it has given me so I'm glad this thread is here and that it WILL always be here given we moved it from chat to Health and I hope it helps others too in some way.

Peace & blessings & hope to all of you

I really hope it works - good luck

You always need hope, WTBW. It might work.

And you know what? If it doesn't work, only the most sanctimonious person would lord it over you. If it doesn't work, rally, come back and figure out your next step. It isn't the end of the world if it doesn't work. Always hope. Always have a plan, and a backup plan.

Hope is all you need and xongratulate yourself for the little things you do manage (sounds idiotic i know!). Good luck with LP please do update!! And if it dosent work back to the drawing board

I wish you the best of luck WishToBeWell. Whatever happens you are welcome here.

Good luck wish, please do also chase up the b12 tests at the same time though

Beautiful posts guys, thank you - and Hippo am all over the B12 like a rash so another thanks for that

And Pancake I promise I will update - how could I not when there are so many suffering and it takes just a few brief words of theirs to become immediately clear that we are in the same boat.

It's 6 sleeps left now and d'you know what? I have a little ball of excitement deep down in my belly, I genuinely could not tell you the last time I felt excitement or anything even approximating it (again, it needs no more words for me to know that you too will know precisely what I mean by that).

So I and thread are going nowhere; we will count the sleeps down together and you can share my gratitude that she knows I will doubtless be hobbling from the pain an outing involves, with limbs unpeeling themselves from the car journey and that I will be appearing there in my onsie To her credit, the latter news didn't even make her skip a beat; I know she has seen worse and has, of course, been that person herself. She speaks our language, the language you just wouldn't know if you weren't a native and I do trust her.

Stunningly, the brisk but kind voice of our linguist at the end of the phone is not the 40 something she sounds like, but is actually 71 Likewise, her activities match her voice more than they do her age.

Hang on in there all of you, hope will only dim if you allow it to

I went to the same practitioner OP. She's a nice person, even if the LP didn't help one person in our group. It's a very peaceful place.

Good luck and do let us know how you get on.

Ch I remember (I think it was you?) you posting that you had done LP and it was a 'waste of sodding £600 or words to that effect?'

So, were you the 'one person' in your group it didn't help? Presumably out of 5-7 of you?

Or did your post mean 'even if the LP didn't help a single person in our group?'

I think there were 5 of us and yes that's right. It didn't help a single one of us sadly. Actually, one woman seemed to get a lot better briefly. She then crashed very badly and is far more ill than she was before she did the LP, which is sad.

I do consider it to have been a huge waste of money and it was hard having my hopes dashed (and then it being suggested I just hadn't done the LP properly). As I've said throughout this thread, proceed with caution. I do sincerely hope it works for you, though

So you remained in touch with the whole group and for over a year (as your mention of the one person getting better and then getting worse suddenly jogged my memory of your prev post where you ref'd her well for a year I think) you were all still in touch? That seems unusual to me or is that maybe typical and I'm just unaware?

If you were all still in touch - and an entire group failing to recover seems so extreme and so wrong to me - did you collectively (or singularly) get in touch for either follow ups to try to correct it or to ask for your money back?

Wish, good luck with the course, given you've decided to do it.

If you get something positive out of it, that's great.

If it's not as much as you hoped, well, you already know that different things seem to work for different people. So while it would be a disappointment, it wouldn't be a personal failure, if you see what I mean.

And I absolutely echo building's words: If it doesn't work, rally, come back and figure out your next step. It isn't the end of the world if it doesn't work.

Wish, every group is different. What happened in our group doesn't necessarily have any bearing on what will happen in yours.

I believe our group stayed in touch for 2-3 years via e-mail. It was a few years ago now so I can't remember how long the person who did get better stayed well for, but she has been very unwell for years now post the LP (she lives in a nearby village so I hear of how she is from time to time). It's extremely sad. I believe her 'recovery' was down to her pushing herself, wanting to believe in the process and running on adrenalin. It wasn't sustainable.

I got in touch with Linda to say it hadn't worked. She kindly saw me for follow up sessions. She did genuinely seem to want to help; as I said, she is nice. They didn't work. I didn't ask for a refund and wish I had but this kind of thing, well you get used to people taking your money and promising a cure and it not working. The LP very much says if you don't recover, YOU aren't doing it right, so why would she have refunded me? She wouldn't have agreed the process was flawed.

Why does it seem strange that my whole group didn't get better? We were all suffering from a serious illness. Is it really a big surprise that waving our arms in the air and going 'I FEEL FANTASTIC' (the crux of the LP as you will soon see) didn't help any of us. There are lots of stats online about how many people recover using the LP and I have many reasons to believe they are bogus. There is no true figure which reports just how many people are cured, but I would guess it's a reasonably small percentage based on how many people I know who've done it and NOT got better.

I'm not sure about other people and refunds. I think another girl became very interested in trying another type of therapy so her attentions shifted to that. Two of the women were glad they did the LP if only because it helped their confidence and they suffered from depression as well as M.E. It is quite empowering.

I really don't want to dash your hopes. I really want you to recover. I just want you to go into this not pinning everything on it so you won't be too devastated if it doesn't work. It would be lovely if it did. As a sufferer, I'm thrilled every time someone escapes this hell.

Good luck OP. Can I suggest that when you do LP you don't revisit this thread.

I mean that in the nicest kindest way. It will hinder you to hear of stories when it hasn't worked.

Whatever you do, do it with faith and belief, without being reckless with your health.

I only know of one person who has done it. It worked for her.

Good luck and best wishes x

Where This is a very beautiful line:

'Whatever you do, do it with faith and belief, without being reckless with your health.'

Second only to: I only know of one person who has done it. It worked for her.

And yes, I hear you and I get what you mean

Thank you for all of your contributions to the thread Where, cannot tell you how much they - and all others from all others too of course - have been and are appreciated x

Four more sleeps

Hey, hope you got my pm. Think there are sometimes glitches when I hit reply on the app, so am never sure!