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 have you looked into Iodine supplementation here

Wish Have you tried bananas? They're easier to chew than a lot of things and they have some good stuff in them.

I was told today that I should spend a day in my friend's 'mad house' that would 'sort my head out'. Complete with laughing. Nice.

I think having people misunderstand it or not try to understand at all really adds to how hard it is. That's why threads like this are good, they help a lot of people feel less alone. Thank you for asking for help Wish although I'm really sorry you had to.

Oh Waggles I am so so sorry. That is fucking disgraceful Who gifted you that gem? What an utter cunt (sorry, but sometimes it is the only word that suffices. If my asking for help here and this thread has helped you one iota then that makes me even more glad that I started it (& lord knows I was already glad enough that I had so that is really saying something

And your suggestion re bananas is a really good one, I had forgotten that I could sometimes eat half a banana or so, so I will order some with next Tesco order.

Carrie Iodine is probably one of the few things I'm not on, so I will take a look. Thank you for taking the time to do that. And ChCh no I have never seen that before so I will look at it tomm. for all of you for thinking of me. You have no clue how much it means x

Let me share some joy with you lovely lot

DC3 (only one home) disappeared this morning and then came in and told me to close my eyes. I heard lots of rustling and he said, ok, now you can open them (& he was just SO excited, could hear it in his little well, v deep now but YKWIM voice)

When I opened my eyes he had deposited a virtual sackload of Reese's Peanut butter cups on my soft blankee, and in his hands he had a stunning opaque pink glass vase with just a beautiful flower display in them I know his Dad gave him a little bit of money for a token Mothers Day gift but DS very proudly told me he'd been saving for weeks as he wanted 'to give me everything' on Mothers Day

And in his (really really bad!) little handwriting, he had written on the little card that he had obviously got at the florist just the loveliest of messages -

Dear Mummy,
I love you more than words can ever hope to describe. You've always been there for my whole life, whether I wanted advice, a shoulder to cry on, or even just sausage, mash and beans! Even through the worst of times your smile never faltered, your laugh never stopped. You gave me, and the other guys who aren't as awesome as me (he was having a laugh at his big bro's ), absolutely unconditional love and support. For this, I can never thank you enough. Lots of love, H xxx

And then he squeezed me til it hurt and told me he loved me and was just brimming from ear to ear with his own chuffedness at what he had done - was just such a beautiful moment and the little card has barely left my hand all day

I want to be able to drive him to school, I want to be able to go ice skating with him, I want to bake banana bread with him so you see, I really really DO have to get better so we can do all of those things. And that is what I have to believe in as much as I possibly can.

Goodnight you lovely people, and thank you for being here with me x

A friend of mine was very ill, diagnosed with ME when she was young, and has completely recovered.
I went on a gradual decline, then suddenly very ill from nearly 4 years ago - about as ill as you are. I am now a lot better - about 60% normal for my age.
I avoid dairy and antacids, esp omeprazole unless absolutely necessary - I believe they can block absorption of other things
I take: magnesium, CQ10, zinc, selenium, D3, K2, a multivit & mineral, Omega 3, Vit A, C, E
I have been prescribed gabapentin, which I find helps a lot - I can't tolerate amatryptaline, unfortunately.
There are quite a few spoonies on Mumsnet, I'm sure more will come and help.
I second the advice not to do any 'miracle cures' Nothing that involves you paying anyone anything for a special technique or pill is any use (apart from buying ordinary vitamins, etc)
Avoid Graded Exercise Therapy, as it has a bad reputation for making people worse.

Thanks Wish I won't say no to chocolate.

I lived off porridge and bananas for a while. DH made the porridge for me. It's a good comforting food and again easy to chew. If you can get some ready weighed out, instant ones or someone else to make it for you, it might be something you can eat.

Your flowers are lovely btw.

Oh sorry, just seen you can't eat oats. Slowest correction ever but it took a while to re-read the thread. And sleep for me now.

Oh your lovely DS3!

Dear me, I seem to have something in my eye...

Your DS is a star. How wonderful.

Wish...look into the gaps diet.
I think it might help you.
I was dx in 97 - I would say my ME is relapsing/remitting but sadly got a horrid virus atm and they always knock me for six
I was able to go back to work part time and have 2 dc but it's not been easy
I can't do everything I want with them and I'm very tired a lot of the time
I went back to work in Jan after 7 years at home and even though it's only 1.5 hours per day I'm really feeling it

Oh - M.E friendly foods...

If you're really struggling and have help prep wise I think avocado and coconut cream [separately) are good. Nice and soft but lots of good fats which are essential. If your dp can get them prepared in a bowl each morning for you, you only have to dip in when you can.

If he can make some smoothies for you too - he could blend both ingredients into them and add nut butter (can you eat nuts?) and lots of spinach for you to sip at through the day. Get him to add coconut oil to the smoothies for extra calories/good fats. It might be too rich with coconut oil though. I have a friend who lives on crisps - at least potatoes have lots of vitamin C!

Your son did a lovely thing for mother's day. It must be very hard not being able to do things with him - that's part of the reason I haven't had children.

CAN ONE OF YOU HELP ME PLEASE? (sorry for shouting but its imp and I can't do it myself) [flowers

I looked at the thread that ChCh posted above and have gradually waded through it. It's definitely not for me tho as I left it more depressed than when started it. BUT there was one pot towards the end where poster had written substantially recovered via a 'proper' doctor who also engaged other things (not her exact words but best can remember), and she said anyone could PM her for details.

By then I was simply too tired to (I know that sounds just utterly fucking ridiculous - too tired for simple PM, but hey ho is just how it is huh?) but left screen on that page so could do when had energy. But bastard PC shut all my pages down so is lost now and cannot face wading thru pages again (even tho pretty certain its near the end) both due to energy of it and also for my MH as all the talk of brain lesions and 20+ year illnesses more than I can bear right now).

But I still desp want pm that poster so iff anyone has any sparee time and energy (I do know that is a lot to ask) and if they could find it and cut/paste her post and details on here, I would be beside myself with gratitude.

If you can help, please do? Will share a Reese's Peanut cup with you?

V v tired and arms hurting so have stop now but will try post later, and thank you all for being here and still posting and hello to newbies

PS Am going ask for thread to be moved from chat to health. Put it in chat as was just desperate and knew more traffic but don't want it go pfft in x days time.

And YY vis my son I still have something in my eye now

I recovered. I had fibromyalgia and ME diagnosed about eight years ago now. It took a while to get to the stage where doctors would diagnose me! I was bedbound, pretty much, unable to leave the house, I couldn't walk far, I couldn't work, I had to give up uni. There were 11.5 months when I couldn't leave my room because it was upstairs and lived off food that I could have delivered and didn't need to go downstairs to cook.

Eight years on, I am recovered. Until last year, they were listed as "dormant" conditions, but I believe that they are now removed and only show if looking for old conditions (like old health problems or breaks, etc). I now live on my own on the top floor and cope fine, I go for runs every day, I work full-time. I have a social life and a career. I can go dancing and drinking.

I have periods where I feel tired and I do probably recover less quickly than others - I was out on Thursday and Friday nights and I'm still a bit tired but I'm okay enough that I went shopping in the city for a few hours yesterday and I'm at work today, it's just normal tiredness rather than that crippling fatigue.

I wouldn't recommend my way of recovering, really, it was an all or nothing approach. I'm living proof that it happens, though! My immune system is still a bit crap but largely I'm okay, I haven't seen a rheumatologist in a while, I'm not taking regular painkillers (I used to be on morphine every three hours).

Best of luck.

I'll have a look - it was a woman iirc. I've looked her up - she's based on Harley St.

Have you looked at Dr myhill's protocol?

Will look that up now.

OK, looks like HeyMacWey is on it!

Heartening to hear another 'I got better' story anchor

Ok -it's Dr Meuschel who is along the same lines as Dr myhill.

www.thehealthdoctors.co.uk/dr_franziska_meuschel.php

Ok Wish, click this link www.mumsnet.com/Talk/general_health/a2469596-Chronic-Fatigue-Syndrome-ME-Fibromyalgia-for-support#56634930

It will take you straight to the right post on the right thread (it was Claraschu who posted).

You can then hit "Message poster".

Ah, might not have been the Claraschu post you were looking for.

Go for HeyMacWey's link instead?

Imagine being able to go for run every day! That's amazing. If I can get half way to that level of recovery, I'll be incredibly happy. There's some really hopeful stories on here.