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 am fully recovered and have been for three years

Little Please please tell me how you got well? Please, am desperate

My daughter had CFS for about a year. She was unable to watch TV, brush her hair, eat, or stay awake for more than a short time. She went to a wonderful doctor (who follows Dr Sarah Myhill's treatment plan for treating mitochondrial dysfunction) who gave her a barrage of tests and prescribed a huge number of supplements and minerals, mostly B vitamins, zinc, Coenzyme Q10, Polyzyme Forte, Vit D, carnitine, probiotics, but also several others.

My daughter recovered slowly and is now completely fine.

clara that is amazing.

Funnily enough, I suscribe to Myhill's web updates and only the other day she released some slides summarising her treatment plan (for free).

clean eating - really clean, vit D and other essential supplements, no graded exercise. Nourishing the body. Reduce stress. Well worth a look!!! She is amazing and the GMC hate her for the reason of her being very alternative. Which seems massively unfair given her success results and that she releases info for free.

When I recovered myself, it was pretty much similar to her technique but she goes much further.

I think my crude summary of her understanding of ME is that is a body which is completely and utterly depleted. Which is why graded exercise won't work.

Graded exercise is really bad for CFS sufferers unless they are already on the mend, I think. Statistically, it is somewhat successful because some people start doing it when their body is starting to recover. We tried it when my daughter was going downhill and it was horrible.

My daughter's treatment involved taking many very specific supplements 4 times a day, eating with great care, filtering water, etc. Our doctor based the treatment on the blood and stool tests she did, and she adjusted the treatment every 6 weeks or so. It took about 3 months to see real improvement (though there was some change from about 6 weeks).

HELP PLEASE - CAN ANYONE HELP PM OR GATHER ALL PPs? Is imposs or me to do but if I do not do utmost try and share this with them then feel will have failed in my duty to fellow sufferers - and 'this' can only describe as most profound day since became ill.

Yest was a c*ntish day of highest order and I was staying away from MN today as am just desroyed but I cannot not share this pp who are ill as feels like am watching an epihany.

Am watching a DVD of an NHS Consultant Paediatrician (so NOT some lentil weaver woo, or someone out for profit) of a large children's 'destination' hospital (he is listed as General Paediatrics, Paediatric High Dependency and Emergency care) where he treats children with CFS, and he is the lead Consultant for Paediatric Intensive and High Dependency Care. He was prev at Great Ormond Street Hospital. THIS IS SOMEONE WITH CREDIBILITY.

Am maybe 1/8th of way through and tho brain is struggling to keep up, the way he is explaining CFS - and thus all its bastard symptoms - feels like the equiv of my having been in a foreign country for past X years when could not understand the language and suddenly stumble across someone who speaks English. He is explaining to me what is happening to me and it makes sense (I cannot over-emphasise enough what a massive understatement that is)

Is explaining SNS and the various other brain centres and how the clash and downwards circular nature of CFS occurs.

It is what is coming up though that is the staggering bit. As not only is he first person I've seen describe PRECISELY what is happening to ME, but in later part of the DVD he will be talking about Lightening Process, working with it and seeing success in some of his patients.

Has also talked about Pacing and GET and why, in his understanding, they do not work for many people but equally he acknowledges they can help some people. IE, he is excluding nothing but simply talking about his knowledge and his cohort of patients and methods he knows/has tried and he is INCLUDING WITHIN THERE The Lightening Process. I repeat, this is an NHS Consultant with some 25 years of being within NHS.

I will be back to write more when both watched more and then ABLE write it, but I cannot NOT do utmost to get everyone who is sick to be aware of what I am seeing with own eyes.

IS THERE ANYONE WHO CAN HERD UP PPs PLEASE?

As right now, that is beyond my v limited capacity yet I know I have to try let them know this as is light years away from those of us looking at other options but with no NHS type of validation. This man is saying LP works for some people. I have spent ££££ in private appts and long inpatient stays to no avail. £600 vs that lot is a fraction of what have spent. If when I finish watching this I think that there is an iota of a chance of recovery via LP - as well as those who have testified here it was what recovered them - then I have nothing to lose bar £600 dent on credit card and potentially everything to gain.

Arms killing from typing and I am still reeling from yesterday but could not live with myself seeing this and NOT sharing it with other who may also be wishing themselves dead rather than this life long sentence it feels we have. I care about everybody who has bothered to post and I cannot be selfish enough to not do utmost try and share this w them as it feels like a fucking epiphany in a sea of darkness.

Wish

Don't worry about individual alerts, Wish.

The thread is automatically on the watch list of everyone who's posted. So we'll all notice your post.

It's kind of you to think of everyone.

It's very validating, isn't it, hearing someone describe your symptoms accurately?

The models he's suggesting are unproven, of course. But I'm really glad you're getting something out of them.

It's so difficult balancing hope (which we all need) with disappointments that are bound to arise when no "therapy" works for everyone.

And please, please, don't wear yourself trying to summarise for us (unless it's helping you get you're own thoughts in order).

You sound really unwell and in pain at the moment - I'd hate for you to get worse.

If you just post the name, those of us interested can follow up for ourselves. Thank you for the thought.

you're your thoughts in order

M.E. ate my spelling ability. True story.

Then report it, shemozzle. You know the rules.

I'm seeing plenty people on a Facebook group who are recipoverying, but they have been misdiagnosed & actually have Pernicious Anaemia & Fibro/CFS etc are symptoms of that. Once the cause is treat with B12 injections, they are improving, some drastically so

It's not always easy to get doctors to listen though & seems GPs too often don't understand PA/B12d. I'm finding out the hard way that this is true. My own GP is so, far refusing treatment as she "doesn't know enough about it" & despite her agreeing that I have this too, I'm still giving to fight for treatment. Many give up & self treat though, so that's always an option too

Rockin, it was thanks to you I got my Vit D sorted. I'm so grateful for that.

Hiya Op, ive been diagnosed with Fibro for the past 2 years after a huge car crash (still in legal proceedings) and a spinal fusion for L5/S1. I have good days and v v bad days not being able to move for pain and wash for days on end, bed bound/comatose in pain/sleeping for hrs on end. I too have DC age 5/8, 8 yr old remembers me when i was 'normal' and breaks my heart when they ask when will i be able to play again? Horrid!
I have a fab GP who will do anything for me and have massive fatigue too/fibro fog.
NHS has not been great so have shelled out privatley for eventual diagnoses etc. Am vit D deficient and taking 40,000iu a day for 14 days atm to bring me up to normal.
I jave a physio (private) who visits me at home 1:week and i have found strapping helps with the pain in my arms and upper back A LOT. I also have a CBT therapist come to me once a week which has made a huge improvement.
Ive recently been put on Duolexetine which is supposed to help not only with the severe depression but pain too. Am also on 29 pills per day and im sick of the shite being put into me. I have NO appetite yet put on weight continusly. Urgh.
Have been recently diagnosed with PTSD which takes many forms.
I really feel for you. I am embarking on finding a qualified nutritionist despite the lack of hunger as i really do think this could help. Is it something you could do too? It may help the nausea!
I was also diagnosed with Kinesiophobia (wasnot even aware) which is a deep rooted fear of movement, you may have this which dosent help when you are not moving. Just slightly shifting position when awake every few mins makes the world of good. You just have to be aware. Re the Homeopathy, i know the views on mumsnet and tbh as far as im concerned what do i have to lose apart from some cash but if you do go down that route dont just choose someone who has doneca bloody 6 week course. Once you can move a bit better hydrotherapy is wonderful or see if there is a local Magnapool which is a magnesium pool you can hire for half hr etc. Where are you in the country? If near me i can make some recomendations east anglia/cambridgeshie/london areas. Much love to you, tis a hard and horrible condition very much 'invisible' to people and so misunderstood.

P.s. my cbt phychologist works in a holistic manner so mind and body as one, opppsed to th clinical psychologist on NHS which i stopped. The holistic approach is much better for me and she stops as soon as she can see im tired or taking notgibg in (i dont have to tell her, she knows!) Get a referral to local MH services. Please the depression and you mentioned a catalyst of events in 2006 which may be PTSD.

V tired but wanted say TY

rockin I wouldn't be surprised if we are in the same FB group as I also have PA. I've mentioned b12 on this thread a couple of times but it doesn't seem to have been noticed. I hope you manage to get treated soon, it's a hard road to recovery even when you are getting the jabs.

Bn struggling with my breathing past 20-30min - is v exagerated like panting/sighingg and struggling - is this a normal part of me? Its scaring me

*of M.E.?

It's a normal sign of b12 deficiency. Breathlessness and feeling like you can't get enough oxygen in even though you can physically breathe normally.

I'm on B12 injections as per ME clinic.

I have a CBT therapist who specialises in CFS and would work by Skype if I needed her to. Am mainly seeing her about other things at the moment but can PM you her details if interested. Obv you can Skype from anywhere.

And yes, this thread pops up on my Threads I'm On and will for all previous posters.

Hippoinahat Mon 14-Mar-16 13:36:09
It's a normal sign of b12 deficiency. Breathlessness and feeling like you can't get enough oxygen in even though you can physically breathe normally.

YY^^^^^^^ Exactly that, you have described it better than I could. Subsided bit now but still there - like air can't gt past diaphragm? Or like belt around that bit stopping air going in.

TY re B12 - am on oral supplements as was low but too weak get re-checked and am doubting the oral ones tho v strong (5000 something per one)

TY.

With pernicious anaemia (which is only one cause of b12 def), you can't absorb b12 taken orally, injections are the only solution. I'd ask your doc to check levels again and see if you can get on jabs.

I know a few people who have recovered, or are certainly doing much better. I am enrolled in a nutrition course which a lot of chronically ill people have turned to though, so I probably know more than most. I know a few people who recovered from fibro, but it turned out their symptoms were actually lyme disease. I have cfs myself, doing a lot better after a lot of life changes but don't know if I'll ever feel 100% better.