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

From my experience Fibro/CFS is very variable. I have a friend who was very very bad with it for 2-3 years but although still ill can now work 3 days a week (although not consecutive days) My DH has it and 2 years since diagnosis, 3 years since symptoms he now copes much better than he did the first year or two.

DH went on a pain management course which helped him hugely. It also took a good while to get a good combination of meds for him. Once you have a diagnosis they can mess with your meds which will help.

Search for support groups on facebook. We have a local one who meet each month.

You can do this. Keep going and keep pushing for diagnosis/med changes.

I think he phase three trial is for mirogabalin

I do know two people with CFS who have recovered. Both were ( as many people are I think) misdiagnosed. Both had a very nasty illness that seemed to trigger their symptoms- I personally think both had something along the lines of post viral fatigue or simply that whatever they had was something that really floored them for a long time ( both were ill for about 3-4 years.)
Both quit alcohol entirely, paced themselves, eat really healthily ( no specific plan, you know what heathy looks like I'm sure) and did very mild but regular excercise. Both are pretty much ok although they do get very run down after colds etc.

I often wonder if there are viruses or illnesses we haven't fully characterised yet. I picked up a bug while I was abroad once and it kept coming back every six weeks or so, leaving me bedridden with joint pains and fever. I've no idea what it was but it lasted for about five years. Every time I read anything about fibromyalgia I wonder if a proportion of the cases are virally triggered...

I can't see her mentioned here but Anna Hemmings had CFS. She found a way to manage/treat it and competed post illness regained the world title in kayaking.

www.annahemmings.com/page28.asp

WishToBeWell - the phase 3 drug trial that I was referring to is for Rituximab, it is happening in Norway. They have done the first two phases already.

Yes I know someone who had it from 15 to 34 and is now 80% better

RJ and I are on the same page I think

Being sorely tested by DD not sleeping ever bit still managing to work

My dh has made a very nearly complete recovery. Was very sporty before he got cfs, He was ill for two years, various things helped, change of diet (gluten free, vit d,) graded activity and then exercise) He has returned to competitive sport and full time work but is very careful about rest and recovery. I know of two other people both athletes who have made similar recoveries. I do wonder if this type of cfs which is often brought on by over training is easier to overcome than other cases?

I have CFS/ME. Honestly, I haven't really tried anything. Have had it for about 15 years. I find it goes in phases. There are times when I'm too exhausted to do any housework and there are times when I can manage more, it doesn't last though and goes up and down. The last couple of weeks I've been feeling pretty good, I even woke up feeling good one morning which is unheard of. Today though and DH have been bed shopping and I have been exhausted and feeling rough since 2.30. Was flaked out on the sofa for nearly 4 hours and didn't even have the energy to eat. It sucks as every time I have a good phase, I think 'could this be it!'

Am pinning hopes on the rituximab trial and have donated a small amount to the one they are raising for in this country. Australian doctors have also been reported as possibly being able to develop a blood test as they have found something on the white cells, it ties in the the positive rituximab trials. Feeling hopeful that something better may come along soon! I'm 34, have had it since I was 20 and it has ruined my adult life. I cannot work. Now both DCs are at school I'm desperate to work. No one would employ me though.

My ex DP has recovered. Maybe 90%. Took a long while of doing next to nothing though. And you really have to start at zero activity. I think Oliver James had it and has written about it. Have a google for him.

I have had it since I was 15, very bad stage around 21-23 and gradually got better from then on although I struggled a lot when dc were small. I'd say I'm 80-90% now although I pace myself a lot and am very careful not to push myself beyond my limits. I am very careful about my diet as I find that makes a huge difference so no wheat, minimal dairy/sugar, lots of veg and pulses. No alcohol/caffeine. I had B12 and magnesium injections when I was bad and they made a difference.

My main issues now are feeling cold all the time and stairs, I cannot climb stairs without feeling exhausted. I can walk for miles but not up a flight of stairs.

It is very hard when your symptoms are bad, but don't give up. Try anything and everything to see what makes a difference to you, something will.

Thank you all just so very much, and please stay and keep posting? Its hard to admit and Ive never said out loud yet but i am so so scared

The last time I remember feeling well was in 2006 and in 2007 I was involved in major incident that summer and since then has been stressor after stressor, but Im very type A and so I just kept going and going and going - both physically and emotionally (as in I didn't process any of what was was going on when it was going on and nor could I after as the next huge thing leapt out at me - one DC lifr-threatening illness in '08, in ICU 9 weeks teetering on brink of life and death and 2 other DC to come home to and put a 'mask' on, then '09 '10 horrendeoulsy stresssful divorce, then '12 DM diagnosed w terminal cancer and died feb '13. And thats the short list.

Had few major physical illnesses too as well as the above and all the 'less' (vs teh above) stressy stuff and also assaulted by a doctor He is now already in jail for other offences but case re me is with CPS but if they decide to charge him I have no clue how I will even attend court when I can't even bath myself let alone go to even corner shop.

So tired and all is just such a fucking mess

Thoughts on this please??? I HAVE to be open minded and these people do seem genuinely to have recovered?

video testimonials of lightening process

Yes, 99 per cent recovered - now VSOing merrily in Asia. Had it for 3 years.

Wish I know so many people who have done the LP and got chuff all out of it. Myself included. It's your call if you want to do it but really you're just chucking hundreds of pounds away and having your hopes dashed. There is a lot of pressure when you do the course to say you're doing great (otherwise you're seen as still 'doing' your M.E) so there are lots out there saying how great it is. A woman I did it with had one of these miraculous recoveries. A year on she was worse than ever and bed bound.

The whole thing makes me very angry. It's very cult like and is based on bullshit.

Being open minded when you have M.E is often the start of losing many thousands of pounds. It is a slippery slope. Lots of things promise a cure but there's still thousands of us who are still desperately ill.

Are you a member of Invest in M.E? That's a good place to meet other sufferers.

Sorry to hear that you are feeling so rubbish, op. I caught Lyme Disease from a tick bite. The symptoms I suffered were identical to ME/CFS, indeed CFS was my first 'diagnosis'. As I had an actual visible bite on my arm, I pushed my disbelieving GP for a Lyme blood test and it came back positive. The thing is, many people don't recall being bit, as ticks can be as small as a poppy seed. Also, blood tests will more than likely show negative six weeks after the bite, but it doesn't mean that you don't have Lyme Disease.

The difference between CFS and Lyme Disease is that Lyme is treatable with long term antibiotics. It still sucks as an illness though and I wouldnt wish it on anyone. However, I have my life back, I have worked full time and I'm starting a degree in September.

Dr Burrascano is the leading world expert on this illness and his guidelines for treatment were invaluable to me. These are readily available on the Internet. There is also a private hospital in London which specialises in testing and treating these life destroying illnesses.

You may or may not find this useful, but it is another possible avenue to explore to finding the cause of your illness.

Hi, just thought I would add to the discussion...I had glandular fever approx.
2 1/2 years ago, carried on working and was a LP to 2 small DC. After the initial illness I was a mess- absolutely exhausted, in pain from aching muscles/joints, couldn't think straight, depressed and wondering how on earth I was going to carry on. Blood tests were fine, but saw an auto-immune specialist in the end, who said it was probably CFS after excluding other things like MS/thyroid stuff. I made some real changes to my lifestyle- don't drink, quit smoking, and try to eat a lot more healthily. I was never completely incapacitated by it, but it did make me feel that life was not worth living.
The best thing I did was to accept that while it probably wasn't going to be this bad for ever, it was also possible that I would never be as well as I had been before, and this has proved to be the case. I function at about 70% now, but have to be really careful not to overdo it- a session at the gym can still leave me floored. I do what I am able to do, and don't feel bad about the things I can't manage iyswim. I still get very tired, have sore throats a lot alongside random things like tingling, and parts of my body going 'hot' for a few seconds- when that starts happening I know it's time to physically do as little as I can. Acupuncture is helping me atm, so that may be something to consider. I wish you all the best, I understand how it is when you feel trapped by the sheer relentlessness of it all.

I add this to ME/CFS threads for anyone who hasn't got it already

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Please dont stop posting just because I'm too tired to update properly.

This morning has been especially horrific and I am truly just fucked.

Getting a lot out of thread tho

Thanks Kate. I had thought about that report.

I discussed it with my GP a while ago. We both thought, on reading the criteria, that I might be best filed under CFS/other. I can exercise and don't feel flattened when I finish, but when I kept a diary I do feel extra tired 2 -3 days later. So she filed me under ME

But I appreciate I have a GP who listens, thinks and communicates with me and that she may be out of the ordinary in that respect.

Any exercise often affects me 2 days later. Very weird.

OP, how old are kids?

Building that's a classic sign of M.E - that the payback kicks in 2 days later. I agree, it's extremely strange!

I could explain it to you, but I suspect it might take as long as it did for me to take the degree

It was because of my ME and DDads Metabolic Syndrome that I took so many health and exercise modules. But, in short, everybody experiences joint pain up to 72 hours after exercise - normally called delayed onset muscle soreness or DOMS. In ME the muscle acidosis means the muscles recover 4+ times slower. Added to a lack of ATP and oxygen transport, utilisation, resynthesis - basically every way your body uses/needs oxygen is knackered and every way your body recognises a lack of oxygen works overtime. So you can do less and that less hurts more, for longer.

There used to be a train of thought that suggested very slow, reintroduction to exercise could bypass/fool/overcome this... but that didn't work. I was part of one study, it bloody hurt.

But, for me, I am hoping that I can increase my exercise levels a bit. So I am walking my first 5K next week. I have no hopes of jogging or running it and won't try. And, by next Saturday, I may have decided that 1 is enough... but I am hoping that by not drinking wine and only training once a week or so, I might get by on it.