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

Building the only one left at home is 15 and he has been weekly boarding for the past year due to my not even being able to look after him

Now he can do so much more for himself, he is stopping boarding end of this term but will still need a driver to from sch etc as I can no longer drive (and try as I might, I simply cannot wake up - even with thousands of alrms - in the morning until my boday 'decides' to wake up iykwim).

I am of everyone who posts that 2 days after exercise they get a wallop, not in a nasty way but in I just wish that was me way. Even with medical stool in shower, simply cannot wash hair as arm muscles can't tolerate it. I just want to be well or know at least that one day, somehow, i WILL be well

Time was the big factor.

I was told when I was about 20 that I'd never work full time again ( doctors) - and the job centres answer was low key secretarial work ( no offence to any secretaries but admin really isn't my strong point).

I kind of kept working on a three month timeline in my head - in three months it will be better. The three months kept moving but that was how I approached it. I also was quite bloody minded that when I was "well enough" I refused to talk or think about being ill - I struggled to read, so looked at art and photography books, couldn't handle radio 1 so switched to radio 4, couldn't write so drew with charcoal but essentially tried to do something. The other thing I did which worked for me, but probably against all advice was once a year, I went to a festival where I knew I'd be exhausted for at least two/ three weeks if not longer but did give me a break from being ill. It was a festival which operated 24/7 - my bizarre sleep patterns didn't matter and people just accepts it when I crashed. It was my "normal" and meant I had something to hang onto.

Oddly the absolute worst time was when I hit a plateau - not quite well but not as ill and really struggled at that point.

Getting well - I saw a brilliant psychologist for about three years who put me on to a draconian diet ( for small market town in midlands in the 90s) - no wheat, dairy, sugar, caffeine, alcohol, anything processed which I probably stuck to about 80% time.

I also took a huge amount of supplements - various "oils" - cod liver, primrose, starflower, magnesium, zinc, etc etc and some body builders stuff that helps to reduce lactic acid. And painkillers galore. I did have some Chinese medicine - hideous stuff but certainly improved my hair and skin ( I was either grey or white) but complexion was clear :).

Exercise - I had to learn to "pace" myself which I generally failed at but did get much better. . For a fairly boring reason ( my parents house was split level) I always needed to go up and down stairs which I'm now quite grateful for as it meant my muscles were forced to move and didn't have such a great leap to start getting fit.

I then started ( literally) floating in the local pool - again just to get some movement and then progressed to one length, two lengths etc.

Hope that helps and good luck

The other thing is that for me, I found the support groups terrifying and unhelpful.

I was a student ( pre Internet) and there was a lot of signing up before getting information and feeling that I had to jump through hoops before getting any help.

I went to two groups ( lovely people) but I found them terrifying and very focused on their symptoms and the fact it was a life sentence.

Frankly, if I could get out and was going to pay the price of going out, , I wanted to do something other than focus on being ill which was wrecking my life at the time.

I know that some support groups (for any illness) can be dreary but it's a bit sad seeing you say that. You're saying you could go up and down stairs and float in a pool - many can't even do that. You can see why people would get caught up in focusing on that. It is a very scary illness to suffer from, with the medical profession virtually abandoning you. Glad you are doing better now though.

My experience is that one group I attended was pessimistic and a bit overwhelming. Otherwise I have met hundreds of sufferers through online groups and made many friendships. My friends are so positive and our conversations are usually about things other than our health. They are fantastic people and a huge support to me.

Wish, I am at a similar level to you with the no exercise and struggling to shower. No children, partner or job and I've had to lose my independent recently too. I think the 2 day thing for more is a 2 days post exertion thing more than 2 days post exercise. Exertion covering things like showering.

Yep, been there with the washing hair. And bathing at all. Never mind changing the vile bedsheets I'd be lying in for six weeks.

If I get to that point again, I'll consider having a crew cut to minimise washing. I use a home hairdresser, so it wouldn't need a trip out. Might need to wear a woolly hat, though!

I had my Vit D tested through these people: Cityassays

I was pretty deficient - but I'd been indoors for years so no surprise. Over the counter Vit D tablets sorted it out within six months and I still take them.

It hasn't been a miracle cure, and I was already slowly recovering, so it's hard to pick out what's attributable to the Vit D. But I'm certainly no longer getting the bone pain, and am no longer covered in bruises which take forever to heal, both of which are potentially related.

This thread is sad, there are so many of us suffering what can be perceived as an "invisible illness " and I can relate to so much of it.
I believe mine was triggered through anxiety and stress after a horrific year of school appeals and ds being bullied.
I have suffered from sciatica for 11 years so know how hard pain is and have painkillers etc but this came on me and knocked me for six.
I was extremely house proud to the point that I would clean top to bottom every single day, hair washed every other day etc and then I noticed that any opportunity i had to sleep I would take it. The defining monent for me was when I stumbled across fibromyalgia somewhere and thought " that's me" I tick every box. Doctors were very dismissive of the condition.

Had blood tests done as a process of elimination, all fine.
Severe pain and fatigue is the most horrible thing ever, always clock watching for next dose of tablets and restricted by my condition to even have a night out, can't do it.

Dp tries to understand but doesn't really. I said to him the other day that if we won the lottery then I would still have this, it's not governed by money worries etc, I often think he believes it's in my head :(

I have learnt to listen to my body.
I am not wonderwoman and cannot do everything. I've learnt to ignore the housework when I'm having a flare up and to rest, though strangely I feel guilty for this.
Dc are at school and dp works and I'm having a nap, I wake up and think of all the things I could have done with that time- ridiculous I know.
So whilst I cannot tell you that I've recovered, I've learnt to manage and accept and right now that's good enough for me.
Good luck op

OP, whereabouts are you on this rough scale?

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Please, note that "desk work” includes everyday tasks such as sitting at a table to eat or read.

That's really interesting I would say I am a 50

To give you hope WishToBeWell

Aged 21 - 24 I was 0 - 10. Had met now DH, set up home, got viral illness and just crashed.

aged 24 - 30 I managed to start work again. Office based. I managed Mon morning to Friday afternoon, then slept until Sunday afternoon, when DH would wake me up, throw me into the bath, feed me, put me to bed and wake me up for work again.

aged 30 - 40 I managed the closest I cam to feeling fixed, 80 - 100. I did a degree, had a full job as an fitness instructor and community health advisor, started lecturing: sport, exercise and health. But then was diagnosed with pernicious anaemia...

aged 45 - 50 I was/am 70 - 90, it fluctuates depending on how much exercise/fitness sessions I do, given that I am trying to improve my general cardiovascular fitness a little bit. I gave up lecturing last year, too much stress, and am now running my own business.

It can get better. You can get used to managing it. It does fluctuate. It is different for everybody. These days there is more support, Drs are a bit more aware. Back in the 80s it was pretty much not believed in, I couldn't get any benefits, it just wasn't recognised.

You WILL find your own way through it, I promise.

Chch - at my worst, I was bedridden, could only shower sitting in the shower and letting it pour over me. I went days without brushing my hair or brushing teeth and spent far too many hours on the bathroom floor unable to move. I struggled with light, noise and conversation, couldn't read or write.

This lasted for about 18 months and the only thing I did was see doctor, psychologist and my family.

But this isn't a competition - I was asked what worked for me.

I didn't say the meetings were dreary - I said they terrified me. It was pre- Internet so I didn't have the advantage of going outside the group - and also I wouldn't have been able to use a computer due to the pain of typing/ the light. As it was the only time people met, obviously the focus was on their symptoms and lack of progress. I think there is a massive difference today compared with when I was diagnosed - I had to send a stamped addressed envelope and check to get any info, the group was simply the nearest geographical one and that really was it. There were no forum/ chat rooms etc. If it works for you great. But support groups don't suit everyone - and again, this is what worked for me.

I was incredibly isolated - I became in the first year of uni, lost all my friends and boyfriend and then had to go home to a very rural village while being pretty much bedridden and struggling to understand this strange illness that I had been diagnosed with.

Regarding the pool and stairs - I summarised five years of managing a complex illness that took my life completely away from the point of having successfully recovered.
I wasn't aware I needed to provide a precise timescale of when I started to do stuff - a lot was trial and error with my doctor and psychologist suggesting trying things.

So yes, I floated in a pool and promptly spent the rest of the day in bed when I started - approximately two years in to being ill. And then gradually got better at pacing myself.

Stairs - my parents house was split level with half stairs - so four/ five steps. My bedroom/ bathroom on one level, kitchen on another, living room on another. I spent a lot of time only in my bedroom/ bathroom, a huge amount of time collapsed on the floor in various rooms. I also had the painful kind of ME/CFS so could push through pain - and pay later. Again,
I omitted the precise details but with hindsight, I am able to recognise that having to move my muscles helped when recovering from the illness as I started from a minutely fitter body than having stayed completely bedridden.

Coming back to this thread (yesterday and today have been tiring). That scale is interesting. I'd say I fluctuate between 50 and 60. On a good day I can stand in the kitchen and do cooking and laundry but pay a heavy price for that the next day with pain and exhaustion.

DH is very supportive and does all the heavy housework like vacuuming and carrying washing baskets around, and generally helping me with stuff. He is often more tuned into how I'm feeling than I am. He'll tell me to go and have a rest because I've gone ashen.

It would be interesting to study those who have recovered/improved, as well as those who are sick/get worse. What bookish describes doesn't sound that different to other patients, yet she is better and they are not.

Hello everyone and thank you for still posting, is helping me greatly

It's hard to place myself on that scale as I'm really struggling to concentrate on whats in each number and on what I can/can't do etc.

Am somewhere between 0 and 20, if there was a 15 I think that would probably be it. If I tell you what I do, then can you please tell ME where you think I am on that scale?

I'm not bedridden, but when I'm not in bed I am in the same corner of the sofa not moving. If my sofa was a bed then that means I am bedridden 24/7 iyswim.

I haven't left the house since some point last year. Everything is Tesco'd or Amazon'd in.

I can't seem to read anymore as concentration just shot (threads here are easier than a book tho?) I can type for maybe up to 20 min on a good day. On the day I wrote OP that OP nearly killed me but today is a better day.

I can't do anything for myself but I don't have help either so I use hospital wipes instead of shower or bath (even tho do, v v depressingly, now have old ladies stool for shower). I use dry shampoo, the last time I washed it was just after Christmas (I'm so sorry as I know that is so boaky).

I survive on soft drinks, cans of ginger beer or J20. I have no appetite and food prep nearly imposs. I do UTMOST eat one meal a day though so that I can then take my vitamins (am on everything you could imagine, maybe 25-30 tablets and capsules a day and I think my really bad spell followed a longish period of not eating at all so NO vits at all, so am back to trying v v hard to eat at least once a day but is always a ready meal, i just cannot prepare food).

I try to get lost in series on Netflix etc as when I can do that, the days pass quicker but am not 'in' one now and it's hard to 'get into one' though am trying House of Cards now new season released on Netflix. When able to to, can watch 6-7 hours of telly.

I am nauseaous all the time and just so so bone dead tired that there are no words describe it.

Writing this has been both to try get down what my symptomns are, what I can do, what my 'level' therefore is on the above but also a 'test' to see how much could do right now. And now I do need stop as wrists are hurting too much but I have managed type all of the above, but no, couldn't even begin to do hr of deskwork.

Cant open post and can't drive and sole time been out was for GP visit which needed taxi for.

It's Mothers Day and I miss my 2 elder DC at Uni but could never drive to visit them. Youngest is being very lovely and trying to make today special but my heart breaks for him and guilt is my primary emotion. Ok, now my shoulders have joined wrists in screaming at me to stop so am stopping now. TY all just so much

PS And no, don't think I could face a support group as would be faced with evidence of life long illness and I can't face or accept that and thnk the day I do accept that would be the day I died TBH.

bookishandblondish Sun 06-Mar-16 12:12:06
Chch - at my worst, I was bedridden, could only shower sitting in the shower and letting it pour over me. I went days without brushing my hair or brushing teeth and spent far too many hours on the bathroom floor unable to move. I struggled with light, noise and conversation, couldn't read or write.
This lasted for about 18 months and the only thing I did was see doctor, psychologist and my family.

^^^^^^^^^^

THIS is me if include sofa-ridden with bed-ridden, except for the struggling with light and noise bit.

Is mad, I have not moved bar typing but am now, on top of wrist and shoulder pain, breathless just from exertion of writing. Breathless and 'sighing' breathless for what, bit of typing? Beyond depressing

I suffered chronic fatigue for a year after a viral illness and period of prolonged stress.

I don't think it was ME as I was able to go to work, come home and collapse.

I completely dejunked my life. Gave up wheat and nearly all refined sugar. All dairy except butter and goats cheese. Lots of veggies - I drank fresh beetroot juice daily. Contrary to the deliciously Ella ways, I ate good quality red meat and eggs. But zero wheat. I felt I needed nourished if that makes any sense.

Supplements - magnesium (this is lacking in most multi vits), vitamin D - essential, krill oil, iodine in the form of Sea Greens and Vitamin K (needed if you are supplementing D).

Exercise was gentle walks and yoga. Nothing depleting like running.

I recovered. I still have to pace myself and don't go running but I am 95 per cent there.

Everyone on this thread should get their Vit D checked and TSH levels. Don't be fobbed off.

Wish one thing I would focus on at the moment is your diet. Try to cut back on your fizzy drinks to one or two a day. In your next tesco order, buy some vegetable soup, the Finest ones are good, I think there is a vegetable and lentil which would be great. Try to have one a day even if you split it into a few small meals. Also buy some ready prepared fruit salad, try one a day. Or a porridge pot that you can just microwave. There will be no prep or cooking involved but you will be getting some nutrition at least. Once you can cope with that we can start getting more nutrients into your diet. You can't live on vitamin pills and sugar, that would make anyone feel ill. I know what it's like to have so little energy you'd rather starve than eat, but this is something you need to force yourself to do.

Isabel TY, and I do know it's probably the first area to try and tackle but it's the nausea as much as it is the energy that gets in the way I do really try, and have tried by getting their mango and pineapple mini packs but struggle even with those.

The porridge type pots ironically i think I probably could stomach a bit of but I can't eat gluten or oats so they're out unfortunately.

BTW, your 'Once you can cope with that we can start getting...' made me tear up a bit. Am so glad I made the OP, feel much less isolated

Wish - do you think you might be able to tolerate herbal teas? I have drunk Twinings Lemon and Ginger tea for years now. It's gentle on the stomach and ginger is very settling for nausea. Trainings also do a pure Ginger tea if you don't like lemon. I would try and cut back on the fizzy drinks too. Could you get someone to make you a batch of soups such as lentil and vegetable and freeze lots of portions for you? I can manage to make my own soups and salads and add extra ingredients such as grated ginger to a beetroot and carrot soup or butternut squash and sweet potato. I'm doing my level best to eat nutritionally balanced food to keep as well as possible for my DC who are still primary school age and don't understand what's wrong with me.

Twinings, not Trainings .....

Have you told your GP about the nausea? Stemitil is a prescription med that I have taken for nausea, over the counter try Motilium, I find that good for stomach issues. The tea idea is great, peppermint tea is another good one for nausea.

You might have said already so apologies if I missed it but have you had any counselling, sounds like you have had a very traumatic few years. It might not make you feel better physically but it is really good to off load all the stuff that is whirling around in your head. It can be very freeing, makes it easier to look after your physical problems.

DH was bedridden for a year in his twenties and was diagnosed with ME. Once he recovered enough to leave his bed, he still had lots of peaks and troughs and lost months every year to ME.

Nothing seemed to make any difference but then he went to a dietician and tried an exclusion diet. It caused a massive improvement. He cut out wheat, dairy, red meat and caffeine. In the last five years, he's probably only lost about a week to ME.

He's not cured but he's managing it. If he gets stressed or overdoes it, he still has to go back to bed for a while but it's night and day to where he was.

Am on Ondansetron, Cyclezine, and Metachopromide meds for nausea, so the nausea I am talking about is what I'm left with even after taking that lot.

Do know diet HAS get better, and had been wondering about other things like dairy which are known allergens, esp as all my inflammatory markers are high.

Too tired write much but wanted to tell you that youngest DC (only one home today as others at Uni) gave me a very beautiful Mothers Day

And also, that a nuts thread on here actually had me laughing out loud which is a very rare thing these days I think it's about to be zapped as MNHQ have suspended posting on it but check it out if you have time quickly before it goes as it is seriously mind bendingly funny:)

Cult/Thailand/Man/Chicken Coop/Grapes/Speculem/Ferret and rat walking straps/chicken nappies

Thank you all for still being here

Op the good news today at least that a really exciting new study has been announced in the U.S. I don't think you'd have the energy to read the details but it really might lead the way to a cure. So hang on in there. They are going to take 100 patients (some with M. E) and some control and test them to buggery to find out exactly what is going on in their bodies/brains

Oh and don't know whether I've missed it but have you been on the long running M.E support thread here? It's here