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DO YOU KNOW ANYONE WHO HAS RECOVERED FROM FIBRO/CFS/ME? AM DESPERATE

(276 Posts)
WishToBeWell Fri 04-Mar-16 16:05:12

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 sad

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 flowers

HeyMacWey Fri 04-Mar-16 16:10:48

I know one person who 'recovered' but still had to pace themselves carefully after illnesses. They had it severely.

I had had it for the last three years and wouldn't wish it on anyone.
Its a bastard of an illness - leaves you unable to commit to any plans and is incredibly isolating - you feel like you are watching life pass you by.

Has your gp prescribed anything for the pain? Have you been referred to a cfs clinic or pain clinic? Once you get the pain under control it helps massively.

Pacing is the key to managing some quality of life - that and accepting that your life is currently different to the one you thought you'd be living.

HeyMacWey Fri 04-Mar-16 16:12:27

Lots of us on here have it so we know how you feel - you're not alone and you can get through it flowers

lilygirl81 Fri 04-Mar-16 16:12:48

Not me personally, but my sister suffers from CFS and has done for years. She was off work for about 3-4 years, but now works 15 hours a week in a fairly physical job. She definitely isn't 'cured' but it no longer dominates her life.
Split your day into segments with rests. At the moment the segments could be 10 minutes activity with an hour to recover, or however long you can comfortably manage. Have a proper rest, in bed or flat out on the sofa, my sister found that sitting up used too much energy at the start. Gradually, very gradually, build up your activity levels.
It's not something you recover from quickly, but there is hope of a normal life with it (my sister is now about to have twins!).

CFSKate Fri 04-Mar-16 16:32:43

You say you have gone downhill in recent weeks. If you can rest and pace you may improve over the next weeks/months to come. When I am in a worse patch, I will have to wait it out and endure it.

To anyone with ME thinking of suicide, please if possible just try to bear it for another 2/3 years until phase 3 drug trial is complete.

Wagglebees Fri 04-Mar-16 16:35:29

I have me/cfs and know exactly how you feel. I've had to be spoon fed by my DH, unable to wash for days and I've had dark thoughts because I couldn't face a life of feeling as bad as I did. I couldn't even cry because my body didn't have the strength.

But in the last 6 months I've noticed improvement. It's so, so slow and barely noticeable day to day but if I think back to a year ago I can see I've improved a lot. I don't take as long to recover from things. My brain fog is less. I have many hours without pain. I'm able to have days out or go to a cafe for example. I was probably functioning at around 15%, I'd say I'm now about 30-40%. Which I suppose doesn't sound much but it feels amazing.

As an example, this time last year roughly, I planted some flowers in a little window box. It was all I was able to do that day, I had to skip showering and my DH had to make dinner which I ate in bed. It took a week to 'recover' from doing it too. But a year before that I wouldn't have been able to lift the trowel.
Today I planted up the same window box and felt OK afterwards. I made lunch, swept the floor, watched a film and showered. I still have some energy left.

I was told on here by another poster that they had had cfs for 4 years but are now recovered and taking a degree whilst working in a high powered job. That gave me so much hope.

Maybe you won't ever be 100% again and that is really, really hard to take I know, but I do think it's possible for sufferers to get a decent quality of life back. There is hope. flowers

OurBlanche Fri 04-Mar-16 16:35:43

It has been many years since I was where you are now. But I remember the years I was unable to wash my own hair, work, stay awake, work, etc.

I slowly learned to pace myself: exercise, alcohol, foods, all were scrutinised and changed around until I found what worked for me.

I spent 10 years, with CFS, working as an aerobic instructor, couldn't touch a drop of alcohol or I'd sleep for a week, but I could, contrary to all information 'out there', exercise.

Then I was diagnosed with anaemia and oops! the exercise had to stop. I returned to managing to get through a working week, slept form Friday afternoon until Sunday evening, but could slurp down the red wine wine

Now, 30 years after diagnosis, 15 years after the addition of anaemia, I have managed to get my weight down a bit, am trying to increase my exercise levels, very, very slowly, and am finding that I can no longer drink alcohol without wanting to sleep for a week!

So no. Not cured, but yes manageable. Don't let anyone tell you there is a miracle cure or that there is a something you MUST do to make you better. You have to work through what you can, read less commercial info, more medical sites, decide what sounds as though it fits you, how you feel, how you react to your stressors.

Everyone with CFS/ME has different experiences with different stressors, different levels of fatigue and different patterns of relief. You need to learn how you body reacts, changes and behaves over time.

Good luck xx

Wagglebees Fri 04-Mar-16 16:39:20

And because that's a big block of text (sorry) and I know I'd struggle to read it some days, here's a couple of things I find help.

D-ribose powder (1tsp a day)
Magnesium
CoEnzyme q10 (200mg)
B vitamins
Vitamin D (I take 3x5000iu)

The d-ribose and the vitamin d have been the most helpful. They won't cure anything obviously but might be worth a try to see if they help at all.

VertigoNun Fri 04-Mar-16 16:40:31

Yes because they didn't have it and were misdiagnosed.

RJnomore1 Fri 04-Mar-16 16:40:43

I never talk about this but me. I was diagnosed at 17. Had to give up with and was so ill at one point I couldn't wash my hair. I didn't do any therapy as such I just slowly recovered. I'm 40 this year and apart from dh no one else in my life now even knows I was ill.
When I take a virus I still get tireder than most people I have a fair amount of head and shoulder pain but I'm even well enough to compete in weight lifting events. I would say I've never been back to full levels I was before and I run on sugar sometimes definitely but I have a normal life. I never thought I'd get out of my bed again at one point.

And now I will go back to never discussing it again if that's okay.

OurBlanche Fri 04-Mar-16 16:42:32

Oh yes to the Vit D. I used to use a 'day light', especially this time of year, all those dark weeks. I must dig it back out again smile

dotdotdotmustdash Fri 04-Mar-16 16:43:39

I was misdiagnosed with Fibro a few years ago. I didn't believe the diagnosis, despite it coming from a Rheumatologist, a Gp and a Physiotherapist. I did some research into my symptoms (very weak muscles, fatigue and bone pain) and asked for my Vit D levels to be checked. This was done (grudgingly I might add) and came back as 'undetectable'. After about 6 months on supplements I started to feel more normal again.

Quogwinkle Fri 04-Mar-16 16:43:43

I have CFS, and am being investigated for fibromyalgia too. My symptoms are nowhere near as bad as yours, though. I go through phases of total exhaustion and needing to sleep, terrible back pain, neck, shoulder, head, knee, hip and foot pain, but it isn't constant. Some days are better than others. All I can say is that I have some painkillers from the GP to take when it feels bad. She has suggested antidepressants as a pain relief too, and I have been having acupuncture which has helped with pain relief too.

I'm trying a different approach to my diet atm, by eating more fresh and raw foods, vegan-ish (have always been vegetarian). No idea if it will make any difference but will give anything a go.

VertigoNun Fri 04-Mar-16 16:44:04

m.facebook.com/story.php?story_fbid=970356546350892&id=185492778170610

Have a look at PoTSUK, they have NHS research stating a third with CSA really have PoTS. If you have certain types of PoTS you can go back to normal. Many will never go back to normal though.

OurBlanche Fri 04-Mar-16 16:44:17

RJ nobody will mind, and if they do, sod 'em smile

VertigoNun Fri 04-Mar-16 16:44:44

CFS have PoTS.

LBOCS2 Fri 04-Mar-16 16:48:51

I did. I was bed-bound at 15, and I'm 30 now and live a normal life - although I'm still prone to brain fog and sleep disruptions/tiredness delay/insomnia if I don't manage it all properly. It also takes me a long time to recover from 'normal' illness.

I was lucky. I know that. I was lucky to have been diagnosed 15 years ago, I was lucky to have the support I did and I was extremely lucky to only have been really ill for about 3 years.

Wagglebees Fri 04-Mar-16 16:52:39

OurB Oh yes I have one of those too. I'd forgotten about it actually so thanks. smile (we cross posted early on the thread btw. The block of text comment was about my own previous post not yours. stdavids)

ItsAllGoingToBeFine Fri 04-Mar-16 16:52:48

My Dad had ME he is now mostly recovered, though is at risk of relapsing if he isn't mindful. There is hope!

Quogwinkle Fri 04-Mar-16 16:58:31

I've been reading about Ella Woodward's diagnosis and eventual recovery from PoTS. She's the one who writes the Deliciously Ella blog and the two cookery books. I know she's young, still in her 20s but she did seem to have been particularly ill. She claims to have recovered through altering her diet. Anything's worth a shot if you're that ill. I'm reading her books, and using them and other cookery books to pull together a healthy eating plan for myself.

dottycat123 Fri 04-Mar-16 17:03:09

My sister was bed bound for 4 years, couldn't hardly move. Now she is a professional dog walker, walking 6 miles a day. She recovered gradually over a period of 2 years. What helped was following a stone age diet, B12 and magnesium injections ( prescribed by an alternative GP).

Wagglebees Fri 04-Mar-16 17:05:17

I'm trying to think of anything that might be worth a try. Ignore me if I'm talking bollocks. grin

Try to avoid stress as I've found it can cause flare ups. I don't know the science as to why, just going off my own experience. I like listening to asmr videos (on YouTube) as they really relax me.

Routine is important if it's possible. I feel like since my body knows what to expect throughout the day, it's become better at regulating itself. So eat, go to sleep and wake up at the same times. Although I realise that might be impossible at the moment. I take 2 sleepease to help me go to sleep, I wear earplugs and have blackout curtains.

Just know that you're not alone, you're really not and there is always hope. flowers

VertigoNun Fri 04-Mar-16 17:07:41

Ella blogged two days ago she hasn't recovered. Ella won't speak to PoTSUK who are very unhappy with the misinformation Ella puts out there.

VertigoNun Fri 04-Mar-16 17:10:53

deliciouslyella.com/managing-an-illness/

Quogwinkle Fri 04-Mar-16 17:13:07

Vertigo that's interesting. I have to say I was treating it sceptically. A lot of her recipes contain far too much fat from coconut milk, which I think is wrong for a start if you're trying to eat healthily, but I'd like to think that eating sensibly will help. Otherwise what hope is there?

Wonder why she won't speak to PoTSUK? Curious.

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