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Has anyone recovered fully from fibromyalgia?

(28 Posts)
shutupandshop Thu 28-Jan-16 13:18:08

Or know someone who has.

I have FM and joint hypermobility syndrome. My consultant and things I've read say it unlikely to ever go away.

I have been reading about a course (lightening process) were people have fully recovered from ME. I'm just wondering if its worth me doing it (financially, time and energy).


ABetaDad1 Thu 28-Jan-16 13:27:05

I have fibromyalgia an am taking amytriptilin which seems to alleviate symptoms. I exercise as much as I can and I watch what I eat and don't drink too much alcohol.

Everything I have read suggests that it can only ever be managed and have never heard of a 'cure' as no one knows what causes it.

I know swimming in hot water helps and no doubt some alternative therapies like reflexology might help alleviate symptoms and pain but a real cure so I can stop taking anti depressants I have no hope of ever finding.

shutupandshop Thu 28-Jan-16 13:32:08

Abeta Is that an anti depressant? I'm on citalapram and sm reluctant to change as it keeps my depressin under control, not sure it does much for my FM.

I was told the same about management. I'm in a catch 22 right now. Too exhausted to exercise or eat really well so carry on getting a bit worse all the time.

Sanchar Thu 28-Jan-16 13:33:07

I have it and a friend has it too. My friends has got loads better as her children have got older but she still has flare ups now and then.
My kids are still young and demanding but I live in hope that I will get better as they grow, it's nowhere near as bad as it was when they were toddlers!

That treatment sounds like bollocks. Drs don't really know what fibro is so how can they find a cure. It's nothing but hope.

Pleasemrstweedie Thu 28-Jan-16 13:41:41

If your fibro is a symptom, as it is in many cases, rather than a condition in itself, then a cure is entirely possible, provided the root cause can be determined.

ABetaDad1 Thu 28-Jan-16 13:54:14

shutup - yes its an anti D. I take a very low dose 30 mg per day but not because I need an anti-D but for its side effects as a pain killer and to help me sleep.

I feel much better after 6 months on it but have bad days still. It also has some unwelcome side effects. Sometimes makes my mouth and eyes dry, causes obtrusive thoughts, my children say they can hear me talking to myself when I am on my own and it has caused patterned vision on a few days. Checks and spots and colours mainly.

shutupandshop Thu 28-Jan-16 13:54:19

Interesting Sanchar. My youngest is 3, also have 14, 11 abd 6 year olds.

stayathomegardener Thu 28-Jan-16 13:55:56

I had Fibro and ME and did the lightening process, PM me if you like.
I certainly don't have either now, wouldn't say I'm 100% but then I'm 12 years older so hard to judge.
Order the Lightening Process book, have a read, make a judgement then.

shutupandshop Thu 28-Jan-16 14:07:56

I'm glad its helping aBeta. Shane about the side effects. How often abd what exercise do you do?

shutupandshop Thu 28-Jan-16 14:10:34

Thanks Stay. Did they clear up as soon as you did the course? Ihave started the book, in the xmas hols when dp did everything but has stalled, same old, no energy!

I'm glad you are better btw.

BrucieTheShark Thu 28-Jan-16 14:19:34

Right, please don't jump on me here, but I've been meaning to say this on a FM thread.

My close relative is a neurologist (MS specialist). We were talking about sleep deprivation and he said that there is a percentage of FM sufferers who, it turns out, either grind their teeth at night or have sleep apnoea. So their sleep cycles are messed up and not their sleep very poor quality, sometimes without them even knowing.

He said that if they will actually believe him and get those things sorted, a lot of the time they recover from FM. He said the problem is they assume the cause can't be that simple and either don't seek treatment, or don't see it through.

Disclaimer: not all cases obviously and I know nothing really. I have no doubt that most have tried sleep solutions etc etc, but just in case.

shutupandshop Thu 28-Jan-16 14:21:03

I thought I
Might have sleep apnoea but gp ruled that out.

shutupandshop Thu 28-Jan-16 14:21:46

Thing is Brucie, how does that explain the aches and pains?

BrucieTheShark Thu 28-Jan-16 14:24:11

Sleep is a mysterious thing apparently and the effects of poor quality sleep still not fully discovered/explained. It's all about going through the sleep cycles properly and obviously teeth grinding and apnoea pull you out of them prematurely, so you don't reach the good stuff <unscientific>

BrucieTheShark Thu 28-Jan-16 14:24:52

How did the GP rule it out? Unless they monitored you overnight, surely it's still possible.

shutupandshop Thu 28-Jan-16 14:40:04

I had to do a questionaire didnt think was relevant will go back to gp. Thanks.

HyacinthBouquetNo1 Thu 28-Jan-16 14:56:27

Interesting thread. I have fibro and seem to have gotten much worse over the last 3 years. I am lucky in that my children are all grown up, I don't know how sufferers manage with a young family! I am just so glad that I had my family when I was very young. I had to give up work 2 years ago as the symptoms were terrible although I was not diagnosed until about 3 months after I left work. I would say I suffer from fibromyalgia syndrome, I started with visual disturbances, dizziness, fatigue and tingling in one side of my face, then the tongue, then creeping flesh and shivering sensations in my scalp and down my back (Gabapentin now keeps these at bay) I also have terribly aching legs in the evening, sore achy arms and shoulders and back. I developed double vision and a numb patch on my leg so had a brain MRI and it has shown numerous high signal areas in the white matter. I had to go on to have a lumbar puncture and visual evoked potential test for MS but these were normal. So at this point in time, no evidence for MS. BUT there is no explanation for the high signal areas and the only explanation for my symptoms is fibromyalgia. Whether this will turn out to be MS in the future, when evidence makes itself plain, is anyone's guess so all I can do is try to plod on and manage the best I can. So I am not sure if this "illness" ever goes away, I wish it would!

daisychicken Thu 28-Jan-16 15:18:44

My Fibro started after a severe bout of Glandular Fever when I was 17. At the time it wasn't diagnosed as Fibro and it took a long time to get any doctor to believe that I was experiencing these symptoms. Eventually after giving up pretty much all active activities and outside of the home activity besides Uni work, about 5 years after starting, the symptoms settled and as far as I thought, gone. Approx 10 years later after after a period of intense emotional and physical stress, the symptoms came back and have not gone away. My GP has gone through my notes and has agreed that I had a remission period. My children were 8 & 6 when the symptoms came back. I take amitryptiline, gabapentin and cocodomol daily along with Tramadol if needed.

As far as I have been able to determine, some people get remission periods, some people manage to get to a point where the symptoms are more manageable and some people have fluctuating but constant symptoms. I don't know why I had a remission period and I don't know what I did to get the remission period so don't know if I can get a remission period again!

shutupandshop Thu 28-Jan-16 15:43:33

Daisychicken, since diagnosis I have been thinking back and think I have had FM, CFS or ME before. I'm the worst I've ever been now. I've just pucked dd3 up from school and am lying on the sofa totally exhausted.

daisychicken Thu 28-Jan-16 19:18:21

Shutupandshop I've talked to various people with a Fibro diagnosis and we seem to fall into 2 groups - those who have never had any symptoms prior to the bout that initiated the diagnosis and those who are sure they've had Fibro since childhood/teen years but didn't realise until they started thinking back. A large number seem to have had a similar sequence of events that I've had and it started with Glandular Fever yet others can pinpoint an accident or a period of stress or illness of some other sort that set the Fibro off. The only similarity seems to be the symptoms we all have.

Everything is exhausting isn't it and with kids we can't just stop (not that I'm saying you can just stop if you don't have kids, it's just different).. My youngest now walks to/from school with friends and I've never been so grateful that he had grown up a bit! How old is your youngest?

shutupandshop Thu 28-Jan-16 19:21:27

Thats interesting Daisy. Do you go to a support group? Hes 3. He goes to nursery 2.5 school days in term time, really I need more so can sleep every day but its the cost. I recently gave in and got a cleaner every other week so thats a help.

HeyYouGetOffMyCloud Thu 28-Jan-16 19:43:05

I had ME/FM and am pretty much fully recovered. I lead a normal, busy life, exercise, work and look after my dc.

I was totally bedridden and unable to do anything (and I mean even make a cup of tea or get down the stairs) for 6 months, 75% bedridden for another 3 but managed tiny amounts of activity (trying to make that damn cuppa) and then went on building up very very slowly.

I did meditation, nutrition, lots and lots and lots of rest, counselling (unexpectedly this helped enormously) and pacing and some significant life changes. A massive part was Gupta Amygdala Retraining (the first few chapters are free on youtube so definitely worth giving it a whirl)

My mum has also had it and is now fully well. I also know of 3 others who have recovered so it's entirely possible to get well.

Its a hideous hideous illness so I send my gentlest hugs. Be kind to yourself. It will take time, but you can get better.

shutupandshop Thu 28-Jan-16 20:04:09

Thanks Hey for giving me hope and

HeyYouGetOffMyCloud Thu 28-Jan-16 20:35:34

No problem shutupandshop. I'd really advise giving Ashok Gupta's programme a go.

It's similar to Lightning Process but much gentler, kinder and less risky. Ashok is a special guy (although frighteningly young - as in it made me feel old!) and his description of how it all works really resonated with me.

Life won't always be like this. My neurologist was absolutely adamant that recovery is the rule ('managing' it forever is the exception). xx

shutupandshop Fri 29-Jan-16 14:14:42

I'll certainly look into that, Heyflowers

I am also hopeful about it getting better as dcs get older as another poster mentioned. Last night I was awake at least 5 times, dd2 was hysterical with leg pains and ds1 was restless. Then of course ds1 was awake at the crack of dawn! hmm

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