Fibromyalgia- Is There Anyone Else With It ?

[NannyPlumIsMyMum]

Please could you and talk to me if you have fibromyalgia .
I have a DD 6yrs and a DS 3yrs.
My DH works shifts, so does a lot of lates and nights.
I am finding it extemely hard to cope . And wondered if anyone else out there had it too...,

Hand up!

Yup that will be me, i'm 28, and have been diagnosed since i was 19 :( I do however have a wonderful DS 3 and a DH :)

I am quite bad with it (walk with stick), and to top it off i have a neurological disorder similar to MS and freeking tons of other related shit

Some days are a real struggle here too, I can get quite ratty because of it, and feel like i'm taking the piss if i ask for help :(

Hi Lisa thanks for posting !
How do you sleep ?
Do you take anything to help you sleep ?
I'm 35, got diagnosed when I was 22.
My mum and my sister have it too.

I take Amitriptyline to sleep, it does help quite a bit in fairness, though getting comfortable is a bit of an activity!

What are you taking just now?

I also completed a programme of pain management a couple of years ago and it was great.

My DD was diagnosed with this aged 11 and I have since realised I too have suffered with it since my teens. I never really had a name for it my GP when I was a teen said I had Rhuematism and my mum always said "We are an achey family, just put up with it..."

DD goes through phases of being bad with it- the last time was during her mocks (stress seems to make it worse) where she had a blinding headache/ aches/ fogginess for weeks. Needless to say her results were not great!

She takes amitriptyline and this really seems to help especially with the sleep. She sees an osteo regularly (more for deep massage rather than manipulation as she can't really tollerate this.) When she was diagnosed the paediatrician said the most important thing was to keep active and I think the main reason her condition isn't too bad is down to dancing (eight classes a week!) SHe does struggle with this when it flairs up but forces herself to take part and always feels better for it. We notice her condition gets worse in the holidays when she is less active.

I take pregabalin at night.
I was diagnosed first, then my mum and finally my sister.
It's my worst fear that our DD will get it . She is 6 .
It really affects my quality of life as my sleep disturbance is severe .
For pain I have a buprenorphine patch .
For a long while I tried to live along side it , but I have to be honest , despite attending 2 pain clinics it's starting to get the better of me .
My rheumatologist suggested osteo but we can't get it on the nhs , and I just can't afford it at the moment .
Do you think the deep tissue massage helps to iron out the trigger points ?

I do!

I take 900mg of Gabapentin daily, 20mg Amitryptaline for sleep and 30/500mg co-codamol.

I find it very hard to cope. I have help from HomeStart to get me to and from appointments if I can't walk and can't work because of Fibro coupled with Osteoarthritis and bi polar disorder.

I often get angry vecause I am mid twenties and my DC's deserve and expect more from me. Luckily I have a very helpful DH who accomodates me on my very bad days but I rarely have good days anymore. Some says I have to crawl up the stairs and can't fet out of the vath without help, let alone do the nursery run or get my head in the fame to write.

iambored yes, it's so difficult with small DC isn't it ?
Like you I just can't get out of bed some days . There are times when I can't collect my DD from school , or collect my DS from nursery .
This causes all sorts of problems.
My DH is undergoing disciplinary treatment at the moment because of the amount of time he has to take off to look after me and DC.
We have no family near to help us .
We have got the social services coming on Monday, to do an assessment to see if there is any help I can get .

If you can get HomeStart, definitely try. A volunteer will come for a few hours a week too to help you look after the DC while you nap/have a bath/do the housework/generally have time for yourself. They will help you to get to and from appointments, do shopping etc and take care of the children while you go in. I'm not sure how much help is out there, I was only offered HS. I haven't had a volunteer yet but no doubt they'll be lifesavers.

I am really glad you get home support. X
It is a very difficult thing to live with isn't it .
What would say has been the most helpful thing in managing the effects of the fibromyalgia ? HS or something else ?

Yes, me. Have had it 14 years now. There is a thread around here somewhere i'll try to bump up with a lot of advice etc on it.

I've tried every drug avaliable and currently on nortriptyline which is a bit meh.

I work full time have small kids and commute to work (1 hour each way) DP works full time too.

Best advice i can give is to keep going and don't stop. Resting is the worst thing you can do and when you feel like stopping go for a walk. Seriously. Aerobic exercise is the best treatment for Fibromyalgia, coupled with Cognitive Behavioural Therapy it can be knocked to one side.

Oh i also have arthritis in my spine and hypermobility syndrome as well as asthma and various other minor chronic ailments.

Fibromyalgia also goes by the name of 'shit life syndrome' as in it's a physical manifestation of mental stress.

Osteopath is not a good idea to the Poster who is considering it, if you must go down that route go to a chiropractor, although all services you recieve from these you will get through an NHS physiotherapist.

Sleep deprivation is a BIG contributor to flare ups, as is stress. You really do need to get yourself into good sleep habits, go to bed at the same time every night, and wake up at the same time every day. Re educate your body re educate your attitude to it too.

Attack the mental aspects of it and you'll be well on your way to hitting the physical side on the head. Have a look into CBT it really is a great treatment for chronic pain as it helps you deal with stress.

Oh address your diets too. Eat like you have IBS and you'll notice a difference there too.

Basically cut out wheat, dairy and citrus fruit, IBS is a common symptom of Fibro too and stress, again, flares it up :) seriously, request a referal for CBT it is an amazing treatment and will set your DC up a treat if they get the tools to deal with it now :)

Good luck! If i can help further just ask. Keep us posted!

Mine was triggered by ' flu ( proper can't walk or stand up 'flu ).
To be honest , I partly agree with your advice nearly , but pacing has proved to be very beneficial for fibro sufferers.
Those who follow the Boom and Bust way of coping ie , those who carry on and on and on until they collapse, have a worse prognosis and have worse outcomes than those who pace themselves . Ie, having an hour of activity, hour of rest , or a day of activity, then a day of rest .
The thing is I am lousy at pacing . And pacing does not seem to go hand in hand with motherhood or working in a stressful job. I can just see me walking out of a v busy ward saying "I am sorry but I am pacing myself - I need to go and have a rest ".
I do tend to keep going but I can't do it endlessly because then I lose all ability to concentrate/ think, my eyes get so bleary, I can't see and then I suffer a migraine .
I don't subscribe to the shit life theory - they have tested spinal fluid of fibro sufferers and there are raised levels of Substance P.
Fibromyalgia is all about brain biochemistry , that's why whiplash victims offer suffer with it . Because the force of the brain hitting the skull changes the brain biochemistry . Sorry to go off on a tangent , I am doubly thwarted by not only having fibro but I am also a qualified nurse .

Have tried chiropractors - would advise anybody to stay away from them - sorry , nearly I know that conflicts with your advice . As a nurse I have seen people throw good money after bad at them .
It sounds like you must have had a good one - but generally they do not improve the outcomes for fibro suffers.
But again , deep tissue massage is a beneficial treatment for Fibro - NHS are loathe to recommend chiropractors but osteopaths in my belief are much better .
They can also pinpoint the trigger points to give needle therapy which is a brilliant treatment .

To anyone thinking of undertaking CBT - please be aware that there is NO actual research that proves it works for pain .
So please enter it with knowing that it may not work . I see one of the top Fibro Specialists who is very sceptical .
I decided that CBT is not for me ( I actually practice it with patients) .
For those who suffer with sleep disturbance - Melatonin can now be prescribed .

For those who have children on amitriptyline - please speak to a specialist again about this.
Amitriptyline is cardio toxic meaning that with long term use it can have adverse effects on the heart.
I would really advocate trying to wean your DC off this as soon as possible .

Gasbluewithlavenderbeads I can't be sure what triggered it (it is in our family- my grandmother, mother and cousin all suffer it to varying degress) but what seemed to trigger it was a combination of the stress of bullying at school and also an injury where she was concussed (little barstard in her gym class grabbed her collar and swiped her legs from under her causing her to fall back and hit her head.)

She was been on amitriptyline on and off since diagnosis. She is working towards GCSEs so sleep and keeping down the stress is very important so she takes it all the time at the moment. She also finds anti-inflamatories useful- ibrufen mainly- but when it flaired up during her mocks nothing touched the pain so the doctor gave her diflofenic for a short while.

Originally the symptoms seemed to come on over a period of a few months where we seemed to be at the doctors all the time with various pain related ailments. The GP wasn't really sure what was going on, and seemed to feel that the few injuries she had suffered should not be causing her as much pain as she was claiming.

He wasn't sure if it was emotional/teen angst/ hormones related but he sensed it was more than that and sent us to a fantastic paed who after 5 mins of talking to DD was asking me if anyone in the family had fibro. After an examination of the sore spots she had her diagnosis.

I would reiterate to those who find it possible that keeping moving is the best way to go. I am convinced that DD is not debilitated by this condition due to the dancing. The paed said exactly what another poster said- keep moving no matter how crap you feel.

And to the poster who said chiropractic and not osteo- I would disagree. Chiropractic made me much worse- perhaps it depends on the therapist.

Brigit I am so glad your DD got an early diagnosis .

Does anyone have good sleep tips apart from relying on medication? Most nights I'm up until 3 or 4am.

Does anyone else get short term memory loss? Like everything is a little gazy but more than just the usual absent minded forgetfulness.

lamb I have a dreadful short term memory , and I don't sleep at all without meds .

Getting up at 3 and 4 must have a knock on effect on your bipolar ? .