fibromyalgia :(

[lynda66]

In my experience there are two types; There are fibromyalgia sufferers and there are people who have fibromyalgia. The "sufferers" will tell anybody who will listen that they have an illness, they will take any drug they are offered and will use it as an excuse/reason to not do stuff. They are victims and will never get over it (even if they wanted to). Then there are the people with fibromyalgia, they still hurt, feel crap and have all the other associated symptoms BUT it does not define them. They get on with their lives, they don't fill themselves with pills and they don't spend days in bed.
Both types have the same condition, they just have a different approach. The more you do, the higher you tolerences will become, yes the cold wet british weather will cause you pain but the rest of the world does not need to know. You can do anything you put your mind to albeit a little more slowly. You have a diagnosis, it is a bit of an anticlimax to begin with as no-one will say "take two of these and you will be better in the morning". However, you now know that you do not have anything serious or life threatening, it will not get worse.
I don't mean to sound harsh, but it is very easy to become sucked into a cycle of self pity and moaning - don't do it, it doesn't help!!!!
Wake up tomorrow and feel better, make a decision, be someone who has a life and fibromyalgia rather than a victim. You are still the same person, don't let a label ruin anything.

i'm not sure it should have, but this reply has had me bugged, i've been thinking about a lot of things today, and yes i'll still be me, and yes i'll wake up tomorrow and deal with it like i do every day ..... i wrote the post, as there seems to be a wealth of expertise on here, and i thought there may be some hints as to possibly foods to avoid, or eat more of, or anything anyone found useful for helping their symptoms ....... i didn't actually expect to be shot down for being self pitying ...... right now i'm not self pitying, but i'm pretty bloody angry ...... you don't live in my body, do you know what its like to take 2 days to clean the kitchen, all day to mow the lawn 2 days to dig a 6 foot bed for veggies that has no weeds in, just so you can plant a few seeds .....no? well please don't tell me i'm feeling sorry for myself ...... yes maybe i am a bit ..... but thats cos right now my emotions are all over the place ..... or should i be dancing the can can cos i have a diagnosis .... yes i'm going to try the drugs, i take anti depressants cos i suffer from depression,and anxiety, ...... if i can avoid waking up every 2 hours to go to the loo, damned right i'm gonna try the drugs ........ and it's ok saying it will not get worse, it has been getting worse for the last 10 years, which looking back at my medical history is when the consultant thinks this all began ........ i have had 5 operations in the last 10 years for various things that have gone wrong with my body, and each operation should have improved the symptoms i have, but they didn't so i have worried about a lot of things over the years, and today it all came to a head and made sense. ......... but saying it's not going to get worse is a load of crap, 2 years ago, despite other problems, i could walk 10 miles or more, now i struggle to walk up and down the stairs without falling,some days i can't feel my legs at all, my left foot is totally numb, and when my hand twitches when i'm holding a cup of tea, it can be painful when you spill it all over you... anyway i've waffled enough ....... you don't know me, so don't judge me when you have no idea.

[lynda66]

sorry about that, normal service will now be resumed

[SarzWix]

I used to do a lot of ballet dancing and it does affect lots of dancers.

It's not so much that 'it affects a lot of dancers', it's genetic, as is HMS. It's more that you are more bendy/stretchy/supple so are naturally good at things like ballet, gymnastics etc. However any responsible ballet teacher/gym coach these days should be aware of the condition to prevent any injuries from over-stretching. My sons gym teacher knows all about it.
Incidentally, if you are HMS/EDS there's a 50/50 chance your kids will be with a stronger predisposition in girls.


Oh, and Lynda, don't apologise honey. It's sh1t sometimes innit?

[di]

sorry about that, normal service will now be resumed

can't see you've got anything to feel sorry about!!(re the rant not the thread!) don't know a lot about your condition,but doesn't sound nice~I say if you need a rant/advice theres peeps here to listen.~if you don't want to listen or have no constructive advice then there's plenty of other threads!sorry I know i'm a relatively newcomer so don't like to sound off or offend,but don't see theres any need for hurtful responses!
All the best Lynda,don't know you well enough to predict how you'll deal with your diagnosis,but can understand that at present "your"way of dealing with it is sharing it!obviously cant speak for anyone else but i certainly didn't see your thread as self pitying.

[lynda66]

I wouldn't recommend this unless you have a GP's blessing

i would much prefer this, and it's something i want to look into, but my immediate view is try the pills, get some normality if poss, then work on where to go from there, what supplements do you take?

Amitriptyline hope you like dreams i had a course of that in 1995 and the dreams that i had were the most pornagrafic that i ever had doctor did not prescribe again after i told him so good luck jacob marley

lol, i'll probably just have nightmares about giant veg again, my dreams are never as exciting as yours sound

Hey there

i know now't about owt to do with this - but you seem the last person to wallow in self pity. The dreams sound good though.

i'm not wallowing at all, yes i feel a bit miserable, and confuddled, but like always, i just get on with it ...... no bugger else can do it for me lol

I haven't "known" you for very long, but you seem like one of the most upbeat posters here! x

i don't like to be serious for long ...... theres more to life than worrying ..... unless it's worrying over killing cucumbers

sorry lynda about your diagnosis, not good eh, I suffer HMS, and am awaiting more and more hospital appointments and need to see a rhumey, but the docs are sending my to ortho!!!! darn docs!!!

anyway, you sound like me, so i dont think you will let it affect you, well i hope not, but i hope the pills help and that you get some sleep at last xx

i'm sure by tomorrow, i'll be relieved, that at last i know i'm not imagining everything ...... theres been times when i thought i had that thing where you seek medical treatment when theres nothing wrong ...... even though there is always something wrong,(they don't tend to operate for no reason very often) but when you go to the docs with 4 different things, it's a worry, that they may think that.

argh argh I meant you DON'T strike me as being at risk from that!!!

what a dur brain. x

lol i guessed you meant that

Sorry me again... Squashysu, is HMS hypermobility syndrome?

funny coincidence but i went to see rheumatologist today .got diagnosed with sacro iliitis (not sure of spelling) ,I have crohns disease and had a mri for that a few week's ago and it showed a problem in my back.I don't know about you but it's a relief being diagnosed,i know it's not in my head.I feel more frustrated having test after test and they all come back normal when i know there is something wrong.I hope the new medication work's for you and your feeling a bit better soon.

yep exactly how i've been feeling hope you can get sorted too wish medical science would get its act together

Yes it is Rhona. I have it too

Paste a grin on honey, hope the pills work

thanks for that, i'll have a good read, information is good right now, it's much easier to deal with something, when you can understand it

*gets superglue out and finds a grin piccy*

Hi Lynda
Keep your chin up

the doc said to go swimming today, i said i cant swim, he said ok don't then we don't wanna drown you .... wow a whole 6 hours that would be bliss lol ......haven't had 6 hours sleep in a night since about 1990 lol .... i wish i knew how bad the worst it's gonna be will be, cos i've been steadily getting worse for ages, then when i know it won't get any worse it may be easier *sticks pole to shoes and sticks other end under chin*

Blimey - there's a lot of it about isn't there?! I was diagnosed with EDS a few years ago when I dislocated my shoulder. I used to do a lot of ballet dancing and it does affect lots of dancers. .

i used to dance and was a gymnast till i was 15, I also ran and played hockey representing the county, and ride horses and compete in show jumping competitions, this is probably payback for all the hassle i put my body through, and all the bones i broke

I do ballet dancing ( and tap and jazz ) My mum has hypermoblility so chances are i have it to. My gran has fibromalgia and i think mum has already mentioned it

Keep your chin up lynda
Stacey

fingers crossed it skips your generation xx

Chances are you'll be a good ballet dancer then Stacey! My osteo guy was resident with a well known company and he gave me some solace by saying that many soloists get that bit further by having HMS/EDS! Hijacked the thread a bit!

hijack away, it's kinda good to know i'm not the only one, though it would be better if everyone was healthy ...... and happy

but these things keep the world going round and doctors in jobs

[tootles]

Lynda,
I am so very sorry if I upset you, it was the last thing I wanted to do, I did, however, get a bit carried away. I was diagnosed 3 years ago after nearly 10 years of symptoms and I do know how you feel.

[Catrina]

I was diagnosed with fibro last September. I had been going to the doc's for over a year complaining of pains down the top of my arms and in the night pain in my left knee which woke me up. Thn my feet started to get very painful so I could hardly walk. Eventually she "guessed" that I probably had Fibro. No tests just listening to me the last time and saying I could not sleep and the tiredness so she gave me amytriptaline but I would not take it. I already take something for irritable bowel and a hiatus hernia so I did not want anything else.

Mine got worse through last winter and eventually in January I started Pilates and my teacher suggested I had Bowen Tecnique treatment.

I have not looked back since. I had to have six treatments before I started to feel better and the pain is now almost gone. I had a top up treatment just before I went on holiday last week as mine gets worse with stress and my brother in law died two weeks ago and I could feel it coming on again. I had an almost pain free week.

It is very gentle and is carried out over your light clothing and it is manipulation of your muscels and ligaments. I swear by it.

The only thing it has not helped is my feet. I have (everything has a name these days ending with algia which I believe means pain) metatarsalgia. My big toe joint is twice the size it should be and I am not supposed to walk without shoes and this makes it worse. Nothing seems to help the pain and as I do a lot of walking I wear very strong shoes all the time which helps to support my feet.

I take glucosamine and condroitin every day. I dont know if this helps or not but I know when I have missed it.

I just know not to overdo it. You will suffer more if you overdo things. Keep walking in the fresh air and eating sensibly and try not to let it get you down as this will make things worse.

Do see if you can find a Bowen Practitioner and try it. They say that they have a very good result with fibro.

[jackie j]

Take it easy lynda we are all here to support you if you need to rant / let off steam whatever. Having looked after my sister for 18 months before she died of cancer I know how hard things can get when you and your family are going through a bad time.
Look after yourself and I wish I lived nearer so I could help you.
Hugs

[everdream78]

I've been diagnosed for about 6 years now but I've probably had FMS and HMS since I was about 5. I, too, was a gymnast and dancer for many years!

I always remember my pain management nurse telling me about DADA - it's the stages you go through when newly diagnosed with something and she was right coz I went through it ...

Denial - this can't be happening to me, not me surely
Anger - why is this happening to me?
Depression - poor me, poor me
Acceptance - I'm not going to let this stop me!!!!

Homeopathy worked for me - I tried all sorts of "conventional" drugs, amitriptaline, Naproxen, Diclofenac, epilepsy drugs, nothing worked. Eventually gave up and went the "alternative" route (I put alternative in speech marks as to me it's not alternative! lol) FMS can sometimes start after a trauma to the body, car accident etc. Mine was triggered by a really bad fall but like I said it's probably been lurking for years. My homeopath started me on arnica, as it brings out the "bruising" that the body stores away. Haven't looked back since.

You will have to rediscover how to do things, relearn how to live your life, maybe even buy new pots and pans, cutlery etc to help you cope. It's not so bad really - at least you get to go shopping for the new stuff! lol

The only thing that really bugs me is the fog - you know where you forget the silliest words etc. I'm so glad they brought in chip and pin coz I was a b*gger for forgetting my signature! How dodgy did that look in Tescos! lol

Do not let it stop you doing anything, accept that you will have off days, accept that other people who haven't got it won't understand all the time and live your life!!!

It's just a part of who I am, the same as having blue eyes and a big butt!

[TonyF]

Jenny has fibromyalgia which was so bad when we were in the UK (like you, took years to diagnose) she was actuallky pensioned off early by the University at which she worked.

Since moving to France, things have changed completely for her. The lack of stress helps, being able to rest when she needs to, sunshine, not travelling for two hours plus every day into polluted central London, all seems to have helped.

As for the amitryptaline, discuss it with your GP again - it's very addictive and can make things worse rather than better - been there, done that!!

[ailsasyl]

Hi Lynda

RE your comment about foods recommended. Mum swears by having a bannana before bed as this aids sleep also heard recently about goja berries being good but can't remember why?? will ask mum again She also switched to herbal teas to cut out caffine. Avoids Dairy milk choc as this seems to keep her awake and give her headaches.
As mentioned by someone else changing pots/pans etc to light weight is a good and the kettle I don't how many we went through in the shops to find one easier to lift. You also might want to re-organise the kitchen mums done this slowly making sure that things she uses every day are on lower shelves of high cupboards and higher shelves of the bottom units as lifting heavy things is harder for her. As you've gathered from everyone on here it effects everyone differently. Mum has adapted over the years she still does most things herself including her garden a little at a time. If theres heavier work to do then myself or my brother are asked. For example she knew that the wheelie bin was going to be to heavy to move without her being in pain later so when I was down she made sure she got to take it through. Shopping bags is another she has learned to pack these so there not too heavy if I pack it its usually to heavy for not that she can't lift it but that she knows she'd pay for it in pain later. Hope this is of some help to you. If I think of any more foods I'll let you know and don't hesitate to ask with any questions you can PM me if you wish and I'll do what i can to help

[zazen999]

i'm not wallowing at all, yes i feel a bit miserable, and confuddled, but like always, i just get on with it ...... no bugger else can do it for me lol

Hi there.

My post was more a response to the other post [which you responded to a bit later on], meaning that I can't imagine wallowing to be occurring in your house at all!

Looks like you've got some good people on here anyway - with a wealth of info and help.

Hope you are feeling good today.