General Chat

Hi Liz, I try to drink my 2 litres per day. I feel more thirsty at night, also when I get my cravings for salt. We bought a filter system about 12 years ago and that does the job - the water tastes wonderful compared to the tap stuff. Do a bit of Googling on chelation therapy - there must be a way to get the poison out of your system. The sugar would be bad for you as well. I crave sugar and try to get sugar-free products, but so expensive. I really get stuck into the choccy biscuits. :-(

The neighbours used to tell me a few red wines would fix everything and I should get "stuck in" on a regular basis. Good advice NOT to take.

I was allergic to all my jabs - it runs in my family. My mum wore a medi-alert bracelet and my son nearly died from them. He has the ME/Fibro too. I got allergies after the Rubella vaccine and was off school for many weeks. I have been tested and found to have severe allergy to about 8 on the skin test. Lots of books written about vaccines causing these illnesses. Not anti by any means - just a danger for my family, even my OH.

Skull it comes in big bags 20 kg. here in Oz, would be about 10 lbs in the UK. A couple of cups to a warm bath each day or every second day if you can manage that. I found that did help. We used to get them from the hardware suppliers. I know racehorse trainers swear by it, so my OH just told me.

Kim x

Me too, and it is worse than my ms although some days i cant tell, i take 50mg amytriptilene some times a hundred, gabapenten 600mg a day , metformin for polycystic and im on 100mls of morphine, which means i can do quite a bit, without the morphine as much as i hate it is giving me the reason to carry on, the pain is horendous, crawling the walls is how you feel, but again i have a good standard of life, im unable to work, as noone will employ me lol not that i could do much. i never no what day it is and brain fog is so emmbarresing.

you can be with your best mate and not know her name
i was diagnosed around 6 years i thought i was going mad, i would be sat on the computer watching a old fibrothread crying knowing i had every symptom, at irst they thought i had rhematoid arthritis, its funny julie i was going to do a thread but ive a few going so im really glad you have, i cant emphanise how painfull it is without morphine, i describe the pain, when you been sick the next day you have that ache in your ribs, well that is one of the pains.

fibro is now reconised by DLA so if you havent made a claim then do so, the fatique part i hate i feel useless as oh has damaged his back i hate asking him for stuff, one of the reason we were going into shelterd was because of the size of our house and keeping it clean,

now we do it together and have lots of rests , where as before we would try and do it all at once, last november i had a mini break down the house had got bad as i was having a rough time, with gall stones, my family got involved and set up a plan re house work etc, i already had a stair lift but they got other adaptions like grab rails etc so we stayed put, i had managed a lovely garden which had gone to pot, but this year ive spent 15 mintes every day doing bit by bit and im making a orchard in pots lol, no soil, its only the last 2 years ive felt so poorley when i was first diagnosed i didnt care, i kept on working and going to meets partying, but now i dont drink idont smoke i dont do hows ya father it hurts lol and dont dance.

im having a general anesthetic monday when i wake i hope to be rid of it just being positive, if i got better i would be first at the job center, i do a few hours on a sat but i only sit and take money for couple of charities so u do meet a few others in the same position serving there.

when its time to put charites forward fibro is going to be one, dogs and donkey rescue, there isnt many charites for fibro probably cause we cant be consistent

i dont get down anymore there is far worse than me, and i have a wonderful husband and ive become close with my mum, so family undewrstand, i was researching at one time, as a boy in the next village has aspergers and mum had fibro, my son has aspergers and th reaearch i did do showed a connection, well im going to water my greenhouse ( not included in my 15 min.


sorry to hear you are all suffering it helps to have a good gp, i was using quite a lot of morphine and its reduced alot, but dont ever take that amount without building up to it it could kill you its like heroin you need more and more, im just waiting for a wonder drug.

so i have that gall stones and a poorly smear and a cyst lolol,o but im happy and hoping to get the cyst thing done monday

ps im not being a poor me, its nice to talk with people who actuall understand, its so difficult to describe, so julie narproxen should really help but dont be frightend to keep going back, a lot of us end up on morphine xx :-D :-D

I have suffered with me and fibromyalgia for about fifteen years although it wasn't diagnosed for many years. the painkillers i've tried have all had a very bad effect on me, I ended up like a zombie so now only take them when it's unavoidable. I would rather be in pain that feel like that. I agree with megirl about tap water, I improved quite a bit when we started using bottled water for drinking and cooking.The side effects of fibro include ibs and cfs and of cause the brain fog but I've also become allergic to nuts, alcohol and cats. My consultant says he's finding more people who have fibro are getting various allergies.I have learn't to rest when tired, stay in bed when it gets bad but try to keep active when I'm having a good day.
It really is a horrible illness as thers no outward signs and a lot of people do think you're pretending to be ill, I'm very lucky I've got a very good husband who knows I'm not putting it on unlike the doctor who did my dla medical who said I should pull myself together and get on with it.

Looking back I had symptons at schoolbut not diagnosed til 2006 people on here knew before the diagnosis that I had it just from symptoms.

Now got Fibro, Sjogrens, hyper mobility and a lot of syptons of Lupus but getting that diagnosed is hit and miss depends on blood levels on day you have test done.

My uncle bless him cant remember what medical job he had but he has been looking for ages for htings that will help and always comes up with what doesnt help. Hes just sent me research that been done on doing Tai Chi for it does look like it will improve it a bit and anything is worth a try. Fed up of taking all the meds and not knowing from one day to next if I will be able to do somethign or not.

Hate not being able to do as much as I want with the children ask little one what I do and she will say sleep.
Has meant hubby had to give up work to care for me but I am so lucky to have him.

Wouldnt wish this on anyone.

i can fall asleep anywhare car mums you name it sometimes ive nodded of standing, i would never believed someone ever telling me that but yes ive done it.

we have been to see my old foster woman she became 18 today, she has been out and bought her first pint then another and another, so mum called see if we would have siblings tonite, as we keep in touch, im known as muvver and OH is daddy lol, there no bother, only f/g can be a bit out of control when she has a drink, she has fibro, she has it bad and some days she is bed ridden, its difficult as she is at college.

my 17 yr old has been showing signs for ages , they started her on meds, i feel so bad she has got it she is so young, but looking back i have had this since i was 8.

my cousin has it another has lupus and my nan has polymalgia she is 83 she is 4ft and her and step grandad r ex farmers so she worked hard all her life, she meets my mum on a tuesday in shrewsbury, it keeps her going they have a good natter x

are any of you get anemia apparently its another trait xx

Is that what they used to call fibrocitis years ago?

Fynnin Salts were recommended

It's true about being very painful, I am on 60mg of morphine twice a day but sometimes have to take other painkillers as well. Yes the brain fog is embarrasing when you can't remember your own name when asked, and forget what you wanted to talk about when you ring someone, normally my sister but she knows why now.
It was ages before it was diagnosed as Fibro, I kept thinking the doctor thought I was inventing it.

Caz

yes david, but fm is all over your body not nice, men can get it too but mostly woman.

when i went to the pain management cause there was a young lad only in his 20s, the blokes ridiculed him and called him a sissy, he started a course of antidepressents, no one can comment unless they have had the relentles pain there whers you down, i nearly gave up last november but they alterd my meds and im back on top.

IF YOU HAVE A POO DOCTOR CAN YOU CHANGE TO ANOTHER, YOU COUID PHONE AROUND SOME PRACTISES AND SEE IF ANY OF THE DOCTORS SPECIALISE IN RHEUMATIC DISORDERS , DONT BE FOBBED OFF ITS NOT FAIR XXXX :-D

CAZ my fog is bad now if i use the cooker and oh isnt about i will forget and the smoke alarm tells me dinners ready for the dog, and putting things down and not being able to find stuff .

ive always been good at remember bdays etc usuall facebook reminds me, and being asked my address is a no no, but somedays its fine, i try to be as normal on here as i can, not everyone knows or understands, and just doing a few hours at the stall on a sat i will sleep well over 12 hours it exhausts that much, its so debilitating, i do try and walk my little dogs everyday , its nice to get out in the fresh air, i can only have little breeds as they hurt me when jumping or pressing on my legs.

do you find your body feels like a bruised peach, it hurts to be touched xx :-D

thoughts are with you puss n daughter, good luck for Monday. Thinking of everyone else too, know what it feels like. Hope some of you are having a better day xxx

thankyou megirl, you keep posting too because i know how bhard it is to deal with, hope your day is good too xxxxx

MORNING EVERYONE HOPE THINGS ARNT TO BAD , DO U FIND ANY CHANGE in your condition with the weather eing warmer.

I was thinking about before i was diagnosed and started treatment, turning over in ed felt like all your lims were being ripped from your ody.

do any off you suffer from painfull mouth ulcers, ive one in the same place most of the time, ive just put bonjella on gawd it stings lol xx :-D

I used to be as fit as a buther's dog with the constitution of a peasant.
Then in 1994 while on my bike I got hit by a car that didn't give way.
Several fractures etc later......
Well I guess I'm lucky.

Puss not only do I feel bruised but I do bruise easily, always have a couple at any time and my skin always feels sore to the touch, I have to turn over in stages with rests in between. I try to sleep on my back asitseems easier. Yes I always feel less pain when the warmer weather comes but I think the worst thing is the fog. Only yesterday at hospital I couldn't remember my address and felt so stupid when having to ask oh our address. I just hope it doesn't get any worse.

Caz

i agree caz , and on the phone when a load of garbled rubbish comes out.

the one thing that makes me laugh is people saying write everything down, well yes that easy if you remember it lol ,Ive just actual written admission letter to get from upstairs :-D

how is you ankle caz,

hello david u werent lucky must have been very frightening

Frightening? it happened too quickly.
The fright began when I was told I had 4 pelvic fractures.
And for a long time I felt like my back was broken,plus other injuries.

I'm lucky in that I didn't get killed out right,shunted in front of a lorry or bus.
I'm lucky I wasn't paralysed.
I'm lucky I can walk.

Must be lucky

caz do you get mouth ulcers at all xxx :-D

The worst thing for me is living alone and trying to cope alone....I'm already on DLA because of my other problems but I have to use it to live on, bills etc so I don't have any money for carers!! I have an appointment to see a rheumatologist in May to see if it is fibro..
I now live in a bungalow with a wetroom which is a help as I can't do stairs or get in and out of a bath....Today is not a good day as im in an awful lot of pain....

Jules x

Puss no I don't get mouth ulcers, in fact can't remember ever having one.
Jules, nice to see you joining us but not nice having FM which it most likely is. As you say it is very painful, I was put on morphine for it but it is getting to the stage I need more,, my body must be getting used to it.
When you see the rheumatologist in May you will have to come back and let us know the outcome.

Caz x