General Chat

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

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

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

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

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

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

Is that what they used to call fibrocitis years ago?

Fynnin Salts were recommended

are any of you get anemia apparently its another trait xx

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

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 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.

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

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

Hi all

only just paid up for membership, decided after 10 years of not being able to work i should at least get the family history sorted out for everyone!

I had my first look at the boards and this thread grabbed me. Diagnosed with (severe) M.E. for 10 yrs since collapsing but had it for 24/5 yrs since early teens and BCG jab. Although i have the worst docs going so no help from them (despite carers as i also live alone!)

Liz mentioned aspartame, when i was good enough to notice changes i always found MSG's were very bad and led to a very significant loss of energy.

MEgirl - any instructions for the epsom salts bath (quantities etc)? i heard my rugby teams players use it for deep muscle relief and skin detox so got some last week but the only instructions on it are for swallowing it!

My o.h.'s son called me lazy once, he doesn't now and is starting to realise how things are but it took him a long time and his dad didn't stick up for me either, which made me more angry.

I still think the aspartame is what set my fm off, I had a kidney stone and was told to drink more to flush it through, it was the size of a grain of rice apparently. I don't like tap water so was buying those bottles of fizzy fruit flavoured water from the supermarket and drinking one litre bottle a day.

I stopped when I started feeling so tired etc and was diagnosed with fm, and realised aspartame was in the fizzy water. Now I try hard to avoid having anything with it in but I think it's too late, the damage is done.

Lizx

Same here and then didn't get out of bed until well after midday. Can you get some sort of home care via your doctor?? Just to come in and do a few jobs for you or shopping? Church groups or the scouts to do some outside maintenance for a donation. I too went through the stage of being called a malingerer or lazy. They can at least see the condition I am in, so they don't say these things any more.

Kim xox

Still didnt have a very good night last night and am exhausted today...The worst thing is living on your own and having no-one to help you...But on the other hand at least I don't have my husband moaning at me and calling me lazy anymore...

Jules x

Hi Liz,

I experienced the ME symptoms first, swollen glands, headaches and then totally collapsed had to go to hospital for 11 days. The ME has brought on 5 autoimmune diseases which are worse than anything else. I use the genealogy and interacting on fb to keep me sane. The fm came next and my sleep patterns went from being bombed out to no sleep at all. Yes, like you I would give anything for natural refreshing sleep. I also had some special blood tests that showed I had various viruses in my brain. They cost a fortune, but you try anything I guess :-S Plus I was bitten by mozzies one night at a restaurant, must have had about 30 bites. I was found to have active Ross River Fever - another cause of pain, but it isn't active now. My son also has ME and fibromyalgia. He is in better shape than me, thank goodness.

Lol, I put the Parliamentary Question Time on and that usually puts me out for a couple of hours :-D

I did read they did some testing on pilots a few years back using aspartame and it showed a massive deterioration in reaction times and concentration, so it definitely would make brain fog a lot worse - not sure about pain levels.

Would just love a pain free, symptom free life, no money can buy that!!!!!

Cheers, Kim xx

Meant to say I did nudge up a couple of threads but can't find the old long one that lots of people posted on. They are now on page 4 or thereabouts.

MEgirl, I was told at the Chronic Fatigue Clinic at the hospital that I didn't have ME but the fm could become ME if I was unlucky. At that stage they said it had just become CFS

I sometimes struggle for a word but usually can manage it eventually, I read a lot and do word puzzles to keep my brain going. The pain and the lack of sleep is what I hate about my fm and cfs, I would love to go to bed and wake up feeling refreshed but even on holiday when I keep more normal hours, it still doesn't happen. I find I nod off a lot during the evening too altho I think that's because we have the gas fire on, no central heating here in o.h.'s house which means my osteoarthritis in my knees and ankles plays up a lot as well as the other aches and pains of fm.

I wish there could be more work done on these illnesses and the corelation of them to each other. I would also like to find out more about aspartame and whether it causes fm as it's so widely used in lots of foods and drinks in the UK despite being banned in the U.S.A.

Lizx

Hi Jules,

I've had it now for nearly 17 years along with ME. They say you lose 18% of your IQ with it. The brain fog is terrible, but I try to take fish oils for that. I have been known to peel a banana and go to eat the skin whilst putting the fruit in the bin :-S My short term memory is badly affected. I take lots of magnesium (more than normal dose).

If you can soak in an Epsom Salt bath, that helps. I can't do that anymore as baths exhaust me. My husband only works part-time and is my carer and I am a very poor sleeper too - lots of relaxants and pills before I attempt to go to bed.

I don't own a mobile phone and couldn't grasp how to use one and simple maths is impossible.

Wishing you well and lots of gentle hugs xx AND CLEAR THINKING (I WISH).