General Chat

Puss I personally dont take any medication of that sort but others may do, please dont threaten me either now or anyother time and how I spend my recreation time is my business and mine only and I dont need to be dictated to by you thank you for your concern and lastly please stop with the goading Puss you can spot it mile off ;-)

Jules where does your daughter live, mayby it would be nice to be near her, and a new little grandaughter xxx

im off to make some bracelets pm me if you want i should get an buzz on my phone to say there is a message x xx

hi jules you can always chat to me i know what your going through, i feel so lucky to have most of the pain under controll,

Iis a upheaval to move but you have to think of your life where you are and what your life is like where you are

Persoanly i could not manage without my family as my husband has damaged his spine, my mum and i have become best friends, we didnt get on till about 5 yrs ago, but dad got ill then died we support each other.

now you have a diagnosis peopel will undestand and accdept the way you are, it answers lots of questions over the years of the way you have been suffering when you are finally diagnosed, dont be afraid to ask your gp for help xxxx

I went to see a rhuematologist the other day and she said i defo have fibro..Had to have soem bloodtests today, they tried 3 times but couldn't get any so have to go back at 8.30am tomorrow to see if they can get some then!! I haven't been put on any meds yet as she wants me to see my doc to prescribe some...Not really keen on meds as I have heard that some make you put on weight...I'm heavy enough as it is!!

I don't really have a social life anymore but I guess living on my own doesn't help, I find it hard to make friends..I don't know anyone in my area with a disability that I could share my thoughts with..I am seriously thinking of moving to be near my family as they live over 100miles away..But it is a great upheaval and will be hard on the purse strings...

Jules x

Hi sue, basically with out oromaorgh andm0ther meds its evil, i would feel plugged into the e lectric and would hurt all over which in places would be very tender. i described li like i feel like a bruised peach, memory is poor' im one of the lucky ones as i have a very caring husband and family , sue you can send me a PM tll and i will answer as soon as i can, but i would defitaantly make an appointment at your doctors and ask him his opinon really hope you get sorted and chat any time :-D

Sue so may symptons they diagnose it by pain in trigger points and have to have so many to say yes. Best bet is to look online for symptons but pain is like a burning pain as well, fatigue, headaches, stiffness, numbness get sensitive to touch etc.
List seems endless and not everyone gets them all so really is worth going to a dr but be prepared some still dont think its real.

good luck

now I really must get up as almost lunchtime shows what a night aout does to us

d x

Hello ladies
Can you tell me what the symptoms are for this please?
I don't sleep very well I am in pain from neck down, when anyone taps me on the back I feel my whole body going into a spasm, body feels like it is burning.

Dawn, I don't have asthma either. Adrenals have either had it - can't take big dose meds. as it has side-effects too, or the Sjogren's could be affecting me internally. Doc said I was very dry inside all the way down the digestive tract. These sores in my mouth are canker sores I believe, don't look like ulcers at all.

Puss thank you very much, my hubby is my carer and he has a bad back at the moment. I am in Oz. Have a son and daughter, but they still need caring for :-S Apart from that, most family has passed away. It is time for my iron levels to be checked again. Hate blood tests, my veins are shot. ;-)

Love to all and thinking about you, Kim xx

MeGirl I get breathless just after a little walk and even lying in bed breathing goes and get panic attacks with it, dr gave me an inhaler as he thought asthma but not made a difference.

Puss no change in meds was on gabepentain but put on so much weight pain clinic took me off it as I was getting more and more depressed with way it made me, just have to put up with the restless legs and twitchy arms instead.
Dont use anything on ulcers just put up with it but when they are there do tend to eat more yoghurt and hold it on it for a bit to cool it down.

d x

SORRY TO HEAR YOUR ALL SUFFERING IN ONE WAY OR ANOTHER

IVE TOTALY COME TO TERMS WITH IT NOW, PROBABLY CAUSE IM ON HIGH ANTI Ds , I HAD A LAUGH WITH THE DOC ABOUT IT, BUT SERIOUSLY BEFORE THAT I WASNT IN A GOOD PLACE, ID PLANNED ONCE THE KIDS LEFT HOME I WOULD GO BACK TO COLLEGE AND TRAIN TO BE A NURSE.

ITS OVER THE LAST 2 YEARS ITS REALLY GOT ME, WE STOPPED GOING OUT WITH FRIENDS AT THE WEEKEND, WE JUST COULDNT KEEP UP WHILST IM HAPPY AND CONTENT WITH MY FAMILY AND OH, I DO STRUGGLE , I NOW USE A WALKER MOSTLY, THE MOUTH ULCERS ARE TERRABLE I WAKE SHOUTING AS I KEEP BITING DOWN HARD AT NIGHT, OH SAYS ITS LIKE THE TOUNGE IS SPLIT, IVE NOTICED THERE WORSE AFTER ORANGE JUICE.

ME GIRL, DO YOU HAVE FAMILY AND FRIENDS WHO YOU CAN GET SUPPORT FROM, YOUR VERY WELCOME TO MY EMAIL ADDRESS OR PHONE NUMBER.

DAWNIE WHAT DO YOU USE FOR YOUR ULCERS I TRY ADULT BONJELO, IT WORKS BUT REALLY STINGS, IVE NOTICED MY EYES ARE ALWAYS STICKY AND NEED WIPING THEN THEY FEEL DRY WITH BITS IN THEM.

DAWNIE HAVE YOU CHANGED MEDICATION, WHEN I WAS PUT ON GABAPENTIN, ITS A ANTILEPTIC DRUG BUT REALLY HELPS WITH NERVE PAIN, IT CAUSES YOU TO LOOSE YOUR APPERTE TOO, I MAKE SURE I HAVE FRUIT IN AND YOGURTS

ME, BREATHLESS, YES ITS LIKE THE FATIQUED BIT YOU REALLY NEED TO SIT AND GET YOUR BREATH, BUT ALSO GET YOUR IRON LEVELS CHECKED ITS JUST A SIMPLE BLOOD TEST, CAUSE I HAVE ANEMIA WHICH CAUSES THEM SYMPTONS.

CAZ HOWS YOUR FOOT

I HOPE YOU FEEL BETTER FOR HAVING THIS THREAD UP NOW JULES AT LEAST YOU CAN CHAT TO LIKE MINDED FRIENDS................

IM OFF TO BED XX

:-D

Dawn I get sores in my mouth, more so in winter from Sjogren's. They appear on my tongue among the cracks and making eating and swallowing so hard. I feel sick all day long, but I don't sleep much despite heavy meds. Feel the same, so much I want to do and and nothing in the tank.

Does anyone get breathless? Just walking around the house is causing this more and more these days.

I get mouth ulcers but they put that down to the Sjogrens and one of the reasons they tested for Lupus as thats one of the symptons.


Am at a low ebb at minute all I have dne this week is sleep got up for morning school run and then back to sleep, yesterday got up for swimming lesson with Zo in evening and today got back up for afternoon school run as she wanted to go to library club after but hubby had ot wake me and friend whos a ta said I looked bad. Got no apetite so hubby havng to force me to eat, hes trying his best ot make it look apetising but just cant eat it.

Life is passing me by and Im doing nothing due to no energy and pain.


dx

Yes Caz I will let you know how I get on....

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

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

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

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

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

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 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.