I am totally fed up with being ill and not having a life and to add insult to injury i never sleep well because i can't breathe when i sleep ! My doctor is awful and whatever i see her about she just says "oh i don"t know why that's happening, any ideas ?" i can't change doctors as i've already changed and there aren't any good ones in my surgery. My consultant can only be seen when he wants to see me and is booked months in advance. I saw a womam from a local organisation recently amd told her i want counselling and she said she didn't agree with it and would urge me not to have it ! Are there any organisation, doctors etc out there that actually help people, i'm really begining to wonder !
oh chrissy i know excatly what you mean the times iv said just that
the times iv sat and cried with frustration .
iv seen to much neglect by the medical profffesion to have ever put my trust in them .i went the alternative way i still suffer but not with added side effects of the meds .
i get so frustrated at not being able to do stuff that i could do standing on my head a 11/12 years ago .i expect like most suffers i have always beeen a doer if i had nothing needing doing i would make myself a job
like i would do a cupboard sort and rearange wheres as most people would just shut the door and leave it
.now getting up to make a cuppa is an effort i think thats why we suffer so
much depression we are the type of people that dont like to sit still
but because it knackers us so much we dont have the choice
lets face it if we were the sort of people who had just sat around on sofas
watching tv and eating chocolate it wouldnt be a problem
its because we are not this kind of person that makes it so hard to bare
i see my life ticking away year by year and it scares me
i wish i had an answer ,but i dont ,but i do so understand . it so makes me mad.
Yep that's it completely x i wish i didn't have to have the medication but i suffer seizures and migraines and have been almost free (had one fit ,two migraines this year) of them for two years thanks to my meds. I don't even know myself anymore, i have put on 9 stone because i could barely move for two years. Of course doctors cling to that as an answer for everything rather than a side effect. I am losing the weight (lost 3 stone so far) and can't wait till it's gone so i can say "You were saying ? "
oh god well you cant take chances with seizures
how are you managing to loose weight
i so would feel better if i could shift some
i hate the way i look which dosent help
iv tried a couple of diets and have stuck to them but nothing moves
its because i cant get about .that the weights gone on not so much what i eat .i know people think we just sit and eat all day but i also know thats just not the case for fibro suffers its the lack of activity
oh Chrissy, i really feel for you. you sound so much like me presently. exactly that - im sick of being sick! my GP doesnt think its fibromyalgia but had no other offer. i got prescribed a short course of prednisolone on a reducing basis (3 weeks from 5 a day down to one a day) which only gave temp relief and in just three weeks I gained a stone in weight. Nothing else - just the usual take paracetamol, which does take the edge of the pain sometimes but does nothing for all the other associated symptoms, like stiffness, sleep problems, upset stomach, memory issues, and so on. i wake up in dread every morning knowing i'm going to be exhausted, take hours to get moving and then hurt all day. Even drove home to the wrong street recently as my brain just wasn't focussing properly. i've tried 'natural' remedies - by the bucket load, i'm going to meditation classes and when i'm not hurting too bad i go swimming during my lunch break - although not managed that for a couple of weeks as just too painful. i just want this to stop. i've always been healthy, active, eat a very good diet (i'm now vegetarian) and never been overweight until now. i dont actually care what they diagnose or call it, i just want someone in the medical profession to accept i'm telling the truth, that i feel awful and that i need help to stop feeling this bad. why is it so difficult to get both understanding and the right treatment? heavens above, they can replace organs, limbs, eyesight, etc., but they cant treat pain syndrome with anything other than a useless pill that doesnt work!
Yea the seizures were scarey espesh for my hubby. I am following slimming world. I didn't expect to lose much as i thought my diet was healthy but i've realised i comfort ate through boredom. I lost 7 lbs last week !
good for you , iv tried slimming world but theres alot of things like salad
that i cant manage , and they push products with aspartame in so
bad for you .
but if its working for you hun i am really glad but it is a diet for life as soon as you stop the weight goes back on .thats tricky to .all you can do is try
Do not believe a gp's diagnosis they only know a lil bit about everything. Demand to see a Rheumatologist or Neurologist. I've been where you are with my doctor unwilling to do anything so i went for a private consultation with a neuro, my doctor still had to write a referral and what he wrote was awful ! He said i had post natal depression and had convinced myself i had a neuro condition ! Really made me angry but my neuro did some tests amd said i had some abnormalities on examination amd he wanted to do some tests so i had an mri which cleaned out the bank but was clear so he said he wanted to do further tests and he was going to tell my doctor to refer me on the nhs. My doctor actually ignored him for 7 months, until i found out and had him investigated, he reluctantly did the referral, refused to apologise and told me to register with a new doctor. Anyway long story short my new doctor is just as rubbish even though i now have a diagnosis.Don't put up with shoddy treatment you deserve better x
I can't eat salad as it makes me ill also eggs so i found it hard at first but i'm doing great now and we (i say we as i can't do the cooking lol) cook everything from scratch the only thing we don't make is my treat of dairy milk. I have found that this is what is encouraged rather than manufactured rubbish. The weight only goes back on if you fall back into unhealthy eating habits and i don't see that happening as i actually see where i was going wrong and this is how i used to eat when i was healthy.
So glad you're finding slimming world works for you - i went to a couple of meetings but i just couldnt get the hang of keeping a food diary or optimising and syns - it all got too complicated, particularly as i dont eat meat at all. i try now to just watch my calorie intake and make sure i eat whole foods as you've said above, cook from scratch. i dont touch processed or ready made food at all. the steroids doubled my appetite - it was quite frightening always being so hungry. lack of exercise is my downfall now, but it's so hard to motivate myself to do anything physical when it hurts so much - catch 22 situation eh. by the way, not eating salad isnt so bad - a long time ago a nutritionist told me that raw foods are actually not good if you're trying to lose weight, they dont digest as well so upset the body's natural stomach balance. i hate salad but love all vegetables, as long as theyre cooked then i digest them better.
well yes hun that what i said its for life and if you can stick to it you will be fine , i love salads but i get terriable pain wind constipation followed by direeh .i to have to be very careful with eggs , i buy qual eggs and just have a couple in a sandwich to get the taste . seems to be ok
hen eggs constapate me really bad . if i put one in a yorkshire pudding
or a couple in a cake i am ok but eating them whole
it just causes problems.
very good luck and i hope it keeps coming of
I only really go to slimming world to get put and for recipes and tips.Yea the exercise side of things is not easy i have a treadmill and use it with my crutches and do whatever i can manage 30 seconds to 5 mins top. I know what you meam about the increased appetite, when my gabapentin was double all i could think about was food but now i am mindfull of what i've eaten and just reason with myself that it's artificial hunger and i have mamaged to calm it from a massive roar to a quiet nag lol. I would def agree with the nutritionist as it hurts my tum really badly. i find cooked veg much easier atfer all there must be a reason we staryed cooking food on the first place x
thanks for that loxie ,i to was told that about salad i still love them come summer but never touch them . if you think about it . its raw and hard to digest so for people with fibro and simulair conditions who are exhausted all the time would make perfect sense that they would have problems
i love root veg and cabbage and brocli and cauliflower them i can eat
and i live meat lamb being my fav . i couldnt not eat meat unless of course it made me unwell to do so .
read an interesting article about nuts which are luguns seeds and as undigestable to make them more so soak them over night and allow to dry apparently starts the breakdown of them so your body can digest them better .
Isn't that strange, that's exactly how salad and eggs effect me ! It's only been a recent problem say the past few years, before i got ill nothing bothered my stomach. It's pants :-(
* to get out
me to before this fibro i could eat anything i wanted including hard boiled eggs . i am so glad that someone else has the same problem with the stuff i have , not that your suffering of course i dont mean that its just
when ever i mention it to people they roll ther eyse as much to say well you would say that you proberly live on chips .
but its not true i really love salad in the warmer months but not the suffering it causes .i even adore radish . miss them something awful
all this craze for eating semi raw and raw veg been proven its total crap
raw food cant be digested properly and goes thru the system with out us getting the nutrients out of it
liquid goes through the system to quickly hence very little nutrients are gained by the body . best way is to cook veg till its just soft not mushey that way you get the nutrients .
Ha ha yea i know what you meant. Yea ppl look at me complaining i can't walk far and think no wonder it's cause of all that weight but actually the weight is because of the not being able to move not the other way round. It just shows how people judge instantly. I use a wheelchair, you should see the looks i get ! Krissy x
i know i got a print of from doctors the other day and on it said
over weight like i had some contagious disease
like i should ring a bell and shout unclean .
if i had my energy levals up i run round like a whippet in a trace
soon have it of ,
have you noticed thou . the poor sods that get put on steriods by there gp and gain tons of weight is that there fault .
Yea unclean in a wheelchair here argh run ! It all sucks tbf ! When prescribing steroids or other appetite increasing drugs doctors should also refer the patient to a nutritionist or therapist or something like that so they can get help before it's a problem.
One strange thing is I really miss wearing heels, can't balance in them now :-( flats are not my bag lol.
Krissy x