General Chat

didnt know gabapentin was one of the helpers,

my neurologist recently said some anti epilepsy meds can help with the head pain too

im worried that once i stop taking the tramadol/tramacet he wants me off im gona get the muscle spasms bak, the duloxetine are meant to replace them,
amitriptyline didnt help me just made me feel like zombie next day

at moment im having terrible nightmares last night woke up crying again, tears running down my face

oh and the runny nose i thought was from too much yawning in the day,
son just asked was i crying cos i was sniffing, lol

The runny nose drives me mad... I can't go anywhere without wads of tissues lol.

Linda, my dad uses some sweetners from superdrug that I think are aspartame free. Can't think of their name off the top of my head and can't get up the energy to go downstairs to the kitchen to look. they're in a white tub with green writing. The splenda is good in things like custard or on cereal but in hot drinks he says it tastes powdery and it can make it foamy or something, but doesn't have much of the same problem with the splenda in tablet form in drinks.

I've just been referred to a pain clinic because I was asking about Progabalin/Lyrica, but apparently it has to first be prescribed by the hospital.

specialist and my boss said lyrica are good,

i dont take sugar in anything anymore, nore sweetners tho i tell you wahts bad is chewing gum, and a lot of sweets contain aspartame and orange squashes

All I can say is, OMG!!!! I have taken sweetners in my drinks for the last 10-12 years, I was refered to my rheumatologist 10-12 years ago! I drank diet coke for many many years, up to 2 litres a day, I was addicted to it, I eventually stopped drinking it and don't touch fizzy drinks of any sort any more.
I have been on many meds for FM including Gabapentin, Amitriptyline, both of which I cannot take, they just don't agree with me, I have been on Pregabolin now for the past 2-3 years, I take 600mg a day and the same with Tramadol topping up with paracetamol if needed.
Recently I have felt much better although every time I use my hands they become numb and tingly with pain in them as well.
I filled in the forms for DLA but was gutted to be turned down, I don't know how ill and how limited my daily life has to be get DLA? I just feel that whoever decides on who's entitled to DLA, needs a kick up the backside and to come and spend a week with me to understand what happens in my daily life.

I've lost all faith in help from the goverment as far as benefits go, how the hell do people diddle benefits and get DLA when they aren't entitled?

Gillie XX

Gillie, I dunno, it makes me mad that people can get benefits so easily when there's nothing wrong with them and then give the genuine people a bad rep so we end up having to jump through hoops to get them.

Did you have a medical for the DLA? I would appeal and get someone at the CAB to help you.

As someone said, you have to fill it in like it's the worst day. And when it asks about needing help treat as though it's asking if you have difficulty with it. The wording is very cunning and a lot of people think that if they don't have someone helping them with something then it doesn't count...even though ideally we would love to have someone help us with it. It can depressing to examine every little thing you struggle with and write it down but that is the only way to get the benefit.

My dad downplayed his, unfortunately the woman filling it in for him was from age concern and didn't know what he was really like. He got mobility but not care I filled it in for him this time, it took me two months as writing really hurts my hands, but I wasn't going to let him miss out this time.

Morning all, can i please ask if anyone gets this.....................my legs and hips were really painful last night also i was burning up but at the same time shivering uncontrolably.
Havnt had hardly any sleep now have a raging thirst and inpain and cold again.
Wendy.xxxxx

Wendy

My hubby often says to me are you ok as I am burning up and he cant touch my skin as its so hot when in fact I feel ok, last night he said it but my feet were freezing. I have even sent a letter to my Rheumatologist about it as he is doing blood tests for something else and didnt know if it was relevant to that or not.
Today house is boiling as have the woodburners on but I am freezing, my hands are sooooooooo cold

Am just off to phone Dr as prescription hasnt arrived and I have no tablets apart from a few cocodamol and my chest is hurting like hell again, just wish I could did a hole and bury myself.


Hope you feel better soon.

Hi Everyone and Summer.

I had my DLA forms filled in by a lady from a disability place in Woking,it took nearly 5 hours to fill the forms in, she wrote everything for me, they are similar to CAB, they do forms for all sorts of disabilities, I can't remember the name of them.
No I didn't have a medical for DLA, I haven't the strength to go and appeal, I am so fed up with always having to fight for everything I need, I am so disillusioned with the way benefits are handed out.
I am probably feeling sorry for myself today as it isn't a good day.
Lifes a bitch at times with no help from the very people we should get help from, don't get me wrong, hubby and lads are good to me, I just feel the medics and government aren't listening.

Gillie XXX

Hi Dawnie, know how you feel.............i am burning up again.xxxxxx

Arghhhhhhhhhhhhhhhhhhhhhhhhhhhh

sorry had to do that , feel so rank today really dont know why I bother some days.

want to answer threads but cant get what I want to say sound right then people will think I am having a go at people.

Anyone got a spare half useful brain I can have cos mine

hi all
my brains useless dawnie
im so tired, im sat here yawning, gotta get sons tea yet, and mine thinking of it,
my sons in work till 8pm as he works after school, dad brings him home,
we been busy in work as theres loads of customers prescriptions and theres work being done on the shop, extention, so weve had all that to put up with too,
i threw more tablets down me neck when i got threw the door,
in my head i feel like im not old but my body feels 80 , hubby offered to get a gun and shoot me last week i said yeh ok thats fine,

the hotness i get, thought it were hotflushes, but i burn up, then last two days i been freezing, not normal for me mind you whats normal these day
sending you all hugs cos like me i think it would help you

Gillie, I can understand that, but if you don't appeal then they just keep getting away with it. And it's something you deserve to receive.

My DLA notification arrived this morning and I've been awarded the same again. High mobility and Low care. The basis of the care component is that I can't cook for myself. I'm hoping to have my own flat soon and there's no way £17 a week is gonna pay for someone to cook me meals. I'll be back to living off pot noodles i think lol. God knows what you have to do to qualify for more than the lower rater of care coz I could sure use more help.

Strange one this but does anyone else suffer with this or am I lookingat something else going wrong with me.

Have had it a few times and this morning was in tears with it and made me feel sick.

Have a really fat belly and belly ache and then when I sit down its as if the pain is going all the way up inside me. COuldnt even do my trousers up this morning.

I am eating plenty of fruit and veg as Dr told me that Co-codamol would make me constipated and also eat activia type yghurts to help me guts.

Dont know if this is part of the FM or something else just know its b;**dy painful.

Am I alone in this one?

Dawnie, it sounds to me like you have irritable bowel syndrome, I found those activia drinks made mine worse, co-codamol do give you constipation as do all painkillers, I also found a lot of fruit and veg skins give me IBS, especially grapes, tomato, apple and cucumber skin, it made my stomach bloat and gave me dreadful cramps, I am careful now in what I eat, it's taken me a while to work out what upset my stomach, I hope you feel better soon.

Gillie XX

PS, IBS is another part of FM, another to add to symptoms, rotten isnt it.

Gillie

I am that bloated look 7 months pregnant.

mainly eat veg off allotment and bananas. Cucumber gives me heartburn so try and avoid that although have been eating tomatoes but not a lot.

Am gonna have to start a diary of when it happens and what I ate just before or day before.

Am gonna send hubby out for a shovel and dig a big hole for myself.

Dawnie i get that too IBS and it is painful, differnt tnings trigger it in different people, one of my bad triggers is processed white bread.

Wendy.xxxx

dawnie
its ibs, by sounds
im on buscopan for that,

its another symptom of FM as the girls say,
some fibre does make it worse but also pain killers,
try some cereal before bed, sometimes that helps
but ask doc for something like buscopan

oh yipee another trip to quacks t get sorted then.

why do you have your week planned and know you can cope with the little you do and then someone throws a spanner in the works and you get so tired cos you havent allowed for the extra bits.

Scouts suddenly sprung rehearsal for concert on us so have had the fetchng and carrying for that and then got the concert tomorrow, really not sure if I will make it as throat is killing me and got a lip full of ulcers that are so painful as well.

Sorry moans over.

d x