Re: from cynthia

[Guest guest]

Hi ,

I feel so badly for you. Hopefully the Lyrica will kick in with its good

effects soon or I'm sure you will have to stop taking it. It's the same type of

drug as neurontin and if you couldn't take it you may not be able to take this

either. I hope a lot of what you are going through is the med and not the

Fibro, because then that part will go away. Please don't worry about when you

post, your health and well being come first. There are days I just sit in my

recliner and don't move. It's more comfortable to me for most of the time that

the bed or the couch. I like to get it into the " negative gravity " position

with my feet way up high.

I can't answer all of your questions about Fibromyalgia, that's for sure, but

I can tell you what I know from my experience and from what I've read.

Fibromyalgia won't kill you, but it can make you wish it did at times. I know

what you mean about getting a dx and not knowing what to do with it.

Unfortunately this monster is different for everyone who has it, even though

there is a lot of literature and information on line about it there's no place

to go to find out how it will affect you.

Basically, as far as I know, once you have it, you have it. There are a few

people who say they have gone into remission or have been cured, but they are

few and far between.

Lots of people can't work once they have it, if you worked before, but lots of

others do. The pain does seen to wax and wane mostly so you hopefully can

expect easier days than those you are having now. My Fibro definitely changes

severity from day to day. I have to wake up to find out what my day will be

like. While I'm never pain free, I have days when I can do things on a small

scale. There are days when I can walk for exercise and days when I can hardly

stand up. I get the Fibro flu a good bit. I also have a hard time with Fibro

Fog and fatigue. When the pain lets up some, they are generally still around.

I know some people use a cane and I use a scooter if I'm at a Mall or some

other big place, but mostly no I don't think you will be crippled from it,

unless you have a very bad case. I think you will have better days and you will

be up and around again. I certainly hope so.

I also believe your attitude is important and I hope you have supportive

friends or family. I live alone and the isolation is one of my worst enemies.

I do have a positive attitude most of the time though and have things to look

forward to - like my grand children coming over this weekend.

I hope I've made you feel better. Knowledge is power! Sometimes you just

have to fight.

Feel better,

Marti

cj dell wrote:

i am so sorry it took me a day or so to answer. i wasn't ignoring you,

but my body decided it needed to spend more time looking at the ceiling and

screaming in pain...the mind is willing, but the body has it's own

ideas...lol..i can sit up for @ an hr now then have ot lay back down...but

anyways, i am more worried about the ssi for insurance purposes. i really can't

work, anymore, if i stand too long i'm in pain, can't sit too long either,

laying down is a roll to roll event of grand preportions...it tooks what feels

like an army to make myself roll over...the insurance we have has taken almost 4

mts to get approved and now that i have been on the lyrica for the past 4 days,

i am feeling like WOW- WORSE if you can believe that. actaully thought i was

having a heart attack from it, it's the same when i was on nuerotin. but i am

going to give it anohter 2 days and if that doens't work, i'm off of it. ithank

you all for your advice. it feels so lonely and sorted out

having this....on one handi should feel relieved to know what i have, on the

other, i feel like it's a death sentence...is there any place to go to see how

it will go for hte duration? to see how long term this is or how it goes on it's

course? can we die from it? will we be crippled from it. i know i should have

asked, but i was in so much pain the other day when i was at the dr's ...i

forgot to ask when she gave me the dx...and since we live @ a 2 hr drive away,

it's not like i can just make another appt to see her. am thinking i could call

and ask...i am sending giant hugs to you all, and am heading back to bed...i can

hear my pillow calling me...lol...

cynthia

in the middle of the great ice age of western new york!

sharon studley wrote:

I hope this is in support of your need to know what next. I think none of us

know what's next, and I too use to think that, but it doesn't help only adds to

worries, which feeds disease sypmtoms. Everyday can be different, not always bad

and just hold onto that,. Learn to adjust to your body telling u when it has had

enougth, limit your tasks that cause exhaustion and pain. I have just recently

finally had to give in to filing for SSD, although my DR's talked about me doing

it 9 yrs ago, I kept working, but wonder if I had listened to them and slowed

down, with work, I worked appx 60 hrs a week and never said No to more, as I

threw myself into work to get out, forget about my pain etc. and now, I can't do

it anymore. Now hearing that Jeanne and Dave say it takes SEVERAl yrs., worries

me as I was told I have a 120 day wait for answer, and do know most people get

turned down 1st time, I have already talked to a disabilty advocate who says I

am elligible, and if I

get turned down they will go thru the steps to get me approved. I could be

depressed hearing they say a couple yrs!, as I have a husband, but do need to

help with income. But I am not going to dwell on that as I will look positively

and hope I will be on within the yr., as some I have talked to have been and the

disabilty inake worker told me I would be. Keep thoughts positive, not to far

ahead and it

helps................................................................Sharon

Jeanne and Dave wrote: - What do you want

to do? Is working again ever a possibility? If

not, then yes, begin the long drawn-out application for SSD. It will take

several years. Do you have a spouse to support you in the meantime? Take

it one day at a time. Looking to far forward can be scary and depressing.

Jeanne in WI

> so now what? i'm on ultram, flexeril and now lyrica as well as

> methotrexate...now what do i do? do i apply for ssi/ssi-d? i just got

> over a really bad episode last wekk, swear to god, i was begging for

> death, my musclesw felt like they were being stripped off my bones...i

> have no idea what to do now...i'm releived to find out i have a label now,

> but i'm scared,well, poopless....someone give me a direction, advice,

> whatever....

>

> cynthia