Re: help! mtx knocking me out

October 3, 2005

Speaking of limbs becomming cement.....Guys, I don't know if I can stay on this

methotrexate or not. I've been taking it Saturday nights and every Sunday I am

more and more tired. This Sunday I was literally knocked out cold. The problem

is I can't afford to sleep still for long periods of time--I can't get going

again. My main defense against my syndrome is to keep moving constantly.

Normally I sleep like a rotisserie chicken--I roll around and around all night,

constantly changing positions even in my sleep, because any part of my body that

has pressure put on it for too long hurts for days. If I sleep on my back, then

my lower back and the back of my head feels like I'm being shot with a nailgun

all the time. If I sleep on my side, then the shoulder and hip on that side

hurts..a lot...for days and days. So I constantly move all night. (Needless to

say my husband and I had to get separate beds months ago.) It's why I can't take

any meds that sedate me at all. But this

methotrexate is starting to knock me out worse than any sedative they ever gave

me. I've been on it four weeks now. Can anyone out there tell me if these side

effects will lesson with time? I felt so drugged and I slept on my left side

for about four hours solid--NOT COOL! My arm was completely numb when I woke up

and my shoulder will be paying for it for days, if not weeks. Now I feel like

every step I take I'm walking upstream through a river of thick mud. I haven't

been back to bed since Sunday afternoon--just dozed on the couch and in the lazy

boy--because I can't afford to freeze up again.

Does anyone else have this problem? It's almost as if I'm allergic to rest.

I had to start taking Norco again so I can work--I'm struggling to keep my home

licensed daycare (which I would have lost if it wasn't for help from my teens).

It stinks to have to take Norco because when I do my rheumatologist makes me

feel like a lowlife junkie. I get them from my neurologist, who says that the

stress from untreated pain is much harder on my body than pain pill side

effects. The rheumy informed me that he would NEVER order me a narcotic no

matter how bad it got because they were " habit forming " and he tried to get me

to tell him which one of my bejillion doctors is giving me the Norco, but I

wouldn't tell him. Still, I have to fess up to the rheumy that I'm taking them,

of course, because I'm counting on him to keep me safe by keeping track of all

my meds so I won't fry out my liver or something.

I feel like a naughty child who has to tell his dad he wrecked the car or

something--but I'm not willing to lose my livelihood just to keep my

rheumatologists' respect. I was never a manipulative person before getting sick

but I feel like I'm shoveling all the time to get the kinds of help and

information I need. If I lose my daycare there's no way I could get another

job--you all know what I'm talking about! With the daycare I can sit and do

playdough and talk to the kids, then stretch on the floor with ice packs while

they play all around me or I can sit in a vibrator chair and read to them. The

kids think I'm wonderful because I spend a lot of time on the floor with them

and because I'm very available to just listen all the time. As long as I can

still get out of bed in the morning, it's the perfect job for me. My teen-agers

do any lifting or physical work and I hire someone to clean. I'm not going to

jeopardize it by taking my rheumy's advice to " suck it up " instead of

taking pain pills, especially when other doctors contradict what he says.

As always any advice would be greatly appreciated. What would I do without this

group????Thank you for letting me vent endlessly.

laura

Pat Maloney <prmal@...> wrote:

Hi all,

I am 61 years old and have had fibromyalgia for over twenty years.

It is a horrible 'syndrome' or disease to have, as when I have

flares, I cannot move and my limbs become cement. I have never

tested positive for the RA titer, CRP, or had a high sedimentation

rate, which goes along with RA. I do not have nodules under the

skin; I do also have degenerative arthritis [osteoarthritis] as

well, so most of the time feel crippled anyway.

I can empathize with everyone posting here; have the depression,

overwhelming fatigue, generalized and trigger point pain [8 out of

10 usually]. I have tried narcotics [oxycontin, Vicodin, Duragesic

Patch, and Demerol], all of which made me so goofy I could not

function. I am a Legal Nurse Consultant and work out of my home, so

couldn't even think straight on the pain meds. I now take Ultram,

aspirin and ibuprofen for the pain, use powdered high potency

vitamin/mineral supplement, try and eat right and ride an exercise

bike every day. Even with that, I suffer with fatigue and have been

on SSI for almost 5 years. My LNC work is VERY SLOW and have to try

and get something outside the home through Voc Rehab now. Just two

days a week, as I don't think I can handle more than that. I am

going to tell my Rehab Counselor that and hope I can get something

[don't really care as long as it allows me to sit at work and not

stand for long periods].

I also own some property which I rent out and that has helped me

financially; however, had tenant problems this past summer that

almost benkrupted me. Anxiety was unbelievable and I went into a

horrible flare that lasted four months.

Anyway, I am happy to have found this group and will try and

contribute with giving support. Thanks so much.

Pat Maloney

October 3, 2005