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Old 06-26-2012, 07:10 AM   #1
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okay i could use some input please, giggle.

hi all,
life has changed a bit in this past year. i am now taking rx meds for pain and muscles relaxers. i could use some tips on how to function in this haze? i cannot keep my days straight. i sure don't feel like me on them. i feel like a fuzzy, blurry clone of me. giggle.
i know the immunosuppressants are also affecting me, i feel it. they make me feel yucky mostly. that i can do.
i write everything down in my brain, but now am forgetting to look or transposing days and well, doing some needless driving and having a good laugh at the end of my journey. great drives tho.
i quit driving for 2 weeks when i started on methadone. amazed i said yes but glad i did. it made me so loopy for the first week, then my body adapted to it, not so sure about my brain tho. giggle.
i feel confused most of the time, not anything new but different from the confusion of fibro.
one thing i do notice is the meds do nothing to alter fibro's discomforts. hey, one can wish right? giggle.
thanks all for your precious time.
peace,
bluelakelady

 
Old 06-26-2012, 03:15 PM   #2
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Re: okay i could use some input please, giggle.

I wish I had some advice. My memory is slowly getting worse as time goes on and I am positive it isn't the meds. I am just taking the main 2 meds. I can't do muscle relaxers or narcotics either.

Hugs to you and hope your brain figures itself out soon

 
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Old 06-26-2012, 06:55 PM   #3
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Re: okay i could use some input please, giggle.

I dont' have any good answers either, but wanted you to know I am thinking of you. I literally feel your pain. I dont take anything, but want to so badly, but am afraid of the side effects and them not working anyway. I hope you get relief soon.

 
Old 06-27-2012, 06:09 AM   #4
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Re: okay i could use some input please, giggle.

thank you ladies,
sorta thought this was a do by myself, giggle. worth asking tho. thanks to all who took a moment to read. no worries, i will get a balance of some sort in place soon. giggle.
peace
blue

 
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Old 06-27-2012, 11:07 AM   #5
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Re: okay i could use some input please, giggle.

hey sis! sorry you have to adjust to a new set of drugs, within time your body may re-regulate and you'll think a little clearer. Maybe a switch in muscle relaxers may help clear some of the fuzz.

Write everything down on paper instead of your brain. Be sure to put the paper where you are sure to read it or that'll do no good either.

I'll send you some of my less fuzzy energy. Can't send it on a gentle breeze tho because the wind doesn't blow westward too often.

 
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Old 06-27-2012, 03:03 PM   #6
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Re: okay i could use some input please, giggle.

hi sis,
i do write it all down. in a book i lovingly call my brain. giggle. only take the soma when i am not leaving home. stuff knocks me out for 5 to 6 hours. tho i do feel pretty good the evenings after i sleep all day. giggle. the baclofen tho does work well for me without messing my head up at all.
thanks for the energy sis. the breeze blows the way love goes so i know i will get it. maybe that's why today is so together so far? giggle. i betcha it is.
i think i am mentally fighting this reality and that so does not help. giggle. decided today to take a few days off the plaquenil AND have a good, productive, fun weekend puttering in the gardens and playing with this one silly hummer who loves to just hover and stare into my eyes about 8 inches from my face.
i think if i take breaks and see the results of feeling better it will help my mind be okay with feeling so yuckie when i am on all this stuff. i'm still not taking enough according to the doc, but it's all i can handle and some is better than none.
nap time. came on to buy a mini blender for my protien shakes. new stuff does not mix with a spoon and it's yucky drinking dry lumps.
peace,
blue

Last edited by bluelakelady; 06-27-2012 at 03:05 PM. Reason: edit wording

 
Old 06-27-2012, 03:45 PM   #7
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Re: okay i could use some input please, giggle.

Sis, I know how you really do not want to take any of this. But if it is helping maybe it's not so bad. (yeah i know this coming from the one who wants to go off cymbalta)...maybe this falls in the category of do what i say not as i do lol...

Keep track of how you feel closely.

Last edited by WoodsWalker; 06-27-2012 at 03:48 PM. Reason: i dunno

 
Old 06-29-2012, 08:08 AM   #8
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Re: okay i could use some input please, giggle.

Hi Blue, had a great reply for you, wonderful advice.....giggle....at least I thought so....giggle. I hit to post it and it has disappeared into the world of the internet I suppose. Some weird stuff popped up on the screen. So all I am going to say is " live it one day at a time, one minute at a time if you have to. And all though I did not say this in my disappearing post, eventually you get use to it...giggle. Sometimes I like my foggy world. Maybe I'll repost it when I have more time and am not frustrated that my helpful advice disappeared.

Glojer

 
Old 06-29-2012, 06:40 PM   #9
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Re: okay i could use some input please, giggle.

Hi, I got a presrip. For tizanidine, a muscle relaxer, and what I liked was that it came in a gel cap. I bought some empty gel caps at a health food store, and I would have half of a pill if I wanted to be alert. Then I kept the larger healthfood half in the bottle, and it was easily identifiable as a half because it was a different size.

I read that the possible reason for some of us not getting much relief from the pain meds is that our body has put it's own natural opioids on pain receptor sites, and they are both not as strong as the prescription med and blocking the med's ability to be on the receptor site. It makes sense to me when I think about it, that the body would always put it's own opiods out there, because we're always in pain.

My pain specialist says that it is best to take the pain meds all the time by the clock, not as needed. i don't know if it's because of getting it a chance to get on the receptors, or if he was saying that is the best way to avoid the phonomenon of tolerance, or both.

Once I came across something from a doc with a book on fibro, and according to him, taking opioids somehow just keeps the body turning up the pain signalling, and can cause permanent nerve damage. I have not given up my meds since reading that. I have just stopped upping the dose to fix the fibro. I'm taking only as much as I need for my back problem. The fibro I live with.

 
Old 06-30-2012, 07:54 AM   #10
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Re: okay i could use some input please, giggle.

hi all,
thanks for the input. glojer you slay me. if you remember, giggle.
thanks sis. i hear ya.
raquel i don't take any meds for fibro. these are for something else and i am noticing an increase in fibro related discomfort. i also refuse to take the pain meds on a clock, i listen to my body. if she doesn't need it i'm not taking it. yes, my doctors suggest the same thing, all but one, who says do it your way, less is more. her i listen to. giggle.
taking a break from plaquenil for a few days. need to regroup and see if it makes a diff. it does. i feel delightful today. awoke to the warmest morning so far. heaven.
only forgot one errand yesterday. not bad. i'm getting better at it sis! tee hee.
oh, i also notice the less often i take them the better they work. must be some truth to the natural opiums my body secretes being stronger. love that!
peace,
blue

 
Old 06-30-2012, 04:34 PM   #11
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Re: okay i could use some input please, giggle.

only forgot 1...ha! not to bad sis! Glad you're feelin' better today. I'm in the same camp most of the time as far as the less is more most of the time. I forgot to take my cymbalta twice this week, so did half doses seeing as half the day was gone before I remembered. This whole week has been a series of fibro foggy forgets for me.

I left my wallet and keys 200 miles from home, good thing other people who were there also live on this side of the state and left after me (i wasn't driving) and brought my stuff back with them. Another good thing is I know who is the last one out of my house, so it was almost a given the door wasn't locked and I got in. On the plus side I left my van key at the house of the person who drove so they could move it out of the way if they wanted. So i had a ride home.
other minor bits and pieces of my mind fell away thruout the week.
Yesterday I left the house only to find out I grabbed keys, but they were not mine!!! Locked out of the house and truck... found an unlocked window and climbed my way in.
Got my keys, locked the window and left again.

Isn't life fun

 
Old 06-30-2012, 07:06 PM   #12
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Re: okay i could use some input please, giggle.

WW, the answer to your question.....NO.....life isn't fun......giggle! That is just a commentary on my day today. Actually I believe life is what you make it. You can choose to be happy or mad all the time or whatever. The only thing you can't choose is whether to remember or not.....funny how that works out isn't it.
Blue, Rhaquel, WW, I hear you on the trying to see if the meds work and can you take lower dosage etc. I've tried that with my meds. Mostly with prednisone, that can be such a rough med. I tried to come down on the dose and tried getting off of it completely. That was not a fun thing. I was trying a new rheumy and she wanted me to get off it. She turned out to be a bust....really bad experience with her. Only two visits and she got fired. Anyway I have proved several times that without the prednisone, my joints are going to hurt, which proves inflammation in my joints. So what did I just say.....that I'm stubborn as a Missouri Mule, and more than one time I put myself through pain and suffering to prove a point. Hello, no learning taking place here.....giggle! Hope you all find some answers sooner rather than later.....and you find out what works and what does not and how much of a good thing you need to take.

Glojer
PS The down side to it all is eventually some drugs do seem to not work and you have to start all over again and think about using new ones.

 
Old 07-01-2012, 12:10 AM   #13
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Re: okay i could use some input please, giggle.

Hi Blue - sorry that things are a bit tough right now - knowing you, you'll find a way through this - you always do!
So you're writing everything down in a book - how about then setting a daily alarm on your phone to act as a reminder to check your book. I'm not sure what sort of phone you have - I use an I phone and it's THE MOST useful item I have as it has a to do list on it - all of which you can alarm per item if you want or just set an alarm on the clock - plus there is a general notes page - and if you think you're going to forget where your phone is you can buy an attachment that you clip on to you/your handbag so it's always with you.
Modern technology is amazing and staying up to date with it gives us a whole new lease of life. I'm not a technical person but have found all things "Apple" whilst more expensive are so user friendly that they're a breath of fresh air
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Old 07-01-2012, 07:16 AM   #14
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Re: okay i could use some input please, giggle.

hi girls,
good idea with the phone. mine is not fancy but it does have an alarm clock i just found a few weeks ago. giggle. i will do that.
dang sis. i'd be up a creek if i had to climb thru a window. thanks for the chuckles, i could just see it all in my mind and it is funny.
sorry you had a rough day glojer. hope today is better.
i forgot to take one med yesterday afternoon and had a rough nite. remembered at 6 and said to self, too late and not feeling too bad. skip it. wrong idea. oops! giggle.
hey sweet, thanks for the confidence shot. you are right, i will find a balance and be fine.
wow, i am a grump this morning. what a yucky feeling! decided to take today off and take the muscle relaxer that knocks me out. that way i can have a lovely afternoon and evening later.
it's a foggy cool morning and i hear my hot tub calling out to me. good idea. floating does feel so good.
one of my gdots is coming tomorrow with her boy friend to sleep over and hang out. so glad some of my gkids are old enough i don't have to fake it in front of them. well, not as much as i do the little ones. giggle.
i was going to say something and totally lost it. time to go. giggle.
peace,
blue
nope, still gone. oh well. giggle.

 
Old 07-01-2012, 09:40 AM   #15
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Re: okay i could use some input please, giggle.

Blue, glad you will have the company of your gkids. Yes, them being older and not having to fake it is nice. Funny story about my oldest gkid J. who is 9yrs. Yesterday we were looking in his book of bugs and he started reading and commenting on the tick and that you can get a disease from them. I told him that some people are diagnosed with my disease when they really have lyme disease from the tick. He said what disease do you have.....I said fibromyalgia and Connective Tissue Disease. He got the most puzzled look on his face and said....I don't understand, how can you have a disease against tissues.....! Tissue to him is a tissue for your nose. I thought the innocents of children. I gave him a brief answer and he was satisfied. I continued to bounce the 2mo. old on my lap, keep looking at bugs and making the appropriate .... really... oh yes,.....that's yucky comments while he kept talking. All the while I was trying to get the 3yr. old to stop saying watch this and jumping off the arm of the sofa and doing belly flops and falling backward on the cushions to get his attention.
Fibro....what fibro!!!!! I would have sent them outside to play but we have a heat wave, it is over 100 degrees during the day now. J. said they fried an egg on the driveway Thur. when it was 108. I said did it really fry, he said yes and then Holly (the dog) ate it. Never a dull moment.

Glojer

 
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