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Old 02-20-2011, 08:51 PM   #1
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Fibro getting worse and worse quickly

Hello, I am not sure where to start but here goes lol, m name is Valerie I am 55 was diagnosed with fibro about 2 years ago but I am sure I have had it much longer.My last Dr in Colorado (FP) did not believe in fibro he told me that its called getting old and everyone has it eventually.Needless to say i was dumbfounded as far as he was concerned there was nothing to talk about eventually i moved back to california and found a new Dr who did diagnose me with fibro and CFS anyway by the time i was diagnosed it was pretty bad as far as the pain and the fog I also have arthritus (severe) in my knees ,hands, and neck I am diabetic on insulin, I have sleep apnea, as well as a pacemaker for tachy-brady syndrome and afib to mention a few things lol,anyway my new Dr gave me pain pills he started giving me norco 10/325 these worked to a point but did not last long but i kept taking them for about 8 months finally i could not take it anymore the pain was just to much so i asked him what we could do was there something else i could try (i am allergic to morophine) so that was out so we tried percoset which did less than norco at this point i went back to norco for a while taking a little more than before but still it was not releaving the pain enough ,I did not have much of a life so next he decided to try dilaudid at 8mg 1 or 2 every six hours now this worked but only for like 3-4 hrs so i had 2 hours of more pain so once again back to the drawing board this is when he mentioned methadone I was not thrilled about methadone because of what it is known for my brother was a junkie and used it when he was trying to get off of heroine so it scared me anyway i did some reading about it and thought about it for a few weeks and then decided to try it he started me on 30mg 2 times a day with dilaudid for break thru pain at first it was great it took a good part of the pain away with the dilaudid so i was thrilled i felt better than i had in a long time sadly this was short lived after taking this combination for a couple of months it seemed like it was not doing as well as it had but still good enough to tolrate it but then i started having issues with being so sleepy and lethargic i would fall asleep sitting on the couch like i could not keep my eyes open and this was depressing so i told the Dr about it and told him i just did not like the way it made me feel once i stopped taking it and suddenly i was awake again lol so once again back to the drawing pad but we were very limited due to insurance which does not cover much in the way of long term pain meds i guess there are some newer ones out there the only one it did cover was fentanyl patchs with a prior auth which we did not know we needed so the dr requested the prior auth it took them 30 days to approve it so i went 30 day just on dilaudid it was a long month needless to say I picked the patchs up 2 days ago but have not used them yet because i need to be able to be home because i do not know how they will work on me most things i have no problem with but need to wait and be on the safe side with these . Well thanks for reading and letting me vent a little.Any info about the patchs will be greatly appreciated,
Thanks Valerie
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Old 02-21-2011, 06:25 AM   #2
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Re: Fibro getting worse and worse quickly

I am so sorry you are suffering as much as you are. I was only diagnosed this summer and have avoided meds so far, but have given into tylenol pm to sleep every now and then. I really dont' have any solid answers for you but wanted you to know I read this and am thinking about you. I hope someone else can help.

 
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Old 02-21-2011, 08:29 AM   #3
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Re: Fibro getting worse and worse quickly

Welcome to the Board, but I am sorry that you have to be here. There are a lot of nice, compassionate and helpful people here.

I was diagnosed in 2007 but like you have had it much longer. I am on a combo of Lyrica (150mg 2x per day) and Cymbalta (60mg 1x per day). My pain is controlled pretty well most of the time. I have hydrocodone(5/500) for break thru pain when I need it.

 
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Old 02-21-2011, 09:44 AM   #4
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Re: Fibro getting worse and worse quickly

I'm so sorry to hear about your difficulties.

I currently do not use narcotics because I don't have any, although I'd like to use them at least occasionally. I do rely on assorted other treatments.

I take nortriptyline to reduce flares and central sensitization. I exercise as much as possible, the Pilates warm-up routine is a good, non-demanding way to relieve stiffness. Hot baths are my friend, hot compresses, ice packs. I get weekly massages. A few times a year, I get a trigger point injection into the deep deep muscle knots that are the source of my worst pain.

Hang in there. I'm 30, had it since I was 18, but I'm much better now that I was, say, seven years ago. Fibro rarely goes away 100%, but significant improvement is possible.

 
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Old 02-23-2011, 09:41 AM   #5
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Re: Fibro getting worse and worse quickly

welcome!..
yes i was DX in 04 but since the age of about 4 (and im 48)... my family knew something wasn't right, full blown pain started in 04 after a pulled my back muscle. all i can tell you is im in severe non stop pain, flu feeling, can just wake,some very like cleaning,shower, make dinner, and light food shop is my life,,,

but im not on any meds at all for over 2 yrs now. I was always at the Drs and lived on 50mgs oxy pain meds , and 6 other meds daily,..lived in bed, couldn't cook,clean, shop,

i didn't have a life what so ever! the constant stress of going to the drs robbed me of the true meaning of life..LIVING in the moment, yes even if that moment in my case is ALWAYS in PAIN...

all im trying to share with you is, i wasn't any better with DRS and Meds,,
the difference is im out of bed and trying to live.

Hugs..Monalisa

 
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Old 02-24-2011, 03:38 AM   #6
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Re: Fibro getting worse and worse quickly

Quote:
Originally Posted by mytrose43 View Post
Hello, I am not sure where to start but here goes lol, m name is Valerie I am 55 was diagnosed with fibro about 2 years ago but I am sure I have had it much longer.My last Dr in Colorado (FP) did not believe in fibro he told me that its called getting old and everyone has it eventually.Needless to say i was dumbfounded as far as he was concerned there was nothing to talk about eventually i moved back to california and found a new Dr who did diagnose me with fibro and CFS anyway by the time i was diagnosed it was pretty bad as far as the pain and the fog I also have arthritus (severe) in my knees ,hands, and neck I am diabetic on insulin, I have sleep apnea, as well as a pacemaker for tachy-brady syndrome and afib to mention a few things lol,anyway my new Dr gave me pain pills he started giving me norco 10/325 these worked to a point but did not last long but i kept taking them for about 8 months finally i could not take it anymore the pain was just to much so i asked him what we could do was there something else i could try (i am allergic to morophine) so that was out so we tried percoset which did less than norco at this point i went back to norco for a while taking a little more than before but still it was not releaving the pain enough ,I did not have much of a life so next he decided to try dilaudid at 8mg 1 or 2 every six hours now this worked but only for like 3-4 hrs so i had 2 hours of more pain so once again back to the drawing board this is when he mentioned methadone I was not thrilled about methadone because of what it is known for my brother was a junkie and used it when he was trying to get off of heroine so it scared me anyway i did some reading about it and thought about it for a few weeks and then decided to try it he started me on 30mg 2 times a day with dilaudid for break thru pain at first it was great it took a good part of the pain away with the dilaudid so i was thrilled i felt better than i had in a long time sadly this was short lived after taking this combination for a couple of months it seemed like it was not doing as well as it had but still good enough to tolrate it but then i started having issues with being so sleepy and lethargic i would fall asleep sitting on the couch like i could not keep my eyes open and this was depressing so i told the Dr about it and told him i just did not like the way it made me feel once i stopped taking it and suddenly i was awake again lol so once again back to the drawing pad but we were very limited due to insurance which does not cover much in the way of long term pain meds i guess there are some newer ones out there the only one it did cover was fentanyl patchs with a prior auth which we did not know we needed so the dr requested the prior auth it took them 30 days to approve it so i went 30 day just on dilaudid it was a long month needless to say I picked the patchs up 2 days ago but have not used them yet because i need to be able to be home because i do not know how they will work on me most things i have no problem with but need to wait and be on the safe side with these . Well thanks for reading and letting me vent a little.Any info about the patchs will be greatly appreciated,
Thanks Valerie
Hi there, using meds does not mean you are an addicted junkie and have to stay in bed unable to function in the real world (as stated below). You have to do what you can as there is no quality of life when you are in chronic pain, it is miserable and unfortunately we have to go through all trials and errors to find what works and this can become frustrating. I take endone and function very normal, I work and study and have children, it does not put a stop to my life, being pain free enables me to have a life. Im still trying to find what works adn have made an appointment to see a pain management dr soon and perhaps better luck. Chin up and all the best for a pain free day.

 
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Old 02-24-2011, 09:32 AM   #7
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Re: Fibro getting worse and worse quickly

If i was the one referred to in a resent post here..(using meds does not mean you are an addicted junkie and have to stay in bed unable to function in the real world (as stated below)
Im sorry, cause i wasn't saying that if you choose to be on meds that's what you are!
I was just sharing what i went through..plain and simple! I wasn't any better on meds Period!

 
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Old 02-24-2011, 10:44 AM   #8
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Smile Re: Fibro getting worse and worse quickly

I think those of us who suffer from Fibro, CFS and whatever else we may have and most of us have more than one thing going on, should do whatever it is that our body requires so that we can live life as best as we can. I am very happy for those who don't have to take meds and use alternative medicine but I am just as happy for those who find the right drug cocktail that works for them too. Me, myself I do some of both and I am fully functioning most days which I am grateful for. I too was bedridden at one point.

 
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Old 02-24-2011, 10:59 AM   #9
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Re: Fibro getting worse and worse quickly

I totally agree with you Pammyann, id take pain meds if they helped my pain too. i was on all different kinds and tried everything, and so sick! i chose to go off meds, and for me im still in massive every second of the day.. pain.
but (FOR ME) im out of bed now.... i was in bed the entire 4 plus yrs,.. really i was, except for dr appt, other appointments. so for now ill do what im doing, doesn't mean some day i may go back to the Drs and get back on or hopefully they might have something new we can try, but for now i haven't found anything that makes any difference for my pain level.

 
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Old 02-24-2011, 11:02 AM   #10
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Re: Fibro getting worse and worse quickly

Monalisa,

I hope you find some things that give you relief.

Hugs,
Pam

 
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Old 02-24-2011, 11:04 AM   #11
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Re: Fibro getting worse and worse quickly

Quote:
Originally Posted by monalisa24 View Post
I totally agree with you Pammyann, id take pain meds if they helped my pain too. i was on all different kinds and tried everything, and so sick! i chose to go off meds, and for me im still in massive every second of the day.. pain.
but (FOR ME) im out of bed now.... i was in bed the entire 4 plus yrs,.. really i was, except for dr appt, other appointments. so for now ill do what im doing, it doesn't mean i wont some day go back to the Drs and get back on meds. hopefully they might have something new i can try, but for now i haven't found anything that makes any difference for my pain level.

 
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Old 02-24-2011, 03:07 PM   #12
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Re: Fibro getting worse and worse quickly

Was not referring to any one in-particular (my apologies for obviously up-setting you) My post was just an observation and personal opinion through my own experience, which I am entitled to as is everyone else.
I Do believe if anyone is bed ridden because of meds perhaps they are taking too many and the meds are not suited to the person , pain management is s'pose to give you quality of life, if you are wiped out in bed then it is not working and I agree that anyone is better off without it or re-accessing their dosage then ending up like this, I would most definitely be looking at alternative therapies if medication is not working.Though I do not understand how one can go from taking so much medication because of pain to taking nothing, perhaps ,I have heard, there are those who go into remission (great) Meds do work for most people if you get the dosage right and have a good doctor to work with. I know what it is like to be in pain all the time and not want to get out of bed and operate, though I have never been on lots of meds at one time to keep me from getting out of bed, but I would feel very unhappy to have any thing less than quality of live, so the ultimate outcome is to be pain-free.Which does happen, but I have not experienced this as of yet.
All the best and please don't be offended by my statements, it is not intended to offend anyone ,I know we all seem so sensitive because of our frustrating experiences (which we experience differently) but it is not personal.
Take Care and I hope you find peace and pain free days.

Last edited by louisef1; 02-24-2011 at 04:07 PM.

 
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