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Old 09-21-2012, 05:11 PM   #1
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Fibromyalgia and more -- is this it for the rest of my life

OKAY!? I have been taking tylenol with codiene for over 25 years!! I KNOW, it is so wrong but true. I don't remember when I started, I have been in chronic pain since I was a teen and no one ever listened, including doctors. I had my first child at 18 and back then I don't know what my "quack" doctor was thinking, gave me demerol after my birth, then from there I myself started taking tylenol #1's O.T.C. --- and have been ever since I can take up to 40 a day or more (basically I go through 200 in 5 days or so)

I have finally been diagnosed with Fibromyalgia - I had cracked a rib about 4 months ago (doctor did a complete physical and said that I definitely had fibromyalgia) and the doctor gave me an RX for percocet (I have taken several narcotic pain meds RX and OTC on and off for years for mild to moderate pain) -- now my problem is that the doctor gave me percocet 4 times a day & tylenol 3's 1-2 tablets up to 4 times a day -- it is working wonders for all my pain, without taking my normal 40 Tylenol 1's a day!!! GREAT?! Wrong, now doctor wants to take me off the RX meds, well I told the doctor and my spouse, then I guess I go back to my normal amount (for me) and just say good bye to my liver. I have never had my liver tested if that is even possible?!!

I also take medication for my:
Panic disorder
Bi-polar
ADHD

NOW I need some in-put, not that my doctor will listen but I will. I function every day life, had 3 beautiful, healthy children. I know today that I take the narcotics now just to function, as well as my wide spread body pain. Although I think being under doctors care with Rx's than it is to medicate myself?? Yes/No - after all these years I need the pain meds, and as I said very happy with the resent RX for 4 months, I feel pain free everyday, now the doctor wants to change it because it is addicting, well no kidding!!! I have struggled with for years, find a happy medium and you want me to go back to my own medicated self? Makes no sense to me -- I am sure all you out there in message board land will have a LOT to say!

First time message board - long time addiction.
Sorry for babbling, feels good to say it all though!
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Old 09-21-2012, 06:57 PM   #2
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Re: Fibromyalgia and more -- is this it for the rest of my life

Big big hugs to you!!! Sadly narcotics and over the counter pain relievers don't kill the pain of fibro. Some people have found that it helps, also have found that exercise, physical therapy, yoga, massage helps and for others nothing helps.

I have a combo of issues that causes my chronic pain that there isn't just 1 thing that helps.

You aren't alone. Personally I refuse to take narcotics because I can't function feeling high every day. Your doctor needs to listen to you.

 
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Old 09-21-2012, 07:46 PM   #3
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Re: Fibromyalgia and more -- is this it for the rest of my life

Thank you for listening. I take the narcotics now just mostly to function. I don't feel high or take it for "fun" - although I think some days what it would be like NOT to have to take all my medication, for all my problems every single day! I know some I have to take or go into bi-polar swings and risk the chance of feeling so manic, to solow and depressed - on another note it would be nice to be pain free - I just became a grandma to a beautiful baby girl in March and would like to keep up with her and enjoy life! Either way thanks again for listening, and I will try to keep posting my journey with pain management......
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Old 09-21-2012, 08:11 PM   #4
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Re: Fibromyalgia and more -- is this it for the rest of my life

Awww congrats on your granddaughter. I hear ya on wanting to be pain free. I do my best to not let it all get to me and to be in control but I also have days where it controls me. I wish I could take narcotics but it makes me feel funny and high and I make not so good decisions.

 
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Old 09-23-2012, 07:41 PM   #5
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Re: Fibromyalgia and more -- is this it for the rest of my life

mom477 thanks, yes to be pain free would be wonderful for all us that suffer - my granddaughter is hard to keep up with and she is not even crawling yet!! Although when I am with her I do my best and enjoy every second. I guess all of us with chronic pain have to do our best and move on with life. I wish you pain free days if I could I would change it, I don't like to see anyone in pain. Here is to hopefully some new ways for pain management - well I can dream at least lol
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Old 09-24-2012, 08:33 AM   #6
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Re: Fibromyalgia and more -- is this it for the rest of my life

I'm sorry you are going through this. I am also bipolar, and I struggle with managing my thirteen year old daughter's fibromyalgia. I can tell you that we have found that narcotics won't touch fibro pain. Fibro is neurological pain, and is treated with medications that mediate the neurotransmitters, such as amitriptyline, neurontin, gabapentin, etc. With respect to bipolar, I have turned to herbal remedies, such as L-tryptophan and 5HTP, a hops/valerian blend and melatonin (sustained release), as well as Jigsaw time release magnesium.

Taking forty tylenols a day is suicidal. Saying "bye bye" liver is not a joke. Living with fibro pain is still living. Dying of liver failure is a new level of misery entirely followed by death. Given your history of tylenol use, you may be much closer to that liver failure than you think.

Telling your doctor that if he won't prescribe long term opiates, that you will take forty tylenols a day, is basically blackmail. It is a pattern of behavior that is common with bipolar. A doctor is not going to be influenced by manipulative patient behavior. He will respond based on the medical situation. A doctor will not prescribe a long term course of opiates for a simple reason -- they won't work. Physiologically, your body builds up a tolerance, and the medication doesn't work. Also, the side effects of chronic opiate use (paranoia, etc.) will exacerbate your other mental health issues such as the bipolar and panic disorder, and also make the symptoms of your fibromyalgia much worse.

I strongly suggest that you investigate herbal remedies such as Valerian. We have also found that Tiger Balm is very helpful.

 
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Old 10-04-2012, 02:19 PM   #7
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Re: Fibromyalgia and more -- is this it for the rest of my life

Can you be referred to pain management? Also, have you tried Lyrica, Cymbalta or Savella which are for fibro? These can be of help. I take Lyrica and Cymbalta together and I am pretty much pain free. I have hydrocodone for break thru pain but only occasionally need it. Taking 40 Tylenol pills a day is not the answer. There has to be a happy medium here somewhere.

 
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Old 10-05-2012, 06:55 AM   #8
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Re: Fibromyalgia and more -- is this it for the rest of my life

For me having fibro means I will always have pain - until I can somehow find a way of kicking this out of my body!!!! However...........through the suggestions that others have previously given you can still function and have a really fantastic life with fibro.
For me meds/narcotics etc are NOT the answer - as others have said our bodies either get dependant on it or we build up a tolerance - either way the quantities etc just keeping going up and our liver function goes down - along with problems with kidneys/hearts etc etc.
Fibro is horrible - but if you exercise/take your vitamins/have massages/hot baths etc etc these all help to reduce it and will give you a better quality of life - rather than potentially NO life if you carry on with the meds/narcotics. Sorry if this sounds harsh - but it's a POSSIBILITY. No-one has died from fibro itself but millions die from narcotic/meds usage - pain specialists will be able to help you as will a great personal trainer. I've been having PT once a week for the last couple of months who has a degree in bio mechanics - he's the first person I've come across who really seems to understand fibro and how far our bodies can be pushed - with the right exercise/stretching. I'm getting stronger day by day - he's got me using 8kg kettle bells - a few months ago I would never have believed it possible - and I'm feeling so MUCH better. Still with pain but less
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Old 10-05-2012, 07:40 AM   #9
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Re: Fibromyalgia and more -- is this it for the rest of my life

Hi Missy, someone I know is suffering from Fibromyalgia at present and was going to be prescribed prednisolone. Before that he switched over to the Ayurvedic treatment route and this is the first week of treatment. I heard yesterday that some of the pain is subsiding and that is not due to pain killers. It is medicine that works internally and through ayurveda, there is a lot of cures that are not possible through mainstream pharmaceuticals. I encourage you to try the ayurvedic route with a good practitioner. It may take time but you might be able to get some really good results which will take you off pain killers.

 
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Old 10-06-2012, 02:52 PM   #10
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Re: Fibromyalgia and more -- is this it for the rest of my life

Quote:
Originally Posted by MissyMousey View Post
Thank you for listening. I take the narcotics now just mostly to function. I don't feel high or take it for "fun" - although I think some days what it would be like NOT to have to take all my medication, for all my problems every single day! I know some I have to take or go into bi-polar swings and risk the chance of feeling so manic, to solow and depressed - on another note it would be nice to be pain free - I just became a grandma to a beautiful baby girl in March and would like to keep up with her and enjoy life! Either way thanks again for listening, and I will try to keep posting my journey with pain management......
I so agree with you about the narcotics not making you feel high but just being able to cope with the pain and have some sort of life! I told my RA specialist that and he acted like he didnt believe me! They were talking of taking me off too but i have endometrioses and low back pain and RA told me i could stay on them for that. Most all the medicine they give you is addicting, I was on Cymbalta (didnt help) and coming off of that was HORRIBLE worse thing ever and they cant tell me after that that it is not addicting to your body but they prescribe it all the time.

 
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Old 10-06-2012, 03:03 PM   #11
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Re: Fibromyalgia and more -- is this it for the rest of my life

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"Telling your doctor that if he won't prescribe long term opiates, that you will take forty tylenols a day, is basically blackmail. It is a pattern of behavior that is common with bipolar. A doctor is not going to be influenced by manipulative patient behavior." .
I do not believe she is trying to blackmail her doctor, it is just simple truth. What do they expect? For us just to be in pain all the time, it gets so bad you cant even function, what kind of life is that? IF it helps it helps period. I do not understand why there is such a hubbub about it. Most people with chronic pain are given narcotics long term. It is just not approved for Fibromyalgia long term. I take Norcos, I have a set amount i take in a set pattern and I will not go above that. If i let my pain get out of control nothing will help it. I have tried not taking any pain pills but learned my lesson with that and suffered for it. They do not make me feel high at all, i do not want a pill that makes me feel high or i would just smoke weed. I do not want that. If these doctors or healthcare coverers or FDA people had to deal with this everyday, day in day out they may reconsider this.

 
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Old 10-06-2012, 07:17 PM   #12
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Re: Fibromyalgia and more -- is this it for the rest of my life

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Originally Posted by Firerose78 View Post
I do not believe she is trying to blackmail her doctor, it is just simple truth. What do they expect? For us just to be in pain all the time, it gets so bad you cant even function, what kind of life is that? IF it helps it helps period. I do not understand why there is such a hubbub about it. Most people with chronic pain are given narcotics long term. It is just not approved for Fibromyalgia long term. I take Norcos, I have a set amount i take in a set pattern and I will not go above that. If i let my pain get out of control nothing will help it. I have tried not taking any pain pills but learned my lesson with that and suffered for it. They do not make me feel high at all, i do not want a pill that makes me feel high or i would just smoke weed. I do not want that. If these doctors or healthcare coverers or FDA people had to deal with this everyday, day in day out they may reconsider this.

Doctors don't usually give fibro patients narcotics because it is a nerve pain more than muscle pain and there is nothing that will take that nerve pain fully away or even majority.

 
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Old 10-06-2012, 11:17 PM   #13
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Re: Fibromyalgia and more -- is this it for the rest of my life

I take Percocet daily in addition to Effexor (just switched from Cymbalta) and Flexeril as needed. I have an on-going script for 60 Percocet filled every 28 days. I find that they help with the fatigue. If I take one I can get out and do yard work, house work and many other things. I just recently switched doctors and I told him that I've taken them for some time and they help me function. He didn't seem to have a problem prescribing them. He said the medical community has a score (or something like that) that they assign people. I score at a 5 out of 100 as far as my opiate usage.

Not only do I have nerve pain but I have disc issues as well. Pain pills help me function and let me live my life.

 
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Old 10-09-2012, 04:21 PM   #14
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Re: Fibromyalgia and more -- is this it for the rest of my life

Thank you all!!! I am not trying to blackmail my doctor!! It just amazes me that there are so many people out there in pain be it fibro - back injuries - migraines, etc... there are a lot of people out there with chronic pain.... I just don't treat my fibro with the narcotics, It also treats my sciatica nerve, tailbone pain (I have fractured my tailbone twice, and that pain never goes away), carpo tunnel syndrome, migraines, and so many other things wrong with my body. What I don't get is someone with little or no pain, get these medicine's from their doctor and they are out there selling it!!! I got asked the other day, "Why are you taking them, you should sell them and make money!!" My answer, "because I need them for my chronic pain!"

Yes I have tried cymbalta and all I did was throw up all the medicine I took with it and/or food - so obviously I can not take it. I am allergic to any non-steroid anti-inflammatory drugs.... so advil, ibuprofen, etc I can not take as my throat swells and break out in hives... my epi-pen is always where ever I go.

So to sum up for now, thanks all for replies, and until further notice as of this date, my doctor has increased my flexeril up to 3 times a day, and tylenol 2 3-4 times as needed and percocet 1 tablet twice daily.

It makes me very unhappy to say I am trying to blackmail my doctor, I am doing the best I can to try to save my liver from taking tylenol with codeine for the last 25 years or more... I am treating several chronic pain not just fibro -- to go along with my bi-polar, panic disorder, ADHD... etc

thanks again all!!
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Old 10-09-2012, 04:28 PM   #15
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Re: Fibromyalgia and more -- is this it for the rest of my life

Firerose78 -- I have not been suggested prednisone, although I don't know that would be the right drug for me, I take 4oomg of serequel at bedtime and I have packed on over 40 pounds in the last 3 years and gaining more every day. My daughter in-law was taking prednisone and she put on over 100lbs since she has been on it. No thanks I don't need any more weight gain, as I would be even harder for me to walk, move and be there for granddaughter... I deal with enough pain in my legs and back. THANKS so much for the suggestion, I will mention to my doctor next week, but I don't want to gain more weight so it will be one or the other and I belief the serequel is doing it's job right now...
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