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Pollen

Member
Joined
Feb 6, 2015
Messages
11
Reason
DX FIBRO
Diagnosis
11/2014
Country
CA
State
ON
I am fighting with this. People say you're in pain for a reason and you are just masking it but with Fibro that pain is a miscommunication with the brain so it is telling you something is wrong with your hip when your hip hurts but there is nothing wrong with it. Mine hurts all the time and there is nothing wrong with it, I've seen so many doctors believe me my aches and pains have nothing to do with an injury it's just my brain ****ing up. So now that we got that out of the way let me explain.

I hurt from fibro, I want pain relief for the fibro. I am on Nabilone, it does well but once or twice a week I cannot function because the pain is so bad. I have actually contemplated buying diapers so I don't have to leave my bed on those days that is how bad it is. Those days I can't sleep without pain medications, or get our of bed, or care for myself at all really. My doctor doesn't want me on narcotics, I don't want to be either but my med coverage doesn't cover tramadol even though it really is my best choice. So my choices are oxycodone, morphine or fentanyl.

I don't want to feel guilty for taking a pain medication when I am in so much pain I cannot eat. That is reasonable isn't it? To take a pain medication when the pain is so bad you've wet yourself? ( yes it does happen it is terrible I would never wish this on anyone )

I understand how dependency works, but I am not sure what other choice I have. How is it fair that I be morally obligated to lay in bed in excruciating pain when there is something that can be done about it? So what determines when it is okay to take pain meds? What formula is used to determine whether it is medically necessary or not? My physiatrist wants me on fentanyl patches and my family doctor doesn't even want to give me oxycodone. Which one is right? The person who regularly treats chronic pain or my family doctor that has known me my whole life? I have never been a drinker or a drug user, I wouldn't take the nabilone if I didn't have to so considering this type of medication is a very hard decision for me.

Is it okay to take narcotics a few times a week on the really bad days? Is it okay to take them so I can sleep? Is it okay to take them so I can get out of bed to use the toilet? Is it okay to take them so I can eat? Is it okay to take them so that I can not be in pain that is so debilitating I cannot function? Where is the line?
 
Yes yes and yes. I take tramadol twice a day with paracetamol. I have a family to care for. And frankly who's business is it anyway. I don't shout it from the roof tops but I don't hide it.if I'm in the play centre and I need them I take them.i never tired the pat hie but some ppl here say there a live savers one sit there in pain that's just silly xxxxx
 
I can only take the oxycodone (semi-synthetic opioid) Full synthetic opiods make me really reactive and give me harsh after effects. Same with psych meds, im in the low 5% of people who get weirdo side effects. Remember the law for doctors has changed regarding prescribing certain types of opiods in the USA. The government has made it really difficult for doctors to justify large prescriptions of some pain meds. So what do the doctors do...tell you that you need something else. Not based on science but based on government pressure. So If you find something that works, fight for it (if your insurance company will let you). Its a hard battle but its ok to seek relief from your chronic pain. Nothing is wrong with that. Good thoughts sent your way pollen!
 
Pollen, I think it's about what you need. If it gets you through a tough day, that's great. I've mentioned before on this forum that I try to use a mix of things-meds, exercise, diet, meditation and supplements to get me through each day. Some days the only thing that works is doubling up on Tramadol and Tylenol, and even that doesn't ever take away all the pain. Nothing does. Managing all the symptoms of fibro is a challenge. If you find something that works, do it. Take care.
 
Take what helps you live
A low pain life.
Come to terms that the
Pain will not go a way.
You will have to live with a curtain
Pain level. Mine was level 2. Now its getting to be a level 4.
That's just how it is. Find your triggers and avoid them. One of mine was family! Stay well! Help others in here with what you learn.
 
I'm on the fentynal but they pulled my
Oxy as they don't mix and can kill you.
 
It is up to your doctor to keep you free of pain and for you to have "quality of life"!
I would ask him for pain relief each time you visit him.
 
On hydrocodone as needed. Sometimes I can deal okay without it (not that I'm not in pain) and sometimes I get tired of the pain or the pain flares and I need it. I think there needs to be a different method of thinking for our illness(s). We are in pain. I would rather be addicted, if that's what they are really worried about, than be in pain. I can tell you, I've been on hydrocodone for probably 5 years or more. I can go weeks if need be without a blink of an eye. Unfortunately, I'm not going weeks anymore, but I do go days. I don't even think about them. Why can't we have some flexibility if it brings quality of life?
 
Yes it is ok. I have just switched from percocet to oxycodone so that it isint as harsh on the liver. I would be in alot of pain without it. I have just recently been put on this and it is the only thing that allows me to function for a few hours at a time. I have been told by my pain specialist that as long as it is used for pain then it is ok. That is what it is meant for.

I hope you find some relief soon. xo
 
Oh Pollen my heart goes out to you. i have arrived at this point for exactly the same reason as you. i was diagnosed in April 2014 im up and down with the pain and fatigue as i think we all are here. my question is Is this as good as it gets, having 3-4 good days a week? Or do i need to speak to my pain speciallist further. Im on Lyrica, Cymbalta and Tramado and Vit D/Magnesium.. For the last 4 days im in agony.
 
Here's what I don't understand. Many of the meds we are prescribed start at a lower dose, then as our bodies start getting used to it, they increase it. So with pain meds, if our bodies either start getting used to it or our pain levels increase, why are they so hesitant to increase it a reasonable amount. I have a very high tolerance for medications. When I had my colonoscopy the first time, it took a double dose to take any affect. That should also be a factor. I'm not complaining because my physician has been fine with me, but he does get funny if I want to fill it a week or so sooner sometimes. It was just a thought I wanted to put out there....I do wish I could have something stronger than hydrocodone sometimes though....
 
Tbaer, are you in pain mgt?
You see GPs and roomy and neurologist have a limit and can't prescribe higher than what your taking. I had to go to pain mgt so I could get Morphine and stronger drugs.
I'm sorry for you pain level.

I keep track very day of my pain levels.
So when I went to PM on Friday, I had the exact number of hours and days at the pain levels. I then came up with an average pain level for the month. Also had the number of days of break through the morphine days.
Makes it easier to get the dosage you need.

Thanks for reading
 
BTW hydrocodone is for cuts on the outside of the body. Per my GP. That's why you get it after surgery and dental work. Oxycodone is for inside the body. Per GP.
My GP can't prescribed oxy.
 
What a good discussion! I struggled long with this about 2 years ago. I was sitting on the corner of the couch every day crying, unable to care for anyone/anything telling myself to quit being a baby and get tough. I had already been through a few serious problems with thyroid, back and kidney that left me utterly drained and in constant pain. A friend of mine, a hospice worker, encouraged me to take what I needed. Very good advise! If I don't live as long because of it so be it!

I have never taken drugs before except after a surgery, or OTC. I have a brother that has been a druggie for 30 plus years and was very afraid of addiction. There is a difference btw addiction and dependency. I'm not "using" for entertainment or escape.

I'm on a Fentynl patch for chronic back and kidney pain. And in the process of injections, (prolo therapy), for my back and migraines.
I have hydrocodone as needed but it's not really helping the fibro pain. My legs are so painful! I was on Cymbalta for many months and it helped the pain but I could barely stay awake and couldn't comprehend anything I read. I'm still looking for something for my leg pain. It has become incredibly bad if I'm on them very much at all, and more often for no reason at all. I did refuse Lyrica as it makes you gain weight. I lost 68 lbs last year and I don't want it to find me again! I read that opoids do not bind well with the brain, (or the certain receptors in the brain), for FM sufferers. But it sounds like in this discussion that most ARE helped.
I also take amitriptyline at night to sleep. If I don't take it 3-4 hours before I go to bed I have to wait up for it to work. I tried 3 other drugs for sleep but after a few days they didn't work.


In answer to terbaer's question, I think it's because if Dr.s continue to raise the doses, they are afraid that someday nothing will help us as we get so accustomed to the higher doses.

My neuro--for my back-- warned me when he turned me over to pain management, that if I was not careful, just because my pain level would go down, (on pain mgn't ) , I would get to a point (for my back), where I could not be helped.

My heart goes out to all of you! We surely didn't expect life to become like this! As a Christian I know this is the worst hell that I will ever have to go through. Eternity is no more pain, tears or sorrow with my Lord!
 
I can only take the oxycodone (semi-synthetic opioid) Full synthetic opiods make me really reactive and give me harsh after effects. Same with psych meds, im in the low 5% of people who get weirdo side effects. Remember the law for doctors has changed regarding prescribing certain types of opiods in the USA. The government has made it really difficult for doctors to justify large prescriptions of some pain meds. So what do the doctors do...tell you that you need something else. Not based on science but based on government pressure. So If you find something that works, fight for it (if your insurance company will let you). Its a hard battle but its ok to seek relief from your chronic pain. Nothing is wrong with that. Good thoughts sent your way pollen!

I went to my pain specialists and we are trying the oxy you are talking about next actually. I am also one of those people that reacts differently than most to medications. I am in Canada and this Doctor pushing other meds thing isn't an issue in fact my doctor would prefer I take Tramadol it's just not covered by my government disability because it's newer to Canada and much more costly. It is very unfortunate as it has far more benefits for us FM sufferers than traditional narcotics plus it does not have the same physical dependency that narcotics have. Unfortunately the government will not take this into consideration at this time and until I try all the covered narcotics they wont even consider funding for it. In fact the committee that made this decision doesn't even know it's a non-narcotic opiod like medication. They don't even acknowledge the extremely low risk of dependency and addiction in their assessment of the medication or the reduced risk for adverse affects and they based their decision solely on how well it kills pain for most people and because most people do not have narcotic resistance like FM people do it is as effective as say Tylenol 3 (which my pain management doctor calls a constipation pill because she find it does nothing for chronic pain sufferers other than that and I can attest to that) None of this additional information is taken into consideration. A lot of medication on the formulary has exceptions for instance certain doses of Celebrex are only available for those suffering from rheumatoid arthritis so it seems to me they should make an exception for those of us who would have to use far more of the other medication which in the end costs them just as much as covering the medication that works in the first place! Sigh, in the end even if I try and rule out all other covered narcotics they likely will not give me funding. If I have to I will pay out of pocket because it really is such a better medication for me and hopefully one day they will fund it. I really don't see how they cannot, for chronic pain sufferers dependency is a huge issue and this medication has much less incidents of dependency. I have already decided to contact my local member of parliament if after trying all other covered narcotics I still need it and they refuse to cover it. If I have to I will scream it from the damn roof tops until something is done about it. In the US it is the go to medication because they acknowledge the lower risks involved with Tramadol and yet it is still as effective at killing pain as a traditional narcotic. In the US you can get 120 Tramadol for 15$ out of pocket without insurance in Canada for 60 pills it's 80$. This is the only instance I could find where medication was cheaper in the US compared to Canada and I think that the US made it affordable because they are trying to bring down incidents of addiction among those who receive pain medication prescriptions. Also generic is available in the US and I am not sure it is in Canada. Either way Canada has to jump on this band wagon eventually, we are just a little behind the US when it comes to this stuff.
 
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