Who prescribes them for you and how do you take them?
Although my Internist, who works hand in hand with my Rheumatologist and Chiropractor wants me ta take them as a maintence drug, I only take them to prevent or break a pain cycle. I am hoping that the Enbrel is so effective that I can dispose of them all.
My rheumatologist prescribes Mobic for me. I recently stopped taking it as Arava seems to have reduced pain to aching which I can tolerate with Tylenol. He wants me back on Mobic (1/2 dose). I am liking not being as sleepy without pain meds, so am eager to read others’ experiences. Hoping Enbrel gives you expected results!
My rheumatologist prescribes me prednisone for pain and fatigue, Naproxen for pain associated with inflammation and Panadeine Forte which is codeine based for helping me rest and sleep (short term). My rheumy is very cautious about strong opiate based pain meds and has made a point of dicsussing all options with me including morphine patches and endone (oxycodone). His view being that unless absolutely necessary to function, the strong opiate based meds only cover up the pain and don't actually treat the cause of the pain...they can also be physically addictive and that brings all sorts of new issues to the table.
Also interested to read what others are taking and how they find it works for them (or not).
I quit opiates 10 years ago. I wasn't addicted ( or at least I didn't have withdrawl) they simply weren't getting the job done. I needed more or stronger. Even then they did a poor job of masking the pain. I always knew it was there just duller. But the phony sleep, rash, and constipation were just as miserable as the pain. Now anyone who tells you that you can overcome the pain with meditation, visiuzlization etc is full of chit. But....
I did learn to combine a number of things. PT, stretching, yoga, ice, heat and TENS. Cardio until you get an endorphin buzz (there is always a way) Predi bursts, massage. Its the combinations. Torodal, flector, and muscle relaxants. All attack the sources.
Now that isn't to say I haven't used opiates since. There has been some surgeries a few injuries. (Last year I fell off a ladder trying to put an old TV on a shelf and broke my arm, had the TV land on my face and break my nose and fracture a cheek bone and 12 stitches. Do you know how cool it is to have a couple hydrocodone knock you on your butt?
I don't take them unless I absolutely have too. Even though my neck, back and feet are in constant pain, I still don't take them. I really don't like to use drugs. I fought with myself over taking Enbrel. I do take it, because if I don't I know I will end up crippled in a wheel chair.
I take tramadol as needed. Well, not as needed ... I should probably take it more than I do, but I'm SO afraid of it becoming less effective. My pain management options are limited due to other health issues.
I guess I'm the druggie! Been on opiates off and on for most of my adult life; contusions, bursitis, surgeries, sprains, many-many-many back issues. My biggest and most consistant reason for opiates has been the RSD in my right hand/wrist. For those who aren't familiar, RSD is "Reflex Sympathetic Dystrophy" or as it's more commonly refered to these days "Complex Regional Pain Syndrom" aka CRPS. Basically the nerves are working overtime in my hand/wrist do to 4 wrist surgeries. Final procedure being a total wrist fusion. The children in my wife's classes (kind. - 1st grades) think that the 4 inch scar on the back of my hand looks cool. You should see the loks on thier faces when I tell them that I can't bend my wrist anymore. Back to the opiates, I am on a schedule of 8 Percocet and 3 MS Contin daily. Some people ask if this leaves me in a daze. I've taken so much meds. for so long that it hardly phases me nor does in relieve pain the way it used to :<(
After hearing of your nerve tests and then reading about the referred pain, since my muscle and nerve tests came out okay for the second time, only showing mild CT, it sounds like I either have referred pain, joint issues in my wrist, the Sjogrens or Raynaud's are worse, or a little of all of it besides RSD. Wish you didn't have it either BuickBoy. Must be horrible! Don't worry, my wrists are on the list for the Docs I see in about a month.
I agree. I mix and match drugs and exercise as much as possible. Constant use of any painkiller seems to reduce its efficacy, apart from celebrex. Like you I found that I needed higher and higher doses of opiate based drugs with less result.
tntlamb said:
I quit opiates 10 years ago. I wasn't addicted ( or at least I didn't have withdrawl) they simply weren't getting the job done. I needed more or stronger. Even then they did a poor job of masking the pain. I always knew it was there just duller. But the phony sleep, rash, and constipation were just as miserable as the pain. Now anyone who tells you that you can overcome the pain with meditation, visiuzlization etc is full of chit. But....
I did learn to combine a number of things. PT, stretching, yoga, ice, heat and TENS. Cardio until you get an endorphin buzz (there is always a way) Predi bursts, massage. Its the combinations. Torodal, flector, and muscle relaxants. All attack the sources.
Now that isn't to say I haven't used opiates since. There has been some surgeries a few injuries. (Last year I fell off a ladder trying to put an old TV on a shelf and broke my arm, had the TV land on my face and break my nose and fracture a cheek bone and 12 stitches. Do you know how cool it is to have a couple hydrocodone knock you on your butt?
My first Rhumie told me to take Mobic (Meloxicam) daily but I eventually just took it with flareups. I am now experimenting with coconut oil (1/2 teas daily) plus cooking with it. Also I am soaking golden raisins in gin and taking 12 in the am and 12 in the pm. I have been prescribed Enbrel but haven't taken it yet Sure wish I could find a natural remedy for this stuff. Wow, all this talk about opiates scares me.
Please take no offence to this, I have had absolutley O=Zero luck witn any over the counter or homeopathic medicines. I remember telling the physical therapist, who I saw briefly in the beginning of this 8 month journey, that chances are he won't be able to help me much. When he asked why I simply stated that my body never responds to conservative medicines or procedures. Never has and probably never will. To be honest, I believe the opiates have less negative affects on the body as NSAID's and anti-Inflamatory drugs. Natural opiate derivatives or narcotic opioid alkaloids rather than the synthetic versions. This may or not be true however that is my understanding.
I know lilliesmom, scares us too. My GP thinks that chronic pain causes more problems than the opiates, that if we truly need them there is no possibility of addiction. Even though I am not a medical professional of any kind, am not sure I can agree. I am between there and lambs thoughts on the matter.
Doc wants me to take them as a maintence drug, and that day may come, now I have to be either in extreme pain or have to ride in the car, not driving of course, however I know a lady who has far less of a diagnosis than I who takes two types of opiates round the clock and thinks nothing of driving. I personally feel it is far beyond irresponsible, and into the dangerous.
I would like nothing better than to have the Enbrel work so well that all other meds could be discarded and never used again.
Me too!!!
SK said:
I know lilliesmom, scares us too. My GP thinks that chronic pain causes more problems than the opiates, that if we truly need them there is no possibility of addiction. Even though I am not a medical professional of any kind, am not sure I can agree. I am between there and lambs thoughts on the matter.
Doc wants me to take them as a maintence drug, and that day may come, now I have to be either in extreme pain or have to ride in the car, not driving of course, however I know a lady who has far less of a diagnosis than I who takes two types of opiates round the clock and thinks nothing of driving. I personally feel it is far beyond irresponsible, and into the dangerous.
I would like nothing better than to have the Enbrel work so well that all other meds could be discarded and never used again.
Thank you BuickBoy. I appreciate your input.
BuickBoy said:
Please take no offence to this, I have had absolutley O=Zero luck witn any over the counter or homeopathic medicines. I remember telling the physical therapist, who I saw briefly in the beginning of this 8 month journey, that chances are he won't be able to help me much. When he asked why I simply stated that my body never responds to conservative medicines or procedures. Never has and probably never will. To be honest, I believe the opiates have less negative affects on the body as NSAID's and anti-Inflamatory drugs. Natural opiate derivatives or narcotic opioid alkaloids rather than the synthetic versions. This may or not be true however that is my understanding.
Its important to remember there is absolutley no way any homeopathic and/or naturapathic medication can have any effect on PsA. If it appears to, its luck/coincidence. ( not that luck is a bad thing) The whole theory of both approaches is to boost the immune system in order to cure itself. Great theory EXCEPT the last thing we need is to boost our immune systems as that is the problem to begin with they are already boosted to extreme. It should be no suprise when they don't work.
Diet, exercise, heat cold tens and any other manner of natural helpers are fine.
I'd never criticise anyone for using opiads. But be informed Maintence is fine if you are dying or recovering from surgery or an acute injury. Any one telling you to do so for chronic pain has been out of med school too long. Other than that pain or not you will develop resistence and/or dpendence. A vaction is good every so often for lowering the levels is not a bad thing. There is always stadahl and a few other similar to get you through.
It s becoming ever increasingly difficult with the current climate to get and keep long term opiad pain control. Not a week goes by we don't get a new member of our pain group that has been cut off or flunked a new psych screen.
I believe that th Dr's have me on opiates is because 1) the negatives of the opiates outway the worse affect that my life would be without them. 2) when I am in serious and extreme pain my blood pressure shoots up to like 170/118ish. I think my Dr's figured some time ago that chronic pain is my "cross to bare" for the rest of my life. My pain management Dr. did mention the implanted electric stim. however I explained my reluctance to "going under the knife". He agreed and said that anytime your body is opened up anything can happen or enter in! So I guess each person and thier Dr. need to find what works best for that patient. Prayers and strength to all of ya!
Even after a short time, I find that if I take opioids I get a tolerance to them, so I do my best to keep them for sleep time during flares. Paracetamol is pointless, Ibuprofen does very little, so given the long term effects can be major, I rarely use it. Other NSAIDS are out, due to an allergic reaction to meloxicam. So really, I end up ramping steroids up and down. Not a great solution either as it’s like living on a roller coaster!
Like Lamb and Allan though, I actually find getting some exercise (which may just be limping for a short bit), particularly somewhere soothing for the soul, like the beach, has a major positive impact on how well I manage and respond to the pain. For example, I’m starting to hurt and get grumpy because it’s been raining, dark, and cold for two days! 
(and I live in a warm place - I don’t know how you guys in the cold wet climates cope)
Oh, I know you do not criticise anyone for use of opiods lamb, and I know that the young Docs or even the old neurologists are not fans. The nuerologist wanted me off ALL meds, started to reduce me from the Lyrica and Oxaprozin and the water at the Y kept getting colder and colder and I went through a total 'CRASH'! This was before Sjogren's showed up which was the first step to a diagnosis.
Why would you recommend a synthetic over a natural opiod? Any particular reason, just curious to know. I have an adverse reaction to codeine. That's a very bad scene, the injections became a cause of crashing as well. I am still entertaining the idea of having nerves cut for the stenosis, will surely put that far above the possibility of continuously burning them out at pain management. I also think the stimulator may be out too, just never could tolerate it, just irritates me and makes things so much worse. The more invasive the treatments or the tests and the worse I am, every time!
Yes, that is another factor BuickBoy, my BP has always been very good, just a tad low, and the pain can just sky rocket it! I am so very sorry you have RSD, BB, hope something can be done to relieve this, better yet, reverse it!
I think your comment about the affect of severe pain on your blood pressure emphasises how important it is to find a good treatment to reduce the inflammation and have good pain control. Bouts of increased severe pain has made my heart atrial fibrillate for a couple of years now and I watch my bp and heart very closely when I feel a flare is not being controlled. That's when opiates help get things back under control.
BuickBoy said:
I believe that th Dr's have me on opiates is because 1) the negatives of the opiates outway the worse affect that my life would be without them. 2) when I am in serious and extreme pain my blood pressure shoots up to like 170/118ish. I think my Dr's figured some time ago that chronic pain is my "cross to bare" for the rest of my life. My pain management Dr. did mention the implanted electric stim. however I explained my reluctance to "going under the knife". He agreed and said that anytime your body is opened up anything can happen or enter in! So I guess each person and thier Dr. need to find what works best for that patient. Prayers and strength to all of ya!
Allan, may I ask whick opiate you use? Do you prefer a natural to a synthetic and why.