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Old 03-22-2009, 07:34 PM   #1
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My pain doctor phone call

She called me back, my pain doctor, to talk to me about my treatment plan and why she doesn't think we need to re-evaluate the exercise plan.
I hadn't understood what she meant by getting 10-15 minutes of walking per day, she didn't mean to get that much exercise if I can, or to limit it to that much; she meant to add that much to the regular walking I do while doing housework and running errands. I start my walking like this today.
I also asked her why I could not be medicated using control methods, or even just medicated every week just for a day; and the reason is down to my being hyper-sensitive to pain and she says it is due to being over-medicated before (with opiate medication) and that it will take about 6 months of no opiate medication whatsoever for me to feel normal pain again.
She urged me to stick with it, and said that she knows it is hard, she has had chronic pain, and that if I also stay at hydrotherapy and keep seeing physio, psychologist and drug counsellor, I will feel better from that, too.

I do have terrible pain some days, and some days I have no pain at all for hours on end. My son has been having some tantrum free days occasionally, which could be due to him getting older (he is 4) or my pain letting up every now and then (when it used to be constant); either way it is a blessing.

I'm struggling some days, I really am; but at least now I have an excellent bed and pillow to save my neck and back. I'm also thinking of getting a 'zero gravity' chair (I tried out inversion tables and I am not comfortable off the ground upside down!)...I will have to save up for a while but it's something to work towards - to be able to sit comfortably.

 
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Old 03-22-2009, 11:53 PM   #2
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Re: My pain doctor phone call

What your doctor is talking about is called Opioid-induced hyperalgesia or opioid-induced abnormal pain sensitivity which is still somewhat of a theory and not proven. Some doctors believe it to happen in a small percentage of individuals treated with opiod/opiates. What basically happens is that you are treated with pain meds(opiod/opiates) and then experience more pain and require more pain meds which seem to be making the pain worse and not better. Therefore your brain keeps telling you that you just need more pain meds. However, when you come off of all the pain meds and see a BIG reduction in pain then you have a pretty good indication that is what was happening. However if you come off all the pain meds, and after 2 weeks your pain is no better then the hyperalgesia was not happening. You probably did not have the right medication or combination of medications to treat your pain effectively.

There is alot of debate about whether this even occurs at all. I think that it does happen but in a minority of CP patients. Now the doctor telling you that it takes 6 months to tell sounds pretty far fetched. You should be able to tell after 2 weeks and definitely in a month. The reason it takes this long is due to rebound pain. It occurs when opiate/opiods are discontinued and then the pain will be very bad for 1-2 weeks(because your brain wants the opiates and it is trying to trick you to take them basically). After 2 weeks the pain should greatly diminish. So how long have you been off the medications? Or are you still taking some? let us know how you are progressing

brian

 
Old 03-23-2009, 01:08 AM   #3
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Re: My pain doctor phone call

hi brian
well, i mustn't be very clear, sorry. i don't take anything except for nortriptiline, celebrex, and panadol. i haven't had anything since 10 november 08 when i went in to detox from methadone.
what the pain doctor is saying about my pain levels perhaps relates to my pain going away or diminishing to a point where it might as well be gone? i am still not sure, and i don't feel comfortable with it because she is saying that it is ok i have been in such pain untreated for five months now and that i should go another 6 before it will die down.
i watched a tv show on cosmetic surgery this morning, and i was very angry about it, because these patients were healthy and chose to go have surgery to look a particular way, and yet they were still given pain relief like there was no tomorrow, and the doctors were so concerned for them, asking "Are the pain meds helping or do you want more?" - these sorts of things infuriate me, obviously it leads to me thinking "What about me?"

and you know, i am pretty sure i am one of those people who do suffer the hyper-sensitivity due to opiate medication...because my pain just went up and up and up, until i was so highly sedated i was having car accidents, and i do not have much memory of that chunk of my life. i was fine while detoxing, and i was fine when i got home, until maybe a week later (after 3 weeks off methadone) when the pain returned. so i did experience a sudden drop of medication (to nil) and a matching sudden drop of pain, but i'm not sure if the rise in pain levels after that says anything. it probably just suggests i have muscular/skeletal damage still. of course i do!

but she does have a lot of confidence that if i do everything i am supposed to, i will recover well and there is no reason i can't have another child (though i have a feeling she wants me to put it off another year or so because her and the physio are dead set on me recovering strength in my core muscles and i am just going to go back to square one again if i get pregnant and put my body under that sort of stress before i am well)

i am not handling any of it very well, though, even if i do say so myself. i am coping enough to get my kids fed and off to school with their hair brushed, teeth too, and their lunch most days, and so at least i am keeping up the motherhood thing...i am not keeping up the care of me thing, as after all the motherhood stuff, i am exhausted. absolutely exhausted. and sore. i don't want to go for a walk after all that. but i guess i have to

 
Old 03-23-2009, 01:49 AM   #4
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Re: My pain doctor phone call

Quote:
Originally Posted by Sorespine View Post
i watched a tv show on cosmetic surgery this morning, and i was very angry about it, because these patients were healthy and chose to go have surgery to look a particular way, and yet they were still given pain relief like there was no tomorrow, and the doctors were so concerned for them, asking "Are the pain meds helping or do you want more?" - these sorts of things infuriate me, obviously it leads to me thinking "What about me?"
OMG... yes..

and I know several losers that frequent the hospitals for their fix (AND GET IT EVERYTIME) and then there are the ones who get it regularly from their Dr and instead of taking it because they need it (which they dont), they just sell them to make rent -or vacation. Then there's me, who's tired of being in pain and decides to mention it and is treated like a f**n addict (so far from true). I keep saying Im ready to buy from them and dodge the Drs all together but I keep trudging on day by day IN PAIN.

 
Old 03-23-2009, 02:46 PM   #5
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Re: My pain doctor phone call

I understand everything you said Sorespine. I see the doctor's point about staying off the meds etc. I think 6 months is a long time though. The Dr. seems at least like she has a plan and is not just saying no meds, exercise. She has a certain theory. I just hate seeing anyone in pain when there is something that can be done about it. At least a small millogram of pain meds per day. Really the only way would be to have someone give you the exact dose per day to keep it on tract. Not a realistic plan though. I'm not saying you would abuse them. I'm just thinking of an alternative plan.

I know myself that I can go hours without taking my meds or I am watching the clock waiting for the 4 hour mark to take the next dose. It all depends how I slept or if the weather changes etc.

I don't remember if you had surgery or exactly what your injuries are. Pregnancy is so rough on the body. I would assume you would need alot of bed rest etc. Have you discussed with your GYN? Just curious. Over the years I wish I was able to have a second child. It just was not in the cards. With all my GYN problems, back problems and meds I take for pain and Narcolepsy I could not do anyway. Plus the first delivery scared me to death because emergency cesearean and he almost did not make it. Spent 17 days in neo natal. Best day of my life but the scariest thing I think I will ever have gone through. But that is a long story for another forum. My son was 10 1/2 pounds and 22 inches long. The Neurosurgeon said that the slipped vertabrae was probably from the pregnancy, being obese most of my adult life, posture, genetics. Everything puts wear and tear on the spine.

Good luck with your medical plan. I think having a positive attitude is half the battle. You sound like you are willing to give it a try. So, hope you are feeling better.

 
Old 03-24-2009, 01:00 AM   #6
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Re: My pain doctor phone call

Hey there, it sounds like she wants to manage pain in the way that every pm would 'like' to manage it...and how we all wish that it really was. For physical therapy, exercise and psychology to work alone, a persons pain must not be that high - I can manage with no pain relief if my pain is around a 2 or 3, so long as I exercise and keep well etc. Otherwise I would just go mental - this is how I was managed to start with and it got to the point where I just didn't want to live anymore. I didn't realise that cp was manageable with the right pain medication, exercise and some cbt or other psychological support.
May I ask what level of pain you would say yours is at out of 10? Do you think you can last 6 months? At least if you do have to see someone else, they will see how compliant you are and the lengths you will go to to be pain free without opiates. Look how far you've come already - attitude, exercise, hope, new bed. I know some days are hard but you're doing great.

 
Old 03-24-2009, 06:09 AM   #7
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Re: My pain doctor phone call

that's the thing i get so upset about. my pain level is too high too often to be controlled this way, with no relief for six months. given, i have come five months (three with the new pain) already, perhaps i can physically do it since i have almost done 6 already. but it is not fair!

my pain goes down to 0 sometimes now, it did go completely for one day nearly just the other day; and last week i had a morning of pain freedom, perhaps three hours or something.

it is usually in my legs, buttocks, back, sometimes crotch which is just this awful pressure and i don't know what that is but the pm seemed to recognise it as something that would go along with my other symptoms, and when i sneeze but not so much when i cough (but i have no weakness or leaking or anything), and in my hips, oh and my neck.

it hurts when i walk, sit, stand, and sometimes laying too.

the pain on most days is at lowest at around 2, usually 3 is common. it will rise to 6 and sometimes 7 and 8, and depending on my level of activity or sometimes just what side of the bed i get up on (ie: random?), it can just stay that way for the rest of the day. or sometimes when i change position (lay down/take a bath are my only options for relieving it), it will go back to 2, if i'm really lucky it will climb back to nil one of these days - it has only happened twice since I got the pain back after detox but it's great.

i have to ask my kids to walk carefully on our floorboard floors because the vibrations hurt too much, my husband can't touch my skin when my pain is high (most times), we don't usually have sex because of my pain or we'll try and have to stop, and i don't have a social life because every minute i'm not exercising at physio or doing my tummy muscle exercises in front of the tv or doing chores with maximum amount of squats around the house; i am lying down, watching tv, or occasionally i will lay down and color in with my kids or build lego buildings or do crosswords.

i just feel like it's a really long time, and i know i'm complaining, but i challenge anyone out there who's healthy to live with this and not wake up grumpy and be whiny and whingy. oh, i do sleep though. i know some of you don't get a great night's sleep and are woken with pain; i am not woken with pain, and i sleep well; i just take a very long time getting to sleep as i'm never comfortable when i lay to rest. it can take hours for me to fall asleep, simply because my pain seems to accumulate over the day, and is always worst at night, and i lay there desperately trying to get more comfortable, and i think eventually i just pass out from the sedative effect of the nortriptiline. i have a hard time waking in the morning from my late nights and sedation. i never feel like i've slept enough unless i get to sleep in until 9am which is almost never. my discomfort at night usually isn't due to sciatica or leg pain, usually it is simply back spasm. nobody will give me muscle relaxants.

and guess what? i got a letter from the minister for health, saying that doctors need to apply personally to the CEO of the health department, for authorisation to prescribe schedule 8 drugs. they are then given instructions on how to control eg: no repeats, pick up every week or every day etc. - he suggested that what probably happened with my case was due to moving and finding a new local doctor, not due to doctor shopping allegations but because the new doctors refused to believe i was addicted to these medications and was previously prescribed them, and because the health department didn't inform me of what would happen to me if i did not go back to my old doctor to have my authorisation renewed; and he suggested that it seemed that my authorisation simply ran out and none of the new gps at my new doctors' surgery were going to request authorisation...and that was it? i am still awaiting two requested freedom of information notes' - from the health department itself, which should tell me the exact nature of what happened unless it is censored *please don't let it be censored* and one from the first pain clinic.

If i get proof of my innocence i will take it to my pain doctor so she knows it wasn't my wrongdoing, and i know she won't medicate me because i'm a hypersensitive patient and a recovering addict and that pretty much rules me out no matter how good i am...but i want her to know i did nothing wrong.

I also want to shove it in the faces of those GPs who refused to treat me at the new doctors' surgery. See? I'm innocent like I said I was.

rant over! (sorry for length thanks for staying with me!)

 
Old 03-24-2009, 03:26 PM   #8
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Re: My pain doctor phone call

Sorespine, you can rant anytime. We all do.

It feels good when you finally get proof that you are right.

I think the problem with alot of doctors are that they try to treat patients like they are all the same. Everyone is different and should be treated differently. That is what the doctors have to realize. I am lucky that I have a doctor the actually gets it. He is great.

So just want to say that I hope you get the relief you need. Feel better.

 
Old 03-25-2009, 07:20 AM   #9
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Re: My pain doctor phone call

Rant away mate, that's what we're here for. It sounds like you don't feel like you should be prescribed narcotics because of pain sensitivity? Am I understanding what you mean? Pain sensitivity is real - but not 6 months after narcotics have been ceased. There are lots of websites that can probably answer these issues better than me. I just think that she shouldn't rule you out for all schedule 8s because of pain sensitivity - why not try you on different meds. Anyway, that doesn't help you for the moment. Perhaps when you get all your notes you can present to a new dr. Your suffering is unfair to you and your family. I wish I could send you some chocolate - sounds like you could use some. Take care.

 
Old 03-29-2009, 07:33 AM   #10
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Re: My pain doctor phone call

I dont blame you for wanting to show those GPs, thats just so unfair. I am really hoping you get those letters soon. I would send a copy & a letter to each of them & let them know how you have suffered so. Then I would conclude the letters with hope this does not happen to someone else in their care. Sammy

 
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