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I'm starting this post to see if there are similarities among us regarding medications, physical therapy, creative activities, etc. that help us deal with or actually control our pain.
~Lisa H.
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I have an implanted pain pump that automatically delivers a small dose of Dilaudid directly to my spine, which is then carried through-out my body - this has been a miracle worker for me and has changed my life! I'm also on the oral pain medications Dilaudid & Endocet as well as the muscle relaxer Valium. The hope is that soon we will have the pump putting enough Dilaudid into my spine that I won't have to take any more oral medications - YAY!
As far an non-medicinal pain relief (or distractions, as I call them), my activities include crafts and jewelry making, starting an online business, as well as planning future "brick and mortar" businesses. These things all keep my mind off of the pain, which helps a little.
~Lisa H.
~Lisa H.
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I have an implanted pain pump that automatically delivers a small dose of Dilaudid directly to my spine, which is then carried through-out my body - this has been a miracle worker for me and has changed my life! I'm also on the oral pain medications Dilaudid & Endocet as well as the muscle relaxer Valium. The hope is that soon we will have the pump putting enough Dilaudid into my spine that I won't have to take any more oral medications - YAY!
As far an non-medicinal pain relief (or distractions, as I call them), my activities include crafts and jewelry making, starting an online business, as well as planning future "brick and mortar" businesses. These things all keep my mind off of the pain, which helps a little.
~Lisa H.
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Maryland
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Re: What's Working for You?
Mon, March 23, 2009 - 11:59 PMHi Lisa. Do you find your bipolar meds interact with your pain meds?
I worry about this sometimes. -
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Re: What's Working for You?
Tue, March 24, 2009 - 2:45 AMHi Ian!
Before starting any new medications, they're verified with both my pain specialist and my psychiatrist. If you would like a full list of my medications so you can know what's working well together for me, I'd be happy to list them out for you. Just let me know!
*hugs*
~Lisa -
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Re: What's Working for You?
Tue, March 24, 2009 - 2:09 PMI take medication for depression, and all of my pain meds have to be okayed by my psychiatrist.
I still worry about interactions.
I've had to give up my migraine medication because of the possibility of serotonin poisoning, and that's really rough. Opiates don't work on migraines.
I have fibromyalgia, so fortunately my antidepressants are often prescribed for that as well. I'm taking Cymbalta now, and find it helps with anxiety as well as pain.
I also take B-12 shots because I feel they sort of replenish what the pain depletes, and ease the fatigue.
I have one of those WiiFit things and do the yoga and balance exercises when I can. I'm also a fan of acupuncture, but it can be so expensive. -
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Re: What's Working for You?
Tue, March 24, 2009 - 11:43 PMHi Lisa. I'm just curious in general.
I take Seroquel, Klonopin and Lamictal for bipolar. Percocet, Tegretal and Arthrocet for pain from surgery damage to my trigeminal nerve.
It's tiring. Like I have to tell you.
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Re: What's Working for You?
Wed, March 25, 2009 - 6:11 AMIt's all about distraction for me. Unfortunately I'm one of the few who actually did have an addiction problem with pain meds. So, I just find something that requires alot of focus and try to immerse myself in it. Sometimes, I just feel the pain and endure it, because it makes me feel like a warrior or something. Then, I smoke a bowl when it all gets to be just too much.
Letting out the anger and the sadness at being this way is really important for me. When I can let it out in words or music or drawings, I feel physically better somehow.
Nice topic, Lisa. -
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Re: What's Working for You?
Wed, March 25, 2009 - 9:34 PMI'm scared of all of the pain drugs--or humbled?
because I've no choice, the pain is so horrific, so brain-frying I have no choice but to take them. I'm literally dependent on all of them.
On the other hand, I'm humbled because they help. Tonight I was watching Tv with my wife and suddenly ZZPPPTTT! Breakthrough pain.
I'd taken my other meds so I took 12 mg of Percocet. But it takes about 40 minutes for them to kick in.
So I put on the IPod and cranked some extreme heavy metal. I also owe extreme heavy metal my life--it's so loud, aggresive and covers so many frequencies it sort of shorts out my brain's data-coping mechanisms and thank God for that.
The time passes. the Percocet shuts off the switch and I sort of slump over, human again.
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Re: What's Working for You?
Wed, March 25, 2009 - 9:38 PMWhat I'm wondering:
It's really hard remembering to take the Percocet every five hours. I asked my pain management doctor about long-acting opaites and he was sorta against it for reasons that weren't all that clear to me. I mean, he said they take longer to take effects but the Percocet don't exactly zoom in either.
And I'm a little leery about the Trileptal. I mean, I already take all this stuff for bipolar and now I'm taking something for pain that's also for bipolar and I'm wondering if this is overkill.
Guess I should call my psyciatrist--maybe I could get off the mood stabilizer since Trileptal is supposed to do that as well?
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Re: What's Working for You?
Thu, March 26, 2009 - 3:38 AMI'd check with the psychiatrist.
It could also be that the drugs all work better together. You never know . . . -
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Re: What's Working for You?
Sun, April 5, 2009 - 3:40 AM>>>I'd check with the psychiatrist.
It could also be that the drugs all work better together. You never know . . . <<<<
Actually, you would probably get better information from a pharmacist. They know meds and only meds. MDs and psychiatrists can be limited to what they know and sadly may be influenced by the drug sales reps. Most doctors that I know stick with the brands they know and are not always up-to-date on the latest research and studies. Not that they are bad doctors, but they just can't know everything, whereas a pharmacist must keep up on every kind of drug, interactions and the latest information.
There is also the fact that each and every one of us has slightly different body chemistry, plus there can be odd interactions with different foods and herbal supplements. For myself, I have a terrible reaction to morphine or any opiate-based meds, but I'm okay with the artificial kind. And, sadly, there is no way to know in advance. It is just trial and error when you get down to it.
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Re: What's Working for You?
Fri, March 27, 2009 - 9:34 AMIan, it seems very strange to me that your doctor would prefer to give you short-term pain meds over long-term. Is he older and perhaps not aware of the latest information? I don't want to insult him or anything. I also sympathize with just how much information is out there and how hard it is for one doctor to be on top of all of it. But really, there are many benefits to the long-term route.
First, with short-term, there is the fact that you have to remember to take them to avoid breakthrough pain. Contrary to what many believe, pain meds work best if you take them before the pain gets very intense.
Second, there is the general idea that short-term pills are more likely to lead to dependence and abuse. The slow-acting form does not give one the happy high that can be a temptation to take more often or when not needed.
These days, there is even a trend to give Methodone as pain relief because it is so slow-acting and doesn't give the high. Although sadly, there was a tragedy in my area at a group home for troubled teens where two kids managed to steal the methadone from one of the nurses who had a back injury. They took the pills and when they didn't get high, they just kept taking more. One died and the other suffered serious brain damage. Very sad.
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Re: What's Working for You?
Sun, May 3, 2009 - 7:45 PM"Letting out the anger and the sadness at being this way".........that phrase just caught my eye and it snagged my mind. That just perfectly describes what I am feeling. I know exactly what you are going through! It is SO difficult to pull my mind away from those feelings of injustice because I don't have some kind of control over what my body is feeling other than dosing myself with meds. It is that old "why me" syndrome which drags me down into self-pity if I let it take me there.
It just seems that mutual support is the only thing that really helps. That and focusing on anything else.
Thank you for the post
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Re: What's Working for You?
Fri, March 27, 2009 - 4:39 AMHello all!
Lets try to keep this topic as positive as possible and as close to the topic as well. I can understand that it's very easy to worry about just about anything; however, worrying gets you nowhere. Simply to the appropriate research and you should be just fine.
For those of you that are curious, here is exactly what I'm taking (and it's A LOT!)...
(Format: Name - dosage - times per day -reason for taking)
MENTAL DISORDER PRESCRIPTIONS
Abilify - 10mg - 1x/day - BiPolar
Cymbalta - 60mg - 2x/day - BiPolar/Depression
PHYSICAL DISORDERS PRESCRIPTIONS
Lopressor - 50mg - 2x/day - Dysautonomia
Valuim - 1mg - 2x/day - Muscle Relazer
Proamatine - 10mg - 2x/day - P.O.T.S
Protonix - 40mg - 2x/day - Hiatal Hernia
Endocet - 10mg/325mg - 3x/day - Pain from EDS
Dilaudid - 4mg - 2x/day - Pain from EDS
NON-PRESCRIPTION SUPPLEMENTS
Calcium+D - 1x/day - Bone Supplement
Sennacot - 1x/day - Laxative
Dulcolax - 2x/day - Laxative
Multivitamin - 1x/day - General Supplement
Collagen+C - 2x/day - EDS Collagen Suppliment
That list does not contain the pain medication delivered directly to my spine from my intrathecal pump, the occational oral NSAIDs, or random cold medications, but you get the idea.
If anyone has any questions, please don't hesitate to ask, but remember I'm NOT a doctor, simply someone who has been disabled for a long time.
Best regards to EVERYONE!!!
*HUGS*
~Lisa Hazell
www.venusdesigns.artfire.com -
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Re: What's Working for You?
Fri, March 27, 2009 - 1:39 PMThat many percocets mean you could be placed on a low dose oxycontin no problem and get longer lasting relief. Fire your pain doc and get anotherone who will prescribe it. -
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Re: What's Working for You?
Sat, March 28, 2009 - 8:09 PMWe've tried long-acting pain medication, but for some reason it doesn't have any effect on me. I can only go with immediate action pain meds. There is NO WAY I'd fire my pain doc, his given me back a major part of my life! -
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Re: What's Working for You?
Sat, March 28, 2009 - 8:41 PM>there is the fact that you have to remember to take them to avoid breakthrough pain
Tell me about it!
My doctor is widely considered one of New York City's finest neurologist. he's of the opinion that short-term Percocet is the ticket--his explanation made sense when he made it, buit I'm lacking the science to replicate it here myself.
I'm finding I have to ramp up on the Trileptal very slowly--and faster and I get these weird, diassociative spells that really suck. -
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Re: What's Working for You?
Sat, March 28, 2009 - 9:02 PMHi Ian!
So you're in New York?! I may be traveling to Manhattan shortly to have a second, and possibly a third, medication added to my intrathecal pump. Unfortunately they are unable to add multiple medications to my pump here in Maryland.
I may have asked you this already, but have you considered an intrathecal pain pump? It's been a miracle worker for me and has changed my life so much!
~Lisa -
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Re: What's Working for You?
Sat, April 4, 2009 - 11:52 PMI was fortunate enough to have my boyfriend massage every inch of my skin from head to toe with jojoba oil tonight, including my incision and wound area. What amazing comfort. -
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Re: What's Working for You?
Fri, April 10, 2009 - 1:07 PMAh, there's the rub (sorry.)
I have a new symptom and it's hellish beyond the telling.
The skin of my neck now feels like boiling oil is being poured on it.
Point is, my wife came home last night and tried to hug me and I nearly flew through the ceiling.
My EEG shows some sketchy stuff--doc thinks it may just be what a brain looks like in insane pain. getting MRI next week, got blood work done in case of some underlying condition--he doesn't think that's the case,. but never hurts to be careful, so to speak.
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Re: What's Working for You?
Fri, April 10, 2009 - 4:18 PMSorry bud. Have you been to any alternative healer or energy worker? -
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This is the maximum depth. Additional responses will not be threaded.
Re: What's Working for You?
Fri, April 10, 2009 - 10:50 PMNo. This seems kinda too over-the-top hardcore, not that I know much about such things, energy healing and the like.
Wearing me the fuck out.
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