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Old 01-12-2006, 07:58 AM   #1
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Shore what is it called when you have....

Shoreline,

I know, if anyone, you will probaly know the answer to this. What is the med term for pain that is ingrained into your brain from having pain from the spine? Pain that you have had so long that your brain is used to receiving the signal. That may sound ignorant, but I don't know any other way to describe it. My neurosurgeon described this pain to me a long time ago and told me I had been having the pain so long that surgery might not relief it because of ..........?

Thanks,
Carol

 
Old 01-12-2006, 09:59 PM   #2
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Re: Shore what is it called when you have....

Are you looking for the med term? Phamtom Pain? Mink.

 
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Old 01-12-2006, 10:18 PM   #3
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Re: Shore what is it called when you have....

Phantom pain is actually a little different. The doc was talking about the gateway theory and pain imprinting. The pain signal when constant and poorly controlled becomes engrained into the nerve tissue, and the cascade of neuro-transmitters and biochemcial agents actually change in folks with Intractable chronic pain . Maybe he said Intractable. BUt I think this is likely what he was talking about.

The newer aproaches to treating chronic pain aren't deveolpoment of new opiates, they are still playing with the same ones they had 30-150 years ago, just changing the delivery.

The new aproach is to interups the change that has occured and stop a sort of domino effect caused when acute pain turns chronic. Some of the newer meds and off label uses target specifc things and block parts of the circle of biocemical releases and and neurotransmitters traveling in both directions rather than just one. This is wherer cone snail toxin comes in, Using intrathecal baclofen, Clonodine wether it's oral, patch or Intrathecal pump delivery, anti-seizure meds,antiD's, NMDA receptor blockers, combination opiate agonist/antagonist drugs. etc etc

This is where the newer info on how different chronic pain is from acute pain is leading research methods and adjunct therapies into blocking the cycle of chronic pain at more than just one point.

There is so much more to managing pain than simply prescribing an opiate pain killer once pain becomes chronic and engrained into the the nerve pathways.

Hope that was what you were talking about. Phantom pain is included in many of the gateway theory aspects but there is still an unexplained portion of phantom pain. They may never quite figure it out but will likely find a way to manage it. There are many meds that work on lots of probllems where the pharmokentics aren't fully understood, they just know it works.. So a cure is probably more likely to happen before they understand the entire process of phantom pain.
Take care, Dave

Last edited by Shoreline; 01-12-2006 at 10:29 PM.

 
Old 01-13-2006, 07:23 AM   #4
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Re: Shore what is it called when you have....

Thanks Dave, I don't remember phantom pain. I believe he said intractable.

Carol

 
Old 01-13-2006, 11:53 AM   #5
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Re: Shore what is it called when you have....

Hey carol,The med dictionary defines Intractable as, resistant to cure, relief or control.

Basically they do their best at controlling it but despitye what they do, all pain can't
be relied, That's where the 50% goal is considered good, managebele, takes the edge off, whatever you want to callit. It keeps me around. My pain has been DX as intractable for sevral years, My insurance won't pay for more PT, because it won't help. Regardless of how much opiate they give me, the longest I can stand is 20 minutes before my legs start shaking and bending and I break into a sweat and must lay down.

It's somehwat controllable, but it extremely tough to live with and except that this is as good as it gets.t's also tough to imagine stickng around another 30 years like this.

I know If I got a wheelchair I could get around easier , travel or take trips with my family, Even rolling through the mall or Busch gardens or the ocean front would be beter than this, it would basically make me more mobile. The down side is, I would loose the ability to stand or walk within months or for any length of time if I gave up on doing something extremely painful "standing and walking".

Most of the docs I see are surprised I'm not in a chair but I would defintely say I'm pretty much homebound the way things are now and several docs have offered to write me an RX for a chair and they know it would be covered. I'm just not ready to give up walking and being able to stand in the shower yet.

I do make trips to the grocery and pay for it dearly, I get to doc apts and the pharmacy, but other than that, It hurts to much to just go and walk through a mall or spend an hour at an outdoor picnic where there is nowhere to sit. I can get the housework done in little 10 minute spurts so I at least feel somewhat functional.

Although they calll my pain intractable, which is also part of the whole gateway theory, I do feel it's manageble to a degree but it does get harder and harder as things continue to deteriorate in my spine.Managing it to a degree is why they drill 50% relief in your head and what they shoot for with a pump trial or being satisfied with a pump. More drugs would probably relieve more pain, but I woldn't be able to stay awake and wouldn't care if I never left the house. So you have to stop when side effects start becomeing as hindering or more hindering than your diagnosis.

From what you have said about your meds, your certainly not anywhere near maxed out unless your at the point where you can't tolerate more side effects. Ideally if your conditionis stable, you can stay on the same dose and get relief from that dose for years. I did with meth but then hardware started failing and toggling, my spine shifted and they finaly got a good enough picture to realize only 10% of my entire lumbar spine actually fused this time around.

I don't know if anyone ever truly reaches a point where abslutely nothing touches the pain, but with the doses used you would think I would be pretty dang pain free. To get more relief, I would basically have to be drugged to the point you see folks right after surgery where they can't stay awake to hold a conversation and don't remeber you came and visited. That's not an exceptable way to live the rest of my life I had to learn and come to grips that this may be as good as it ever gets and things may get worse.

That's my long definition of Intractable and what life is like when you reach that point.
Good luck, Dave

 
Old 01-13-2006, 03:54 PM   #6
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Re: Shore what is it called when you have....

Hey Dave,

I appreciate your doing my homework for me. I hate hearing that you are in such pain. I kinda figured you would have to be after your telling me about the hardware and fusion not fused. Its tough. I used a wheelchair for a while but when I finally got the right meds I got out of it and lost the 100 lbs. I had gained. Ever since I began the quest for a good doc, I have gained a considerable amount of it back and thinking seriously about getting the old wheelchair out again. I use a cane but it hurts so to walk now the cane just helps to keep my balance when I get hit with one of those sharp pains and can't take another step for awhile. With the increased weight comes more pain. I was much better at 145 than 245. I am 5'10" or its probably more like 5'9" with the compressed discs. I know I will always have pain and not expecting a miracle, just want to be back at a level 5 on the ole chart. A 5 wasn't so bad after all.

Last night I had something I never had before. One of my dogs had to have an emergency bath. Didn't feel like it but had to do it. I used the toilet to sit on and bent down to reach her in the bathtub. When I raised up I had the usual pain and had wait a minute then walk slowly. After getting through with the dog I went to get in my recliner. I laid back and sort of on my side and my legs began to spasm. Both legs at the same time. Never had that before that I can remember.

Do you have problems with sitting and lying flat in a bed?

Take care of yourself,
Carol

Last edited by catnap; 01-13-2006 at 04:00 PM.

 
Old 01-13-2006, 11:22 PM   #7
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Re: Shore what is it called when you have....

Neuropathic Pain is when your nerve pathways are trained to send pain signals to your brain, regardless of whether there is any injury still there.

 
Old 01-14-2006, 06:39 AM   #8
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Re: Shore what is it called when you have....

Thanks dangovt,

I am thinking now that it might be neuropathic pain being what the neuro told me about. So there is such a thing and I didn't dream that.

Carol

 
Old 01-15-2006, 04:10 PM   #9
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Re: Shore what is it called when you have....

Quote:
Originally Posted by catnap
Shoreline,

I know, if anyone, you will probaly know the answer to this. What is the med term for pain that is ingrained into your brain from having pain from the spine? Pain that you have had so long that your brain is used to receiving the signal. That may sound ignorant, but I don't know any other way to describe it. My neurosurgeon described this pain to me a long time ago and told me I had been having the pain so long that surgery might not relief it because of ..........?

Thanks,
Carol

I have this. I woke up one night and then awoke my husband and told him, "I think that this is just a memory of the pain that I experienced from the injury, it is a memory, not actual pain".

When I saw the psych and the PM they told me the same thing without me telling them what I had thought. I was injured. My brain imprinted the pain. The injury was so traumatic for me that my body started guarding itself. Every door that slammed, every bump in the road, I tensed up, causing further pain.

I have tried every method of pain control that I knew or had access to. Finally, I have found someone who is directing me in a new way. I am going to try accupunture, then muscle retraining, to try to break the cycle of pain and to get rid of the imprint. Meantime, I had a therapy called EMDR that released the trauma. I no longer react to the stressors. This, in itself, has released a lot of my pain and opened up the way for me to work on this memory of the pain.

If you have old emotional traumas that are related to your injury, this might work for you. At first, I thought that it was hokus, pokus, but it did have validity and worked for me. I had to do a lot of research on it first, as it is emotionally invasive and on the cutting edge. And, it does not work for everyone. But, even law enforcement, as well as Vets recognize it as a valid therapy and are using it in Post Traumatic Stress Syndrome.

Most of us with pain, definitely have some stress due to insurance, WC, or any other billing related issues.

It was explained to me that our bodies are wired, much like a house or car is wired and when we have trauma, our bodies either short circuit or try to build new pathways to try to get around the pain. When a person is shot, they usually have enough chemicals released that they don't feel the pain. This is why the MD's work with chemicals to try to stop the pain. But, nuero pathways are also involved, as with stroke victims who have to relearn how to function. With pain, new pathways can be built and supposedly, we can learn to overcome the pain by building new pathways. (I am hoping that this works for me.)

Take care,

 
Old 01-15-2006, 04:59 PM   #10
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Re: Shore what is it called when you have....

moonlight,

I was wanting to know the term the neuro told me before surgery and could not remember. After reading up on intractable and neuropathic pain I have decided it was intractable.

I have disk herniations in the cervical, thoracic and lumbar areas, sceloresis, degenerative disk disease and a fusion of the lumbar that is not solid. Surgery did not fix me; only made me worse. With each diskectomy and fusion, another disk herniated and most of the disk that were "repaired" are still herniated or protruding.

I am glad to see that you found acupunture to help you.

Thanks,
Carol

 
Old 01-17-2006, 07:22 PM   #11
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Re: Shore what is it called when you have....

Carol, you are right, that is the word. That word scares me though. I want my pain to be gone as I am sure that you do also. I am giving this accupunture a try to try to rewire my body or move my chi or whatever else it does. I would try anything at this point.

Is intractable pain curable?

We were discussing this just today at the doctor's office. My husband had surgery on his foot. His foot has full movement back after a reconstruction job, but the pain is worse than before the surgery. I asked about it, but the doctor hedged around it. He told him to use more ice. I sure hope that there is a cure for our pain. We are both in a lot of pain and with no real cures in sight. And, both of us being past addicts, can't use narcotics.

What do they do when they run out of modalities??????

 
Old 01-18-2006, 03:13 AM   #12
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Re: Shore what is it called when you have....

Moonlight,

I am sorry you and your husband are both living in pain. How long has it been since his surgery? I don't think intractable pain can be cure. But it can be treated. For the lot of us the only success treatment is medication.

After being in pm for about 8 yearsand being shuffled around to other docs it is still frustrating. When I began pm I was sent to a pm/spine surgeon. He put me on Duragesic and it worked great. I had gained up to about 100 lbs. after the 3 spine surgeries and lost it all. This doc decided to cut his pain patients loose after his spine surgeries became a booming business. I was then sent to a psych/pm doc. After seeing him for about 5 yrs., he closed his practice for financial reasons. Now I see a pm doc who thinks 320 mgs. morphine is a very high dose (me being the only patient taking that high of a dose) with a pa who cannot count to save his life. I got into an argument with the pa. He believed he was right and I was just stupid not to see it his way. He would just talk over me not letting me get a word in. The doc gave me an increase in my meds. The pa said just start taking 4 a day after 2 days and you will have enough to last you until your next appt on the 31st. I cannot do math in my head and counted when I got home. This pa obviously cannot do math either. Anyway it was so frustrating. By his counting I should have pills left over on the 31st. No way. I can't start taking the increase until after 5 days to have enough to last until the 31st. He said his math was precise. Crap. I was going to send him a fax with it written down but I just let it go.

I was getting along good before seeing this doc. They put me into withdrawal the first week. I know I should have changed docs before now. To see a good doc means I have to make a round trip to Dallas (4 hrs.). After making the road trip for the last 8 years, I am just tired of it. I wanted so badly to find someone closer.

Yesterday at my visit the doc suggested a spinal cord stimulator. He told me all it involved was a needle inserting a tiny device, all to be done in the office. Not true. This procedure is only the trial. The permanent device is a major surgery. I have had 19 major surgeries and now have a phobia about hospitals and surgeries. I am not going to have another invasive procedure done especially with my spine. It doesn't have a high enough success rate especially for someone 10 years post op.

I have been treated successfully enough with meds and want to continue with the meds. I just need to find a good doc who is not afraid of writing a script. I don't understand this doc being in pm who is afraid of the DEA. Today, I am going to mail my records to another doc for his review before I get an appointment. I hope this will keep me from making another wasted trip.

I have read that addicts can and are treated successfully with narcotics. But only under strict supervision, med counts, urine tests and other means of control. There are docs that will work with cp patients that have an abuse problem. A true addict takes pills in a destructive manner, only to get a high, without any other regard.

When it all comes down to all of the modalities working, some do for some people and some don't. You just have to keep trying to find the one that works. But I would be very hesitant to try anything involving a surgery, especially when it is still new and doesn't have a very high success rate.

Be careful and get yourself educated on anything a doc suggests to you.

Carol

Last edited by catnap; 01-18-2006 at 03:34 AM.

 
Old 01-21-2006, 04:04 PM   #13
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Re: Shore what is it called when you have....

Catnap,
Thanks for your reply.

I just don't want to believe that this pain will never go away and that there is no cure. I too, have been down every road. Each and every doc ends up handing me a script for pain meds. When they do, I move on. They just don't work for me. Well, they take the edge off, but I have already been an addict and my body rebels. I was a seconal addict way back when.

I had surgery to remove some cysts that were causing pain but the pain is back. Next stop, accupunture. I have one of the country's top pain management guys, now. I just wish that they would find the source of my pain.

My husband is a whole other story. He too, has been an addict, but his was to opiates. He knew, with this foot surgery, he could not go there. But, we also, like with me, can't figure out what is causing his pain.

I know that the docs think that we are looking for pain meds but I have a drawer full of them. If I thought that they would work, they would be gone. I have tried different combinations of them, doubled and tripled the dosages, but still no relief from the pain. One doctor looked at me after a morphine shot and said, "If I give you any more, I would kill you". Still, no relief.

I am beginning to question my sanity.


 
Old 01-21-2006, 07:16 PM   #14
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Re: Shore what is it called when you have....

Moonlight,

Have you ever tried Arthrotec? It is not narcotic. It's a NSAID. They work fairly good, but I cannot take the NSAIDS because of stomach problems.

You sound really depressed. Depression and stress can make the pain worse. Have you been to see a psychiatric/pain management doc? I am not suggesting that you and your husband need psychiatric help. These guys just have a little more knowledge about pain med combos and dealing with the depression. My good doc was a psych/pm.

I am really at a loss here and don't know what to else to suggest. But if I come up with something I will let you know.

I am thinking of you both and hope you find some relief.

Carol

Last edited by catnap; 01-21-2006 at 07:20 PM.

 
Old 01-21-2006, 07:32 PM   #15
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Re: Shore what is it called when you have....

Catnap:

Neither he nor I can take anti-inflammatory meds. His stomach is already bad, can't even eat onions or garlic. Makes him sick. He takes Nexium and eats blandly. I only had stomach problems when taking the anti-inflammatory meds. I can't even take Advil and not get sick.

They tried the anti-inflammatory pack on me but it ate my stomach and then I had to take another pack of something for my stomach.

I saw a psychiatrist a couple of weeks ago. She found me to be well adjusted. I agree, we should be depressed, but we are not so much depressed as tired. Pain takes a toll. I am used to being an up, happy, person. The doc didn't even suggest anti-depressants. I thought for sure that she would. As for my husband, he is a really jolly guy, always laughing. He is so up, pain and all, he went back to work as soon as they would let him. He even works overtime.

Tomorrow I will get out for a walk. It has been snowing here, so no walking. Walking doesn't take away the pain, but it does work as a distraction. The PM told me that there are two kinds of people, those who meditate for the pain and those who use distraction. I use distraction. Meditation only made it worse for me. So, snow or not, a walk it will be.

 
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