Good morning all.

I am fairly new to "NeuroTalk" and I am looking for some input. I have already posted several times to the section on Peripheral Neuropathy & the Spine section.

Here is bridfly my story.

I have been thru 7 spine surgeries which includes surgery to implant and remove a spinal cord stimulator. I have severe cervical and lumbar issues and have had surgery where Harrington Rods were used. I still have spine issues and ongoing problems that include: weakness in my arms; radiating pain into my shoulders; numbness in legs; loss of balance issues; An EMG was done and showed severe nerve problems in my cervical and lumbar regions; severe arthritis in cervical and lumbar regions and neuropathy.

Other healh issues include; Type 2 diabetes; congenital absent left kidney; right kidney disease; surgery for a blood clot on my left leg and surgery for pancreatic cancer.

I started to see a new neurologist about 8 months ago or so. He started me on medication for pain management. Initially I was on Oxydodone and baclofen but was taken off of it because of side effects that didnt go away. I had trouble breathing and lightheadedness.

So I was put on Hydrocodone/Tyelenol 7.5-750 mg and can take a maximum of 6 tablets per day and Tizanidine 2 mg tablets where I take 3 tablets per day.

But here is what i noticed on the Rx. He put down a diagnosis of "Chronic Intractable Pain."

From what I saw when I googled it, it said basically that with all that is wrong there is no other treatmet options left. So does this mean just medicate me at this point that I am at the end of the road for finding any answers or treatment for what is wrong.

I'm finding that when I see him and the meds arent working the answer is just increase the medications. How long can you go on and just increasing the medications so that I can survive and function during the day?

I guess I am frustrated beyond belief at this point. I find it difficult getting thru the day without the medication. But on the medication I find it difficult as well due to side effects.

I guess I am just looking for input on what Chrong Intractable Pain is and how to deal with chronic pain when there may be no answers or treatment left.

Thanks for listening.

Allan

Hi Allan,

I do not believe so, though I think it's possible, from things you've mentioned in your posts, that you may not have the best doctor(s) for you. If I haven't mentioned it before, please download & read The Intractable Pain Patient's Handbook for Survival by Dr. Forest Tennant. (In fact, his definition of Intractable Pain may have been one of those you read.) Visiting his website and reading some of his other articles & publications might not be a bad idea either.

There are many good resources on the web for information about chronic pain and ways of dealing with/treating it. Some can be found in the Sticky Thread above, including some I just added. Some others I've found helpful/useful are:

Practical Pain Management
Pain Treatment Topics
and their respective links pages.

Everyone is different, and you have some complex conditions/factors, but theoretically, indefinitely. For some people, there comes a point (and they may reach that point repeatedly over time) when pain, and its alleviation, surpass side effects. Pain management, and medicating pain, are always questions of benefit vs. risk/side effects.

Pain medication is nothing to be feared or ashamed of. Many people are stigmatized for taking pain medications they need to function, and that's ignorant, illogical, reprehensible, and just plain wrong. Other kinds of patients are not stigmatized for taking other kinds of medications - only pain sufferers. People may argue that that's because there is so much abuse of pain medication, but the fact is that abuse among patients in chronic intractable pain with no history of abuse or psychological problems is extremely rare - less than 3%.

Chronic Pain Fact Sheet
http://www.cssa-inc.org/Articles/Chronic_Pain.htm
Materials Distributed at AAPS 9/18/2004 Briefing to Congress - "Politics of Pain"
http://www.aapsonline.org/painman/pbmaterials.htm

I get that. I really do, as I'm sure many other folks here do. For some people in chronic intractable pain, medication is the only way they can handle the pain, function, and have any quality of life at all. This isn't to say medication is the only solution - it isn't - but it is often one of last or near last resort when other treatments are ineffective.

We all deal with it... well, we find ways of dealing with it. What choice do we have? We do whatever we have to do. I deal with it one day at a time. I spend a good deal of my days distracting myself from the pain. I try to be involved in chronic pain awareness and advocacy. Other people find other ways, and I hope they'll join in with what they do to deal.

Doc

Hi Allan ~ I'm so sorry you're dealing with all those issues. It sure has been a rough road for you.

My diagnosis too is "chronic intractable pain." I've also had surgeries, implant & removal, and now I'm just on medications as surgery is no longer an option.

Have they ever suggested the Morphine pump to you? Or is that not an option? I'm concerned about long-term use of the Hydrocodone for you, as it has the "Tylenol" in it, which is VERY damaging to the liver when used long term. You should have a liver-panel test every 6 months to be sure the liver is working well and not being affected by the "Tylenol."

I just thought perhaps the Morphine pump might be an option for you. I had the trial for it, but the docs weren't thinking cause the stimulator was too big for me and tried to working itself OUT of me -- and the pump is even bigger than the stimulator, so i don't know why the tried it on me. LOL But it worked GREAT, darn it.

Are you not able to take any opiates at all, i.e. Methadone, MS Contin, etc.? They'd sure help with the pain.

I wish I knew what to suggest. I agree with Dr. Smith in that I'm not sure you have the best doctor in the world. I wish you the very best. God bless & take care. Hugs, Lee

I too have daily pain, at different levels and numbness. I tried different meds mostly OTC, but here in Oz you can get codeine/ Panadein without a script. The thing that works for me is hydrotherapy. Daily baths. Nice long ones and a spa/ jacuzzi whenever I can get it.

I also think you may consider a pain clinic. Your doc doesn't seem to get what you are feeling and that,s not right. If he can't help you, he should refer you to a pain management doctor/clinic.

Aussie

Thanks for the input.

Doc you mentioned a website about intractable pain by Dr. Forrest T. I think when I was first looking into intractable pain I came across the site, saved to read later, then quite honestly I forgot that I had it. Will read it and see what I can get as far as informationa after I've read it.

As to doctors, I started with the neurologist I think back in November or somewhere around that time. He was recommended, BUT quite honestly really have been questioning myself if he is the best doctor for me. So I will be looking for someone else.

I am limited on what medications I can take. I was born with one kidney and am in kidney failure. So taking NSAID I can't take as per my kidney doctor. So there is some limitation on my medications.

I had the spinal cord stimulator but didn't work for me. As to the Morphine pump Ive thought of it but didn't talk to the doctors about it. It sort of scared me being on the medication and not sure I can give you any explanation on why. None of my doctors mentioned the pump to me.

I am finding that my days are getting worse over time. Getting out of bed sometimes is a big task, getting up from a chair is a problem at times too. Overall I think I have been getting worse and that bothers me big time too.

Need to see who is on my insurance plan and make decisions on who to use. While I like my neurologist I am not sure that this is his area of expertise. so if I am thinking that then it is time to change.

will keep you posted and thanks for listening.

Allan

Allan, you might want to look into Lidoderm patches.

Applied to the spine, they may block some of the pain for you.
Application to the "sweet spot" may take a few days to find, because it is different for each person.

I used them originally for my meralgia paresthetica, and after 2 weeks the nerve stopped firing so much, and I had a remission.
Heat still can set it off some but not like it WAS, that is for sure.

I think I was on some patch years ago and had trouble with side effect. May have been fetanyl patch but cant remember.

Somehow I thought you had mentioned a pain management doctor. I agree that you really do need one given the complications; it could make a huge difference. Several of the links I posted previously have articles/help on finding good pain management doctors. Either your PCP or neurologist should provide you with a referral if you request it.

Doc

when I tried the morphine pump, the medication DID NOT get to my "head." It was explained to me that it only is bathing the nerves with the medication, and it doesn't get to the head, so there is no real side effects. Now, how true that is, I don't know. But I did NOT feel ANY side effects at all. All I know is that for the day that I had the trial, I didn't feel ANY pain at all!!! Unfortunately, like I said I couldn't have the pump.

The Lidoderm patches are only "topical" patches and do NOT get into the blood stream. So there should NOt be any side effects at all. I found that they didn't help my pain at all because they ARE topical. They didn't get deep enough to have any effect. The only problem you MIGHT have is with the adhesive that is used to keep the patch on. But they might be worth a try for you. Anything is worth trying at this point.

Wish I could help. God Bless Pebblebeach2 -- thanks for updating us. Hugs, Lee

Leesa is correct.... that is why I mentioned the "sweet spot".

There are little if any guidelines about placement. The manufacturer did not do studies on this, and many doctors are
clueless. I worked for several years at a large nursing home
medication provider, and we'd get calls all day long about "where to place the patch" etc. Doctors and nurses tend to be confused too.

One needs to have the nerve distribution understood from
anatomy illustrations to have effectiveness. And in some patients, they don't stick well, but there are tricks for that too.

I really like them. They have saved me from having to take
medications, with awful their side effects.

I'd also suggest using some ice packs on your spine at the levels where you know you have problems. Ice twice a day can be very effective too. I am doing that this week in fact for myself. Unless you have RSD.... ice is very good for turning off pain signals. I found HEAT very stimulating for myself. So I avoid that.

I think people give up on Lidoderms way too soon. In my case,
the nerve was so active I couldn't stand it... like 100 beestings all the time, etc. Some call MP pain like a lightning bolt, but that suggests it goes away for a while. Mine would stab me but remain like 100 beestings for hours. days... 14 days of Lidoderm and that stopped. I can feel twinges with it if I overdo it, like overextend my leg, or sit in a hot tub or sauna for 10min or more. But on a daily basis, my pain is in remission. It was nothing short of a miracle.