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Last week we saw a pain management specialist who, converse to most I have read about and the one other experience we had, went very in-depth with us (her appointment was at 12:45 and we did not get out of the appointment until 3pm). He said that Tasha's back is not 'fixable' (which we already knew since Tasha's neurologist had her most recent scans reviewed by a neurosurgeon) and that the condition her back is currently in is the best it will ever be. He told us that the two best options he could offer that he thought would help were either an epidural nerve stimulator or to stay with narcotics...adding a long-acting narcotic at night to help her get a good night's sleep.
Tasha does not want the stimulator because this would mean that she can no longer have MRIs which she will need periodically to monitor the condition of her syringomyelia, but she does not like the narcotics. She does not like the loopy, high feeling that she gets and she does not like the fact that he told us that she will likely have to gradually increase her dose to get the same level of pain management as her body gets accustomed to the drug.
Tasha was given a script for Toradol after her fall which does work really well, but the pharmacist told her that State law limits oral Toradol to something like 20 or so tablets in year due to possible adverse complications...so, needless to say, she does not take it unless she is in dire straights and the oxy has not cut her pain.
I had a friend that mentioned perhaps Tramadol would be better, but when I said something about this to Tasha's neurologist, she commented that it was not much better than a narcotic.
Is there nothing better for controlling long term chronic pain than to have to spend your life being doped up on narcotics?
Thanks for any insight or advice y'all have and thank you in advance for your replies. Tracy

You need to read up on the difference between dependence and addiction.
Your daughter needs to try the long acting pain meds. The side effects go away with time. I live on narcotics daily and never feel dopey because of them. That side effect went away a long, long time ago. Because my pain is controlled I'm able to live a productive life. I can't imagine not having that option.

I've lived with constant severe pain for more than 40 years. My degenerative disc disease began at age 17, with a horrific disc explosion. Age has nothing to do with how to treat someone in constant pain. With strong narcotic pain medication, I had a 30-year career that included administrative responsibilities at a major urban university. The same strong narcotics allow me to purse a successful writing career in retirement. Without strong narcotics, I would have decided to end my life many years ago. With them, I've had a lifetime of pleasure and success.
Would I rather be completely alert and in horrific pain? Or, would I rather deal with medication side effects and have far less pain? This is a no-brainer. GIVE ME THE NARCOTICS! Anyone who has been in constant severe pain would gladly take the drugs and be happy to deal with the side effects of feeling "drugged" for a while You should also know that those side effects almost always diminish over time. After 40 years of using strong narcotics, I now only feel less pain. The "drugged" feeling disappeared many years ago.
Tracy, you should know that the spinal cord stimulator and the intrathecal infusion pump have low success rates, particularly with patients who have had prior spine surgery. They require surgery to implant and to remove. And the surgery can itself create fibrosis (scar tissue) that can later impinge a spinal nerve root. Like spine surgery itself, these are last-resort options.
If your daughter has chronic severe pain, then there are many options she has not yet tried. Has she used Fentanyl Transdermal? Fentanyl is many times stronger than her Oxycodone. Fentanyl allowed me to work 9 years longer than I had imagined possible. I continue to use it with efficacious results in retirement.
Torodol and Tramadol are NOT narcotic pain medications. I would define them as "lame medications." They will rarely do the job of retaining severe pain. The feeling of being "doped up," virtually always dissipates over time. Anyone here who has used narcotics long-term will agree with this.
Oxycodone 5mg is a TINY dosage. I could eat them like candy and feel no relief. Give your daughter the narcotic medications that she requires to have a life. The side effects will dissipate. The alternative is to commit your daughter to a lifetime of constant severe pain.
A person with your daughter's condition can also try a corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), spinal cord stimulator, intrathecal infusion pump, off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation.
Do not deny your daughter the chance for a lifetime of happiness and success. Give her the medications that will help. Provide her with the treatments described above, available at a comprehensive pain management program. Tracy, if I were your daughter, I'd rather be "loopy" than paralyzed by severe pain.

Lori

Tramadol is listed as a non-narcotic in many drug books, but does cause withdrawal in many people when it has been used daily for a period of time, other people have no trouble going off of it. If 5 mg. of oxycodone makes your daughter feel loopy, then maybe tramadol 50-100 mg. is all she needs for pain right now. Tramadol is recommended for mild to moderate pain. Some folks find it works best if used on a set schedule every 6 hours, some people don't find it strong enough to help much at all. I've used it and I like it.
Some problems cannot be fixed, and it sounds like your daughter has some that cannot be fixed. In that case one must find out all her options and decide what to do next.
I personally believe that it is best to exhaust all the non-surgical options before going to a surgically implanted device for pain control. She should be aware that the loopy feeling you describe is often from too high a dose of opiates and/or goes away within a few weeks on the drugs on a regular basis. There are other drugs in addition to the short acting one she has tried. Long acting opiates often do not give one a loopy feeling as the medicine is released very slowly into ones system. I suggest she try whatever one the doctor suggested at night and see how she does. One copes so much better if one can sleep at night. She may want to try taking a long acting med both at night and in the daytime to avoid the loopy feeling the short acting meds can give us.
There are non-opiate meds like antidepressants or antiseizure meds that are often used for chronic pain that she might try. They mediate the neurotransmitters that carry the pain signals to our brains.
ALL drugs have some side effects for some people, but most go away with a bit of time, and if one med doesn't work there are others she might try.
I have been on narcotics for well over ten years on a daily basis, and have never felt doped up. They do make me able to function pretty well.
Best of luck to you both. She is lucky to have you researching things for her.
Take care, Annette


I'm sorry to hear about your daughter's medical problems and pain. My children are in their 20's, too, and nothing is harder than to see our children hurt. You are very good to be looking for answers for her. She is fortunate to have a mom like you.
I cannot say what medication might help your daughter, but like everyone says, most of the "loopy" stuff goes away with a little time. I was on too much Lyrica for a while and never got out of that stage but only because it was much too much. I do have to say, though, that I have ongoing issues with feeling "less sharp" and more forgetful on my medication. I don't know if this is part age, but I am able to detect that my mental capacities are diminished some. But, on the other hand, I am alive and I don't think I would be if not for the medication.
Many of us have had to come to terms with not being "fixable" physically and it is just plain lousy. I was feeling sorry for myself for a good while and still do sometimes. One of the things that has been most helpful for me was actually this board. I would like to suggest that you encourage your daughter to at least read it for a while if she is interested. It helped me so much to know that others did understand what it was to live with pain 24/7 and pain that really changed my life. I read on here a few days ago something that lifted me out of my self-pity that day. I have learned so many things about medications and treatments, too. Most of all for me it is just very comforting to not feel alone in my pain.
The last thing is that I think narcotic medications have a down side but at some point that down side is far outweighed by the relief and help that can come from medication. I see my medications as a big blessing. I believe they have saved my life. So, even though it might not seem perfect to you and your daughter right now, I think you might consider what a blessing they could possibly be in the future. And, that most people report that they do very well taking them.
I wish your daughter all the best as she walks through this. Take care, gail

Some doctors do not prescribe this medication out of concern for patient overdose, patients selling it on the streets or for fear of being on a DEA list. I can tell you that it has been a godsend for me, as well as many others within this forum. Used as directed it is completely safe and effective. Fentanyl gave me 9 extra years of work, when I thought it was impossible. Side effects are usually minimal and manageable.

I`m not so sure you can be totally alert when you are in intense pain . Your pain is overcoming you to the point you can`t think straight !!!



That's a very good point. I've struggled with the side effects of my meds for over a year but when the pain is cranked up high I can't do ANYTHING. It (the pain) makes it absolutely impossible for me to think or write or read, etc. The side effects have some impact on my concentration, memory, and alertness, but the pain screams so loud that there's no comparison on what is the worst. Glad you reminded us (me). Take care,
gail

Do your own research and take it to the kind doctor who is currently giving you the patches. If you run out early, or otherwise get yourself into trouble, he may stop prescribing them to you at all.
Take care, Annette

After using Fentanyl Transdermal for a few months, the "drugged" feeling disappeared completely. And, Fentanyl is the strongest pain medication available. Now, I only feel less pain. Tracy, many people dislike the feeling of losing control or the fuzzy cognition associated with narcotics. But it almost always disappears over time. It may be the only way to manage your daughter's pain. She just needs to get past the first few months.

jeanne
Some of these people reported being on strong narcotics for 40 years??? Call me crazy, but that sounds like an addict to me.
I have had joint issues since my early twenties...several knee surgeries, cervical spine surgeries, foot surgery, etc. The last surgery was a total knee replacement. I am farely young, 53, to have had knee surgery for no reason other than I was just born with crappy joints and cartilege that wore out way before it should have.
I was seeing a pain specialist for other issues before I went in for the replacement. She put me on the fentynal patch (50mg)
I am a teacher, so I continued to teach from a wheelchair before I had the surgery. I had my surgery a little over a year ago..I woke up in a panicked state, which had never occurred with the other surgeries. They slapped another patch on me as soon as I got into recovery.
I returned to teaching after three weeks..too early...with the patch. I wore the patch for the next four months. My orthopaedic surgeon did not want to get involved with my pain
management; he left that up to the pain specialist. Keep in mind that this pain specialist rarely saw me, but rather would tell her nurse what to tell me.
She weaned me down to 25 after a few months. I had bad withdrawls from that, but nothing compared for the hell I was about to encounter. After school ended, my husband and I got ready to move to another city...I was so weak, depressed, suffering severe insomnia. When my "pain specalist" learned that I was moving, she basically dropped me as a patient. She would not renew my prescription....so, you guessed it...I cold turkeyed the patch. I have given birth, and I can tell you that labor pains is a toothache compared to the SEVERE withdrawls from the fentynal patch...hot and cold sweats, insomnia ( didn't sleep for 3 days at a time), nausea, diarrhea...I would have welcomed death at that time.
It took at least a month for all the symptoms to dissapate, but I did spend two stints in the hospital for clinical depression.
It was easily one of the lowest points in my life.
I have since learned that going off the patch without medical assistance could be dangerous ( seizures) or worse ( death).
Right now I am on NO painkillers...I only take Celebrex, which helps very little. I had to take the year off from teaching because of my experience. I want to go back to teaching,but it seems that my knee device is lose, and I can either have another replacement, or "deal with it". The pain I deal with every day has ruined my quality of life.
I am in search of a painkiller that is non-narcotic and non-addictive. I would welcome any suggestions.
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