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How I feel of pain management
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bonniez45 posted:
I have blown disks that blew from the inside out, sjgroens,lupus, nueropathic leg pain and of course last but, not least fibromyalgia. I started off with Elavil no good bad reaction. Methadone no good bad reaction hydrocodone wasn't touching it fentynal because body temp goes up and down no way was I getting proper dosage at correct times and I was at 125 mcg and never lasted the 72 hrs never mind the 12 hrs it took to kick in took 6 months of weaning still had a stroke from withdrawls. Now for the last year and a half I have been on Oxycotin 80 mgs 5x a day. I can now function barely use a cane no ups and downs like the fentynal I don't spend my time in my bed I am still limited on what I can do but the difference even with my limitations is amazing.
Now my Dr. that is prescribing me this dosage has only a small handful of pts. that he sees for pain management and he is almost 70 so you can see my concern I have been searching for another Dr that would be willing to take over when the time comes the reactions I have received because I am a long term pain patient and the dosage. Most Drs. have signed contracts with heavy emphasis on the mg per day that is to not exceed 200 or they will not take me at all due to narcotics and I have too many problems that exceed their time limits. I am now looking for Drs. 75 mi. from home and my husband and I have talked that there is a possibility that we might have leave our home and move if I have to go to far for medication. I have also done the injections but one of the medical works have told me also once you have to go over the 200 you automatically have to go to a pain clinic the UP clinics do not do narcotics and I can no longer have any more injections the pain clinic on the other state side want you off all narcotics and basically start you all over again but they still have a dosage they prefer not to go over.
I think of this and the pain in my back neck and shoulders that is into my legs that is a deep knawing pain to touch me is sending out currents of pain I start crying just the thought of that constant pain. I am not pain free I know this is the best I will be I can handle this but to go back to the way I was I sincerely do not think I could get thru it.
I have tried to talk to my congressman/woman who tried to find some thing in my area no luck part of this pain management is political and this is not going to change unless our state reps help what they are paid for find out in there healthcare views.
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cweinbl responded:

Sorry to hear about your pain, "bonnie." I've been in your situation for the past 15-20 years. Your complaints about Fentanyl are common. Temperature changes occur. The patch seems to last about 48 hours, not 72 hours. But I would disagree about your complains concerning "ups and downs." Because Fentanyl Transdermal maintains peak plasma level for at least 48 hours, it is the most consistent of all pain medications. "Ups and downs" are associated with short-acting drugs. But, everyone is different and the trick is to find the combination of drugs that work best for each of us.

You made no mention of a breakthrough medication. Most of us with chronic severe pain also use a short-acting narcotic (Hydrocodone, Oxycodone, Fentora, etc.) for breakthrough pain. Have you asked your doctor about a breakthrough drug?

You mentioned Elavil as having "no good or bad reaction." It is an axiom that chronic pain patients benefit from using an anti-depressant. Anti-depressants inhibit the reuptake a Seratonin in the bloodstream. Seratonin is one of the body's natural pain-fighting chemicals. Have you tried Cymbalta? It is a fairly new anti-depressant with pain-fighting qualities.

You mentioned fibro. Have you discussed using an anti-convulsant with your doctor? Anti-convulsant medications (Neurontin, Lyrica, etc.) have benefit for neuropathic pain and fibromyalgia. Combined with the medications listed above, it represents a valuable arsenal in pain management.

You also did not mention going to a comprehensive pain management program. There are literally dozens of non-invasive and marginally-invasive treatments available at a comprehensive pain management program, including: 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. I can drop my pain by 20% with biofeedback alone. Many people rave about acupuncture, hypnosis, kinesiotherapy, etc. I understand your reluctance to stop all of your medications. However, not all programs require that, once you've explained what you've already tried.

I can sympathize about your search for a physician who would also be willing to prescribe your large dosages of narcotics. Unfortunately, many contemporary physicians are more motivated by fear of the DEA than by reducing their patient's pain.

Have you considered psychotherapy? Our condition is depressing. It would be normal to need help.

Finally, if your pain is as bad as it sounds, have you discussed surgery with your doctor? I know that the success rates are low (40-60%) and some patients are not surgical candidates. You might want to request a referral to a spine surgeon (an orthopedic and neurosurgeon with a fellowship in spine surgery). It can't hurt to hear from the expert's expert. Good luck.
 
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bonniez45 replied to cweinbl's response:
Hello, in response to your queries when I am talking of bad reactions I have violent vomiting and almost comatose from 1 elavil pill,severe migraines and vomiting from methadone, the third pill can't remember off the top of my head I do have it written down on a card for Drs but that one had me halucinating.
I was taking plaquenal but I do not weigh enough to keep it going as it makes you lose weight. Off and on I do take nuerontin and another anti convulsant.
I had been taking zoloft for a couple of years , when had weaned off the fentynal and I had the stroke it was decided to start a clean pain system with minimal amount of drugs.
I cannot have surgery due to the steroid injections,prednisone said I would need a multi-level and my bones could not taked that and that's also due to the sjgroens.
As of now I just take the 80 mg a day ibprofrin and nuerontin this is the best I have been since this started and was bedridden and out of my head with pain. Funny how you know what pain is doing what what to do for it whether it's heat ibprofrin laying on my side and focus on something else that's why my husband bought me a laptop, I do not get breakthru meds it's not very often that I think I would need them my Dr. thinks I should put that off as long as possible.
I do not know why my pain got so out of control that it takes this kind of dosage I was a person of no pain no gain I have tried to cut back but with no luck and to put myself back to almost nonfunctioning scares me.
When my body feels this isn't working we are going to switch to a similar drug but will be different for my body so I won't go up in dosage and he counts breakthrough as going up in dosage.
I do meditation and very mild yoga and go into every hotub I can.
I am on medicare and we do not have a large income coming in so sometimes which is most I have to take my body as to what is needed most and if we will have money for the co-pays etc. I do feel we need more politicians on pain management side as I know so many that are undermedicated and I find it hard to be angry with anyone like that who try other means because of the help they are refused.
Many Drs. don'y even look at my file they just tell me you will never get that amount from me or like many these days they will not give any pain medication Which is a reason why I would love to be on less and I wish my body would let me. I have never exceeded, run out early another problem that I have seen which makes no sense you are told don't let your pain get out of control take the pain medication before that happens but, on the other hand they do not want you taking it an hour early. I have a time of day when my pain is worse usually between 1 a.m. and 5 a.m. and I have to take me pills a couple of hours apart. When I started oxycotin it was 2 80s 2x a day after my pain was under control at a point I spread that out. Now I have 2 pills early in the morning close together then I am able to spread the other 3 without having too many pain problems. I always hurt it's what I can ignore that makes me better. Thanks for talking to me I'm usually upbeat except for my anger in this area of my life and when Casey Anthony was acquitted.


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