pain management support group

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.

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.