This patient support community is for discussions relating to stroke, rehabilitation, ability to eat/swallow, alertness, bowel/bladder control, depression, motor skills, nutrition, orthotics/braces, pain, prevention, senses, and spasticity.
I am 3 and a half years post ischaemic stroke. I suffer from neuropathic pain and spasticity. One of my meds is Actiq. It has given me the greatest hope.
When and how should you bring the question up about increasing your pain medication. The concerns about dependence and abuse are so palpable that even though I've been at the lowest available dose of Actiq, 200mcg, for about seven months, and it's not doing the job it once did, I can't bring myself to either ask for a greater number or a higher dose. I like my physician but his admonitions about fentanyl death through abuse and other risks, (including immunosuppression - and I'm not compromised), together with a sudden interest in tox screens have poisoned the atmosphere such that rather than ask, I'm losing ground to the pain once again. Another factor in this foolish mix is that his associate issued the initial prescription to me while he was away. He was visibly caught off guard by this at our next appointment.
In the third month of this regimen I asked specifically if it would be alright to call him if I ran out - they were "prn". I called about ten days short of our next scheduled appointment with such a request and he would neither speak to me directly nor issue a new script nor see me sooner.
I've been with him since just after my stroke and all was well until his associate started me on Actiq. I feel like pride is at play here and I'm not sure where my confidence level is. Is it time to change practioners and does that come with the message that I left because he wouldn't give me drugs? How would I tell him?
Although my wife does not have a pain issues, we did find a wonderful young doctor (from China) who works at rehab and focuses on pain management. His attitude is to find the right medication at the correct dosage so one can participate in life.
Maybe it's time you found another doctor who specializes in pain management.
Thank you so very much for your supportive comments.
They convey empathetic and hopeful thoughts. They are very much appreciated.
The attitude you speak to concerning the Chinese Doctor is what I seek. I was a CEO and the loss of control I have experienced shatters one's identity. I am not a control freak but the condition over rides any sense of being able to plan and act. After three plus years, my expectations have changed but the pain's duration and magnitude is so unpredictable that I know my wife's life suffers with me. Is she just collateral damage?
Perhaps it should be required that the physicians' philosophies be published and binding.
To have the pharmacology to ease suffering and not to fully utilize it baffles me.
When the slightest piece of someone's life is lost to preventable pain the profession has failed yet some don't see it that way. Why does it seem to be protocol to consciously only partially alleviate this suffering?
In my opinion, the good news is that you ARE able to rant about this issue.
Lets see if I understand this. Your in pain. The meds aren't working at their previous level. Your doctor will neither return your calls or see you sooner to consider other methods for alleviating your pain. Sounds like it's time for you to find another doctor. Talk to as many people as you can about your situation. Someone may know of a better doctor.
Best of luck.
I was looking up something else when I ran across your posting.
For the past 10 years I have been suffering from nerve damage in my neck that radiates down my arm and into my hand. I too suffer from spasms in my upper arm and headaches. My Orthopedic surgeon sent me to a pain management physician. What a God send. You need to talk to your physician and see if hee can recommed one to you. Or look in the phone book or call some other specialist pysicians to see if they can recommend anyone. I wish you luck and a happy outcome.
As for the pain radiating down your arm, you need an axial traction device, and initially a dose or two of prednisone, then ibuprifin. Use the device four to six times daily for about a minute or two or three each. The pain is increased by osmolality caused by high blood sugar levels. You also need range-of-motion exercises through the limit of pain, or you will end up with a "frozen shoulder".
Sometimes the pain is caused by a subluxion injury, often from "whiplash". The body senses there is an injury and deposits "repair substances" that narrow the area through which the nerve passes. If it lasts long enough the damage can be permanant. The pain can be so severe you want to kill yourself. The muscle spasm is usually (but not always) in the muscle of the arm between the elbow and shoulder. The axial traction devices are available without prescription for about $35.
I have Interstital Cystitis (IC for short) a very painful bladder condition. I to have a doctor,my urologist who does not believe in prescribing pain meds for long term use. Vicodin after surgery is as far as she will go. I was trying to survive on the 20 Vicodin a month I managed to beg from her when she finally sent me to a pain dr. I'll admit I was wary, who would she send me to with her beliefs? I got lucky. That dr not only prescribed me morphine, but he also took an interest in my disease. He has about 7 IC patients. He reads articles goes to conferences, etc.....all for 7 patients. My urologist was ready to remove my bladder, an option I was not going to agree to when I started seeing him. He titrated me up to 200 mg of MS Contin, 30 mg of MS IR I can take up to 4 pills a day,Provigil to keep me from sleeping all day due to the morphine and Lyrica a drug made for the pain from shingles and the peripheral neuropathy diabetics experience. Thanks to the Lyrica I now go to the bathroom about 50 times a day as opposed to the 100+ times a day before. I am still on disability, I still go to the bathroom way too much, but I now feel hope. About 6 months ago he gave me a drug rep coupon for 6 Actiq. There are times when the pain goes from bad to excruciating, I call it the "yell out loud and body convulses pain" My husband once made a large red mark across 2 papers he was grading because I screamed so suddenly. The MS IR was not helping during these incidents. Now that I have Actiq I get through those times. My insurance company at the time wouldn't cover it so he gave me the coupons each month. Unfortunately on Oct 1 my insurance changed yet again and he is not one of their "in-network" dr's. He got me on as a patient with his primary care dr and is working with him. I offered to pay out of pocket to see him quarterly and he said no, if I needed to see him he'd practice "creative medicine" Now I've had a lot of problems with my new insurance, but the one good thing they've done is to approve the Actiq. My old one refused on the grounds that it was for cancer pain. I just picked up my first prescription and I have 30 for the month. Now I no longer have to consider, while writhing in pain,do I use the Actiq or should I hold off in case their is worse pain down the line? 30 is more than I need. My hubby is concerned, but I said I would stockpile it in case next year I have a different insurance that doesn't cover it. Pain is horrible as we all know. I'm finally in a position to manage all my pain thanks to a great doctor. I go to see my urologist just often enough to satisfy the disability company, but the dr who is truly helping me is my pain doc. Find a dr that will work with you. My pain doc once said he tells other drs who say they don't believe in pain meds "I hope one day you or a loved one is in chronic pain and noone will help, think about how you will feel when drs won't ease their pain" He says they are shocked when he says this, but it's true. Thanks to the problems we have with illegal drugs those of us who are truly suffering can't get the care we need and deserve. I imagine many do turn to illegal drugs which are probably easier to get, I don't know I never used them. The first time I knew what it meant to be "stoned out of my mind" was 2 months ago when my parents dragged me to Las Vegas and I spent the weekend looking like Kojak with an Actiq in my mouth all the time. AAHH I've probably said too much. Bottom line find a dr that will treat your disease and pain, you deserve it.
You are right, but morphine is an inappropriate long-term drug and should not be prescribed for this purpose. Oxycontin has a better safety record. The problem with mprphine is that the dose needs to be increased and there is respiratory depression. If yiy are on an opiate you need to go on a "drug holiday" for at least thirty days every six months, regardless of the pain. This will "clear out the receptor sites". Start again oin a small dose, because if you start on the dose you were using thirty days ago you are likely to go into respiratory arrest. If you are being prescribed morphine it is necessary for you to have the antidote, naltraxane, or nalaxone hydrochloride available in your apartment/home. Unfortunately, most physicians won't presribe this, mostly through ignorance.
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