Wow, you've been through a lot. I better understand why you have so much pain. I freeze up when I have a lot of pain, too.
I found a couple of forums with people who have bone necrosis. I haven't had much luck with forums as sometimes they're filled with misery instead of encouragement, and well, some people just like to complain instead of doing something about it!
Again, thank you. The sources of my pain result from small bone necrosis in my wrists and ankles, significant but not debilitating back pain and right hip. I have a feeling there is a rheumatoid component in my hands and some PTSD from the impact. In 1987 a skilled surgon put a silastic carponavicular implant in my left wrist (most painful procedure in my life, lots of nerves in our hands) which has helped to hold that hand together. Both knees were replaced with artificial ones 3-4 years ago. This was disappointing at first, but I was aggressive about the P-T and now they are not a large pain source. Walking is still difficult, I am 67 and I fall down too often. My biggest fear is increased loss of motion, that is what I get from the fentanyl - motion. But too many people are abusing it in West Virginia and lots of them die as a result. So the legislature has come down hard on the doctors and frightened them half to death. And now those of us with pain will have to pay, I'm sure you know the story. Please keep in touch, Zach
You're very welcome. I have struggled with pain, too, I know the frustration with the medical system. There's a doctor's rating site in case you're thinking of changing, assuming your in North America... some good reviews from patients http://www.ratemds.com/
Laura
Laura,Thank you so much for the encouragement, it means a lot to not feel so alone. The tags were very helpful.
There's non-opiate medication that works well for some. I don't know what kind of pain you have, so it depends whether it will work. In my case, the addiction specialist doctor called my doctor and told him of her recommendation for a taper. This might work for you so he doesn't cut you off which I think would be cruel. Being on 200mcg, I imagine the addiction counsellor would recommend stepping down 12.5 mcg at a time. It would take you 16 weeks with tapering every 2 weeks. It's long, it's been tough for me, but there is a light at the end of the tunnel. is your doctor a neurologist or pain management doctor? If he's just a GP, maybe you can get a referral to someone who is more knowledgeable in pain management.Here's Dr. Tennant's site, http://foresttennant.com It really helped me understand pain without the label of an addict.
Lyrica
Cesamet (synthetic THC)
Tramadol
For taper:
Sleeping pill
Natural stuff:
Cayenne pepper cream
Epsom salt baths
Some people have used the below Thomas Recipe to withdrawl.
The Thomas Recipe for Cold Turkey Withdrawal
THOMAS RECIPE
If you can't take time off to detox, I recommend you follow a taper regimen using your drug of choice or suitable alternate -- the slower the taper, the better.
For the Recipe, You'll need:
1. Valium (or another benzodiazepine such as Klonopin, Librium, Ativan or Xanax). Of these, Valium and Klonopin are best suited for tapering since they come in tablet form. Librium is also an excellent detox benzo, but comes in capsules, making it hard to taper the dose. Ativan or Xanax should only be used if you can't get one of the others.
2. Imodium (over the counter, any drug or grocery store).
3. L-Tyrosine (500 mg caps) from the health food store.
4. Strong wide-spectrum mineral supplement with at least 100% RDA of Zinc, Phosphorus, Copper, Magnesium and Potassium (you may not find the potassium in the same supplement).
5. Vitamin B6 caps.
6. Access to hot baths or a Jacuzzi (or hot showers if that's all that's available).
How to use the recipe:
Start the vitamin/mineral supplement right away (or the first day you can keep it down), preferably with food. Potassium early in the detox is important to help relieve RLS (Restless Leg Syndrome). Bananas are a good source of potassium if you can't find a supplement for it.
Begin your detox with regular doses of Valium (or alternate benzo). Start with a dose high enough to produce sleep. Before you use any benzo, make sure you're aware of how often it can be safely taken. Different benzos have different dosing schedules. Taper your Valium dosage down after each day. The goal is to get through day 4, after which the worst WD symptoms will subside. You shouldn't need the Valium after day 4 or 5.
During detox, hit the hot bath or Jacuzzi as often as you need to for muscle aches. Don't underestimate the effectiveness of hot soaks. Spend the entire time, if necessary, in a hot bath. This simple method will alleviate what is for many the worst opiate WD symptom.
Use the Imodium aggressively to stop the runs. Take as much as you need, as often as you need it. Don't take it, however, if you don't need it.
At the end of the fourth day, you should be waking up from the Valium and experiencing the beginnings of the opiate WD malaise. Upon rising (empty stomach), take the L-Tyrosine. Try 2000 mgs, and scale up or down, depending on how you feel. You can take up to 4,000 mgs. Take the L-Tyrosine with B6 to help absorption. Wait about one hour before eating breakfast. The L-Tyrosine will give you a surge of physical and mental energy that will help counteract the malaise. You may continue to take it each morning for as long as it helps. If you find it gives you the "coffee jitters," consider lowering the dosage or discontinuing it altogether. Occasionally, L-Tyrosine can cause the runs. Unlike the runs from opiate WD, however, this effect of L-Tyrosine is mild and normally does not return after the first hour. Lowering the dosage may help.
Continue to take the vitamin/mineral supplement with breakfast.
As soon as you can force yourself to, get some mild exercise such as walking, cycling, swimming, etc.
I have neuropathic pain and have just detoxed off of 50 mcg path, so I can give you advice from my experience. I am still Oxycontin and am seeing a doctor next week to get an alternative for the pain.
Your addiction guy is right. if you have vaiid pain, detoxing without a replacement won't work. Your mind won't be able to handle the pain. I met with an addiction specialist, too, and they recommended that I taper off very slowly. We discussed detox programs, but she was against them as they are very tough on the body. They're best suited for addicts not people with valid pain. Her plan was to cut the patch in half, I had the duragesic kind that could be cut. If yours are gell filled instead of looking like a piece of plastic, cutting them is not possible. The problem she said with Fentanyl is our bodies become physically dependent on the drug to the point of taking more than we need for the pain we have. I was able to stop 50 mcg and I am in the same level of pain as before, so take heart, it is possible. Her recommendation was taper every two weeks, so mine took almost two months. I tried to go faster before meeting her, but became really depressed when tapering. The slower taper works much better, but insommnia is tough.
I can see why he's asking you to get off them The amount of Fentanyl you're on is normally reserved for terminal cancer patients. I know in Canada, he could lose his license for prescribing so much for someone in your condition. So maybe his insistence is panic on his part.
So good luck, I did it and I think it's possible for you, too. Dr. Tennant on the web has some really good pain advice and lists all the medical treatments. I've got to run, I'll add more later,
Take care, Laura
You don't say what kind of doctor that you are seeing, but it sounds like you need a pain management doctor which would be the best, or a neurologist.
And if insomnia is a problem, there are medications to help with that.
Good luck to you and keep us posted.
Sara