Pain Doc put me on dilaudin--please some feedback!

Hi All......Went to a pain doc in hopes of getting some botox injections for my back. But in the interim between making the appointment and seeing the doc, my pain increased. I have both fibro and bad rheumatoid arthritis. Most of my fibro pain is back stiffness which i was getting some relief with baclofen at night. The rheumatoid affects all my joints and has been bad since I started coming down off of the steroids ( had to do this as I have had four fractures in the past two years.) I left the office with a script for nuycenta which worked well but knocked me out. Now I am on Dilaudin 2mg three times a day and feel just ok. I wanted to try the lower dose of nuycenta but the insurance said no.

Anyone have experience with dilaudin? Thanks

Hi Kitty, I am sorry you are in so much pain. My first instinct would be to run from the dilaudid because it is so addictive and as with any pain med you are only going to need more and more to keep pain under control. But I am sure others on here will know much better than I since I only have chronic fatigue along my fibro. I just wanted to reply to your post to say you were heard. I hope they can give much better answers than mine.

Gentle Hugs


I was on methadone and dilaudin and it worked out fine for me. A buddy that works undercover for the DEA wanted me off the methadone bad. So switched to 15mg of oxycontin 2 times a day. I can take 2mg to 4mg of dilaudid every 4 hours for break through pain. I am getting my oxycontin increased to 30mg 2 times a day. Hopefully I can cut my dilaudid back. I have been taking it every 4 hours. I have not had any side effects from it. I have 10 bad discs and fibro. The biggest problem I have right now is not being able to sleep. I take 10mg of valium at night to help me sleep and have for the past 3 years. It just doesn't help anymore. I sleep 1 night and up all night the next. This no sleep thing is getting old. Anybody have any ideas?

Dear Fibrokitty and everyone else who has pain in a specific area ( as opposed to all over). My husband is a Dermatologist, and recently one of his drug reps called and told him about a new formulation that is being used to help with shingles pain. He had some made up for me (it is a cream) and the next time I got the pain in my thumb from my arthritis, I used this cream and man oh man does it ever work! It has lots of normally oral drugs put into this cream. Like Ketamine and neurontin, etc. anyway–I got some for my dad who has a pinched couple of vertebra in his back from years of being a marathon runner—and he emailed me to say it was a miracle cure!

It is very xpensive–but if any of you are interested, I will find out more about it and tell you what it is.

Look up dilaudid on the Internet
If I was taking it I would get off NOW. The information scared me so bad I never want to even try it

Hey! Im sorry to hear about all your pain! I agree with the comment above run from the dilauded! Taking it like that can cause a very bad addiction. I am on the same pain med but I only take it when I NEED it…10 pills can last me 6 months…and that’s only if I feel the pain could send me to the hospital. So you can use it but I would say rarely to prevent addiction. I use Tylenol precise cream to help ease the pain and relax

Yes, Dilaudid has a very high chance of addiction or dependence .... but so does every other opioid pain medicine on the market. Vicodin, Percocet, Nucynta, Oxycodone, Oxycontin, Morphine, Oxymorphone, Fentanyl, etc etc etc.

They all carry the same warnings -- every one is as dangerous as another, even if one is a weaker pain reliever.

Everyone should look up their pain medicines, and see what they say. You might be surprised at the dangers involved !

I have dilaudid which I only take when I absolutely have to. But, I have had two different doctors tell me it is not addictive if you take it for pain as opposed to just popping one to get a “high”. All pain meds have potential for addiction and physical dependence or they wouldn’t be so regulated. You gotta do what you gotta do for the pain but my rheumatologist is going more the route of muscle relaxers. But everyone is different and different things help different people. Good luck. I hope you find some relief.

I take Nuycenta and have no side effects. That is odd. Different people have different reactions. Sorry, I can only get 15 of these per month. He isn’t going to give me Dilaudin. Good luck.

I don't think it's such a good idea to be on that. That's pretty strong reserved for people like just out of surgery or something really bad. If you become dependent on this, there isn't anything stronger in case of an emergency like an auto accident etc. Besides if you need stronger doses your body can build you up to a point that nothing is effective anymore and the amount you need will kill you. Also, your Liver and kidneys will be shot while you are detoxing from it you will wish you never heard of dilaudin.

Nobody can say how much pain you are in. No one can visibly see your pain and the same thing is different to another. I am trying all kinds of stuff from herbal Chinese to now the doctor has me on Lyrica which doesn't seem to do anything either. How I get by is the best I can. I relish the sunny days in my life where I don't hurt as much. On the days I do, I have my wheelchair and the vicodin. My neurologist is going to try botox on my head for those never ending headaches. Now I'm switching insurance and worried I'll have to wait a long time for approval again. I'll update after I get it to see if it works. It is supposed to basically freeze the muscles around your scalp and neck so they cannot knot up.

I, like everybody else here is willing to try just about anything to live with less pain. I would say tho, please use the dilaudid as a last resort.

Terri...thank you so much. That is so kind of you and it does mean a lot to know I am being heard. But never downplay your own illnesses. Fibro and CFS are enough to have, don't you think? Hugs and Love

Wow...I thought dilaudid would cause you to be tired. It has been two days for me and I feel tired.


My pain doc ordered that same crm for me and it does wonders. I will post the info later when I am able to walk upstairs to get the crm. And my insurance covered it!

Very good point, Renie

thanks so much

Tricky...I would love to be on the nuycenta, but my plan does not cover this. Perhaps if I fail on the dilaudid I can get a prior auth....good for you

thank you Sandi..for the info and concern

Hello Kit!

I have been given it, but it did not work well for me, but then I was in a very bad way at the time, after my third car accident. I take Opana, but still refuse to take it as a maintence drug, I want to be a responsible grandmother, since the boys love to come, and sometimes I need to meet them to get them, or may have to run to the drug store for something for them. I don' t want to have to drive while taking them, am nearly homebound now, so I would be totally stuck that way! I also fear dependancy.

I know you suffer, you have been through a lot. Honey, you know more than we can ever hope to as a Doctor's Assistant!

Hope you can get some relief! Here is some info for those unfamilair with the drug. Nucynta is a new one on me, this link talks about it's ability of changing the way your body responds to pain. I am not yet sure how that happens, but it sounds promising to me!