The Lupus Forum banner

Help with pain meds

610 Views 12 Replies 10 Participants Last post by  LBH
Hey all,

I was wondering if I could get some advice on pain treatment. I am on 3000mg cellcept, 200mg plaquenil twice a day, paxil 20mg, amitriptyline 25mg twice a day, nexuim 40mg, prednisone 35mg, and dilaudid 6mg three times a day. I have been trying to figure out the best meds for pain. I tried percocet and oxycodone with little result, then i went to 105mg ms contin and now 6mg dilaudid. Nothing is working very well. I would like some suggestions. I have tried the antiinflamitories but they don't wortk either. I am so used to the drugs in my system that they lose they potency. I haven't slept through the night in weeks. I'm exhausted and walking with a cane. Unfortunately narcotics seem to be the only answer, I don't respond to anything else. I feel like a drug addict when I'm talking to my docs and telling them I still have pain. However i still have pain and I need it to go away.

1 - 13 of 13 Posts
Do they have a pain management clinic near you? They are the experts and will know all the tools that can be used.

There are some here that take methadone, or have pain patches which are quite strong too. Some people find taking nerve pain medications help them such as neurontin. There really are a lot of options out there, I hope you find something that works soon.

One last suggestion - a short trial of sleeping medication can often help to break the deprived sleep --> increased pain --> more deprived sleep cycle too.

Thanks Maia,
I am scheduled to go to the pain clinic in my area, unfortunately the wait list is almost a year long. I am taking a nerve blocker but it doesn't help much. I am so frustrated right now. I've been sick the last few weeks, well sicker than normal LOL. I just wish I could find something that worked. I also tried the fentanyl patch but I had an allergic reaction to it. Also some of the meds that are available in the US and the UK are not availabe in Canada. Thanks for the advice.

Hi Jenn

Sorry you are in so much pain, I can empathise. When I was taking amitriptyline for nerve pain I took the whole dose at night. It does help with sleep. However, I was on 75mg and after a while I became used to the level and was getting breakthrough pain. The doc switched me to dosulepin 75mg and that has kept the pain more or less under control for well over a year. I sometimes have to supplement with dihydrocodeine, though.

I hope the appointment comes soon for you. There are quite a few meds that are available for nerve pain, like gabapentin and neurontin and some other anti-epileptics (tegretol???) as well as the ami and dosulepin. I hope you can get the right combination to give you some relief.

Love Judi xx
Hi there,
I sure know how you feel when you can't control your pain.... I have been on morphine for years... it has helped me more than anything else.. my doctor has given me statex for breakthrough pain....
Everyone is so different, what works for one doesn't work for others though... They gave me all kinds of different pain meds before I had something work for me.. I also go for massage therapy weekly... And one drug I take for pain that you are not on is neurontin... I dont know if that is one that will work for you.. Something to discuss with your doctor...
I sure hope you can get something to work for you... And that you can get a good night sleep... I am sorry you are suffering so ...
Take care
Love Penny
Hi Jenn,

I am very sorry, to hear you are suffering with pain. :(

It is so miserable. I understand, your feeling about worrying, your drs. may think your a drug addict, but , I think all one has to do, is look at the meds you are taking, and realise that your not malingering.

I go to a pain clinic. It is expensive for me..but, I live in the U.S. Maybe, it will be different for you. I do hope, you can find the right combination for relief.

It can be difficult, as our bodies change over time..and so do our meds.

Best Wishes,
Thanks folks!

Hi All,
Thanks for your kind thoughts and advice. It is really hard to try and find the right combination of pain meds. I have slept a little better the past few nights and that has really helped. I have tried so many different things with little success. I go back to my doctor next week to discuss this but he doesn't deal with many patients like me and he is very cautious. Thats not a bad thing, I'm just tired and want relief. Thanks for letting me know what works for you guys. Everyone is different but it helps to know others take these drugs to, I don't feel so alone.

Thanks folks,
Hi Jenn,

I'm sorry you are having such a hard time with pain :hugbetter: it's all consuming until you find something that suits you. I'm on all kinds of pain meds for different reasons and they work for what they were designed for. But if you are having what might be described as nerve pain then something like Neurontin would probably be the answer. It's made a pretty big difference to me already and we are still tinkering with the dosages. Something to ask your docs about. Ami can be used for nerve pain too, but sometimes it's not enough and they have to go to Neurontin.

I hope you get some relief (and sleep) soon.

Hang in there,

I"m sorry you are in pain. I am on an extended relief morphine drug called Avinza, and neurontin 2 300mg 3x a day. Usually both are enough. Right now I am in a fibromyalgia flare so they are not working so much right now. I hope you get a pain mgt appt soon!!!
Hi Jenn,

I really empathise, i spent the whole day in so much pain, i had to get my hubby home from work, i can hardly walk.
I take upto 400mg tramadol which does help however today even this had not been enough. I also found amirtryptaline helpful at night time, i would also take the whole does then and it did help me sleep better. Unfortunately have to stop it recently and efinately have not slept well since then.

I really hope you manage to get your pain sorted out, it relaly is awful and can drive you crazy. I felt like screaming this morning.

Lots of Luck
I just wanted to send soft hugs and encouragement. I know how bad it can be. This constant pain is a disease in itself and it robs us of the joy of life. I wish I could take all the pain we all suffer and turn it into something beautiful.

Gentle hugs,
Hi All,
I wanted to say thanks again for all the support. I have been on lyrica for a week now. It is helping for certain pain but not others. I am glad to have some relief. Unfortunately my other pain, like muscles and joints is not affected by it. I still haven't found the right combo of the other pain meds yet. I did however join a new chronic pain support group in my area. I has been helpful to meet with other folks that have this problem. I really wish that one of these narcotics they put me on would work. I've tried percocet, ms contin, and now dilaudid with no relief. I am so frustrated and the more I stress the sicker I get and the worse the pain gets. Funny how that happens ;)

Thanks for all the support and advice, keep it coming if there is more.LOL
Looks like so many of us are in pain this week

Hi Jenn! Count me in too!:sad: These past two days have been rather grippy for me. Took meds this morning and nothing. Even upped the dosage a mild bit and still nothing. And I am not a pain tolerant person. I can take mild pain but one it starts making me ball up in a chair all crunched up like an old lady then I know I need more help. So sorry to see you hurting so bad Jenn! I too feel like an addict. You may have to talk with your regular doctor and see if he can just RX you something stronger just so you can have a break from pain just a few days. I wished I could help you but really don't know what I could do! Just wish you my best and hope you feel better soon. :wink2:
1 - 13 of 13 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.