Hi, I am an RSD/CRPS unfortunate sufferer for close to 2 years now. I've been through just about every opiate including, but not limited to; morphine,methadone,percocet,lortab,hydrocodone,oxycodone,etc. When my pain spikes I end up in the ER on a regular basis, (an aggitating subject in itself since NO ONE knows what this disease is.) They end up giving me iv injections of valium and dilaudid. I take the vicodin on a regular basis through my dr. but have never received a script for dilaudid for pain. It IS the only med that provides break-through pain relief. I've talked to both my dr. and pain mgmt dr. about this but so far no scripts for the dilaudid. My pain mgmt dr prefers all scripts come from my RSD doc for the benefit of not crossing scripts. I am currently a med student and have no problem injecting myself if need be, although I do see dilaudid also comes in oral doses. Is any other RSD/CRPS patient taking this drug and if so how'd you get your dr. to prescribe? Does the dilaudid work for you? I'm really tired of being a guinea pig on higher doses of alternative meds that DO NOT work and having to live w/alot of side effects from something I'm not receiving a benefit from. Thanking you for any help and God Bless.
I also suffer from RSD/CRPS the pain that no one can explain. I fell 5 years ago and shattered my wrist 27 surgeries later I am still not anywhere near the mobility that I once had. They tell me that my brain never forgot the pain and that is how they described RSD/CRPS. I have had Stallite Ganglion Blocks and have been offered a nerve stimmulator which they would put ion my spine and I would have a remote control device to zap myself when the pain was bad. (NOT FO ME).I have taken percocete 10/325mg QID
topomax lyrica neurontin kadian Duragesic patch trileptal and still in pain I am now on Avinza 90mg it is a 24 hr capsule sustained release and Morphine sulphate imm for break through I did not want to take the percocet and longer due to the fact that I felt that it was no longer giving me the pain relief I needed and the tylennol factor. The Avinza seems to be working okay unless I over due it the morphine I do not think works that well and cymbalta 60mg for depression and anxiety with this pain who can not help but be depressed and anxious. But my Doc said that it only seems that way because I am missing the buzz that percocet gave me. (I DID NOT EVEN KNOW I WAS GETTING A BUZZ LOL) I used to go to a pain management doc but then changed primaries and this Doctor has agreed to treat both the anxiety and depression and pain since the meds can be very confusing to manage with two docs involved. I do not know that dilaudid is prescribed that often as a long term pain management medication. I could be wrong but having worked as a clinical co-ordinator in a hospital as well as in a Doctors office I have seen it used short term in the hospital but never anybody discharged on it or prescribed in the office. The Blocks worked short term and it is a grueling outpatient proceedure that you need IV sedation in an OR with inteventional radiologist as well as the PM doc doing the proceedure. The expalined it as injecting me in the neck with some medication that actually simulated a stroke it shut down the brain and rebooted it like a computer hoping the brain would forget the pain. Well my brain is one of a typical woman who forgets nothing. I would wake up with a facial droop and sore throat and it took me 3 -4 days to recover. I had about 15 of these. They do them in a series once a week for 5 weeks 3 weeks whatever the PM decides. I do not kniw what part of your body is affected by this wonderful condition but they are some of the things I tried. I do not know if this helps any since your question was about dilaudid but maybe you can try the other meds or the blocks. Good Luck and God bless . please do not mind the typo's it ius my wrist that is affected so I have very slippery fingers. Please keep me informed thanks
Hi, my husband also had a hand injury at work... he got it caught in a machine. After 14 surgeries he has been diagnosed with rsd. He just recently had the spinal cord stimulator trial and it took 50-60% of his pain away... we are now waiting for the permanent implant. I dont know if you were able to try this yet... but i do think it is worth trying!!
Hello, I have RSD and my pain is in both arms and left leg. I have made many visits to the e.r. as well and dilaudid is always what they give me. I was diagnosed in 2003 and went through many sympathetic nerve blocks, fentanyl
patches, and many different opiates, non of which really worked. Finally my pain management doctor talked me into getting a neuro- stimulator and my ife has changed tremendously. If pain is so bad that drugs only last 4-6 hours maybe you can ask you pain treatment doctor about this. Do not let me mislead you cause I still have consist numbness,arm swelling, and balance problems,but at least no more opiants or blocks.this has been a big life saver for me. My device is made by Medtronics and is inplanted at C-2. Know this doesn't answer your question about meds but maybe this can help you consider this option if not already done so. Good Luck with your future.
I have suffered from RSD for the last 6 years and i can totally relate to how annoying and painful our everyday lives can be... I was originally stabbed in my right forearm and all my tentents were cut so i couldn't move any of my fingers or thumb. So when the surgeon went in to repair the damage he damaged my nerves or something ( No dr. has been able to tell me what causes my pain which is agonizing DAILY) which hasleft me suffering since i was 21 years old... So i've tryed every treatment from steroid injections in my neck to a thing called a spinal cord stimulator which was complete hell.
Not to mention all the narcotic pain medications and non narcotic ones that provided no relieve (non narcotics), But after 2 years of being on Oxycontin to where i was taking 320mg a day which is ridiculous I have been on 120mgs of Methadone which helped my pain more than the o.c.'s did But ironically in April i fell and broke my collar bone and the doctor i saw gave me a script for 8mg dilaudid and it relieved both pains phenomenally but of course they wont prescribe me both so im sticking with the Methadone but my advice is to tell your doctor that the dilaudid helped your pain more thn anything else and u just need some relieve from your daily pain... Me personally this has ruined my life crippled my career and has left me with daily panic attacks and fear for the future of dealing with this pain for the rest of my life. I hope this was helpful for u in anyway but just know you're not alone
GOD BLESS AND ALL MY PRAYERS GO OUT TO YOU... ; )
hello, i know what you are going threw, I am going on my 14th year now and went back and forth with all that crap. I have been on dilaudid for years, but after my first 4 years I got an infusion pump and what works best is prialt, you need to find a good pain dr do some research, it is very had to find a dr who even knows what rsd is let alone treat it.
I am a 23 year sufferer of RSD of my entire right leg, reaching now into my middle back on the right side. I have taken Lortab 7.5/500 for many years, and it is not doing the job anymore. I am looking for a new pain medication. I am allergic to toredol, morphine, Ultram, and demeral. I suggested dilauded tablets to the nurse at my Dr.'s office, and she went nuts because it is addictive. I do not think that will be problem for me as I do not have an addictive personality. Part of my problem with her attitude is that I will probably be on it for the rest of my life so what is the problem?
Right now I am going days on end with no sleep. I finally sleep a little off and on this morning from exhaustion.
I am looking for help before I see my doctor on Monday.
I have RSD/CRPS since 2/13/2000. During a flare up or after any other minor surgery or procedure the only medication that gets me back to being able to walk out of the medical center is DILAUDID. Doctors who know nothing about RSD, even when you tell them no fentanyl use dilaudid. They don't listen & fill me with fentanyl with no pain relief. Finally, my husband and I ( if I can) get them to give me one shot of dilaudid. After some time passes I get relief enough to go home. In my opinion the first thing an ER Doctor should give a diagnosed RSD patient when they go to the ER for pain relief is dilaudid. It would save a lot of time and suffering. It's not drug seeking. Hope some medical people see this and do a study on the effects dilaudid and RSD.
Thanks for listening and God's Blessings to all.
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