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Thread: I'm off Dilauidid and now I am dealing with a burning pain in my buttock cheeks

  1. #1

    I'm off Dilauidid and now I am dealing with a burning pain in my buttock cheeks

    I am so proud of myself and at the same time, I am miserable.

    I am in a nursing home and I posted in reference to weaning off of Dilaudid a couple of months ago. I was taking 6 mg. every four hours totaling 36 mg in a 24 hr. period. If I didn't get it, I suffered from Opiate pain withdrawal. I told my doctor I needed to get off of it and he wanted to introduce Methadone into the conversation and I interrupted him and I said I did some research on google and found out it was addicting so I didn't want to go that route. What I wanted to do was wean off slowly and he agreed. He wrote an order for 5 mg. every four hours around the clock. I suffered a bit but I was confident and strong and didn't allow it to take me over as I know that the mind is a powerful tool. The next week I told him I was ready for 4 mg. and he followed through with the order. Long story short, the next week, it was reduced to 3 mg. and then 3 mg. and then 1 mg. and I haven't had a Dillaudid since last Thursday with little discomfort! I am so proud of myself to go from 36 mg in a 24 hr..period to 0 mg. in a couple of months! That's the good news.

    From Great news to rotten news. A couple of years ago I posted that I was suffering severe buttock pain in both buttocks. My pain specialist tried all of these narcotics with no success and then he tried an injection of an anti-inflammatory/Steroid called "Depo Medrol" and I finally found relief after about three injections and the pain remained at bay until a couple of weeks ago. I made an appointment and he gave me four injection and two weeks later, the pain is back. The Depo Medrol is not working any longer. In the past, he gave me liaderm patches and that wasn't effective. I am now on Flector patches and they aren't working.

    What in the HELL is going on whew?. I give up Dilaudid Successfully and now I have to deal with this burning pain in my buttock cheeks? I am despite for answers..

    I became paralyzed in 3/07, incomplete at the t-7 level and I have been through supra pubic catheder surgery, colostomy surgery, baclefan (sp) surgery, infected heal pressure surgery, gallbladder surgery and two flap surgery's. I was in and out of St. Joseph's Hospital NINE times in 2010. When does this end? It ends now and you will see why now. Here is the good news. I had a flap on August 17 and my wound is completely healed and I am OFF the Clinitron bed and on a regular air low air loss mattress, I am kicking ASS in REHAB because a couple of months ago I began doing 6 different exercises in bed lifting 5 lb. dumbbells. I moved up to 6,7,8 and now I'm on 9 lbs. At the same time, because of all of that work, I am strengthening my trunk and I begin my slide board transferring next Monday and the best news is I move into my brand new apartment on November 2 with plenty of shopping nearby for my wheelchair!! How about them apples?

    Michael

  2. #2
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    Sounds like your on your way, congratulations. I can feel for you, with the butt pain, have you come up with any other ways to cope with it? I just started Lyrica, and it seems to help some, time will tell.
    T12L1 Incomplete Still here This is the place to be 58 years old

  3. #3
    Maybe I missed it in there.... but it sounds like you have neuropathic pain, like most folks with SCI. "Burning" pain is the classic complaint, and many have it in the butt.

    Are you on any neuropathic pain meds? There are a whole bunch of them that help a lot for most folks.

    Neurontin is one of the oldest, cheapest and most commonly used. You take it every day, usually about 3 times per day. Often people start with 300mg three times a day. It is well tolerated in general. It is a completely different class of medicines then morphine/dilaudid etc.. It was developed as an anti-seizure medicine, and then people discovered it helped pain. Lyrica is a newer formulation of Neurontin, but some people have more side effects with it.

    And there are many other ones to try for neuropathic pain.... others on the site commonly use amitriptyline or nortriptyline, cymbalta or effexor, topomax - to name a few. Make sure you start at a low dose, and continue to slowly increase the dose over time until you get a good control of your pain without intolerable side effects. Do not give up on the medicine until you have increased it to the maximum tolerated dose and tried it at least a few weeks.

    I would have thought the pain doctor would have tried all these medicines with you already. Steroids/lidocaine are not commonly used for neuropathic pain.

    But congrats on weaning of dilaudid and keep kicking ass in rehab!

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