Recently, I was increased on the med Opana ER from 10 to 20 mg x2 per day.

I will see PM doc on 7/7/09 to see if the med needs to be increased again.

My first experience with Opana ER was a great one; I was a happy gal, immediately...slight burn/ache pain.I traveled to AZ and back, no probkem.

Now, it has only been 10 days and I feel break thru pain,already! I have had nights that I have slept 3- 4 hrs, and then wake up because of nightmares, and a strong burning pain. I attempt to stay awake during the day, forcing myself too..so that I can sleep a good night's sleep that night. It does not work to do it that way.

I feel the "fire" burn crawling up both legs( above my knees) to my hips,mainly on the outside(lateral) and front areas of my body, and then spread across my bottom and then up my back/spine. I wake up with such dry mouth that it is hard to swallow. At times I have to catch my breath as it feels shallow and difficult to breathe.

PM doc (WC) placed me on MMI. All he can do is adjust my meds. for me;however, it is difficult to contact him on the weekends. I just have to make it 2 more days....so frustrating

I have been crying at a drop of the hat, from being so tired ,as it makes me very emotional. It has been very humid this week, raining off and on. My sinus is dry. It is difficult to focus with my eyesight as everything seems fuzzy. I have had some harsh headaches,too.
I just want a good night's sleep.

I saw my psychologist yesterday, and we talked about 1 1/2 hrs. I cried the first part of my session. My psychologists thinks I should take Topamax-HS, at night, before bedtime. It would help me sleep and ease the burn when I am asleep when the sheets touch my skin. He thinks I am waking up because of the break thru pain, as well as the anything that touches my skin.

Have any of you tried Topamax- HS? I have made a call to my family doc and left a message to call me.

Thanks for your input,

I'm so sorry you are having such a hard time, but I kinda know what you mean. I thought it was just me but I guess not. Like you, I'm back to not really sleeping at night, and as I'm having a flair now, it's hard to remember breakthru pain, but I know I have it. I'm taking 5 mg Opana IR, for the breakthru and it does seem to work. I haven't been taking it like I'm suppose to, so I guess I only have myself to blame. When taken as I should, the 5 mg does make a difference. I wonder if that is something that your dr. would give you? It is such a great drug, that it has to work.

Hugs
Mary

Hi Mary,

The only break thru drug I have is nothing! Is that how your doc prescribed for you..only Opana ER, then saw that u had break thru pain..and prescribed Opana,instant release?

Dew's Current Meds

Opana ER 20 mg x 2 daily
Ultram ER 300 mg
2400 mg. Neurontin
Xanex 2 x .25 mg daily
Cymbalta 180 mg
Mobic 15 mg
Diovan HCT 160/25 mg.
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Tens Unit
Flector Patch
Lidoderm Patch
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GONE from MY LIST since last PM doc visit: Lortabs 10/500 mg x 3-4 daily, which was my BREAK THRU Medication
I had been on them over a year and they didn't seem to be working,anyway.

I now take 18 pills per day vs. 22 pills per day. Topamax is suppose to assist me in sleep and have a calming affect upon me. Have you ever taken Topamax?

I wish I could help, but I am *so* not familiar with Opana. I'd call the doctor asap to ask what you should do in the meantime, until your next visit, or make an appointment to see him right away. Ask the doctor if he knows of a medication that might be suited to act as a breakthrough medication for you.

I'm on gabapentin & pain patches (buprenorphine pain patches). I have the same kind of medication as my pain patches for breakthrough pain: oral, sublingual buprenorphine. If I get breakthrough pain, and this can vary quite a bit, all I have to do is put a small pill under my tongue and wait for it to work. Usually I end up having to take two because I've waited too long to take something. It is atrocious to get breakthrough pain. I mean, my pain is still there, it's there all the time, but it's there to a point where I teeter on the brink of manageable. I do not want to be a zombie. I can get quite a bit of breakthrough pain. Only in the summer do I get some form of relief from it all - it's my favorite season, it's like my bones warm all the way through for a change.

Initially, my dr. just prescribed the Opana ER. When I saw him last time I told him that it wasn't lasting the full 12 hrs, that I was only getting about 9-10 worth, and that is when he ordered the Opana IR. I'm suppose to take it at hour 10 on the ER dose. So that means that I take the ER at 7.30 am and pm,and then I take the IR at 5.30 am/pm. Of course, I'm not getting up at 5.30 to take meds, so sometimes, if I need it, I take the IR at about 6.30 and then the ER about 7.30. I figure the norm is about 1 hr either side of the time works for me. I'm also taking it during a flair whenever I need it. (but not more than about 5-6 hrs between). So far it is working ok. I wish their was a cure for the nightmares. It's good to know that it's not just me.

Mary

I am sorry but relate to the sleep issue. I can go nights with none. As for Topomax I have heard of it for head aches and was suggested it but then it was ruled out due to it causing weight loss and I can't have that. I take serequel which is supposed to help with sleep and moods but does not. Also klonopin for muscle relaxer and is also supposed to help with sleep. Random ? are you guys having nightmares about your pain and health or not. Mine are and I also get woken up like I am seeing things like bugs or last night they were butterflies but that may be from all my eye floaters. Who knows but usually I wake thinking of my leg pain cause I feel a bat came and hit me when I have no circulation. Ok sorry for getting off base here.

Dear Dew,

I am so, so sorry that you are having a hard time.

I take Topamax, but not Topamax HS. I don't know if they are the same thing. Topamax is an anti-seizure med, I tried Neurontin and Lyrica first but had bad experiences with them. It is often used for migraines. It does have some side effects, you need to be careful that you drink a lot of fluids because it can cause kidney stones. I also drink cranberry juice in the morning and at night to try to keep my kidneys healthy.

Doesn't your doctor have an answering service on weekends? How about a walk in clinic or ER? I think if you are really suffering you deserve to be treated for your pain. It is only Sat.

Methadone has made a big difference for me. I'm still in pain all the time, but it's not like it was. I don't know how the strength of Methadone compares to Opana - whether yours is already a lot stronger than what I take.

I hope you get help soon. Please take care.

Sandy

Dew, I'm so sorry you are having such a rough time. The pain and no sleep combination can wear anyone down. I'm surprised the Opana is no lasting you, since he doubled it. You must be in a flare. The emotional stress of worrying about your sister I'm sure is taking a toll on you. You are such a caring person, I know you are so worried about your Sis.
Someone posted recently, I forget who, about the part inflammation plays on our pain, and how diet can help us. I did more research on it and have decided to give it a go, starting yesterday. I'm on a no gluten type of diet and concentrating on fresh fruits and veggies. There was a Dr. in Florida named Dr. Hooshmannd that I almost went to when I found out I had RSD. I never did go, but read a lot of his information on his website. He is now retired, but his years of experience and research is still on his website. There is a lot of information and questions answered by a part of his website called 'puzzles' He has about 140 puzzzles or 'questions answered' The website is www.rsdrx.com PLEASE look it up.
When I was at this years annual RSDSA conference, the drug called
? can't remember it but it was mentioned by one of the Drs. as being a good one for RSD. I believe Pete mentioned it. Take a look at puzzle #15 and tell me what you think. When I first read it a few years ago, I didn't agree with it at all, and couldn't imagine doing without the stronger pain meds, but now am wondering, could I make the change? I called my Dr. yesterday and asked for an appointment soon as possible. So I get in a week from Tuesday.
I feel like my life is slipping away, time wise, I just about can't function. I didn't get to sleep till 5 am this morning, then sleep till 1pm. I hate it. I did swim 45 minutes this afternoon and felt good doing that. But it seems I have no quality of life till after my second set of meds in the late afternoon and don't start to feel 'good' till about 6:30 at night. Then about 10:00pm start to try and get ready and try to sleep for the night.
I'm so sorry for the nighmares and the 'burn' and sensitivity you sheets etc you are having. It sounds like you are getting worse or a flare, like I mentioned. Is there any kind of swimming pool where you live? Indoor or one that is 86 degrees? I can swim, but just taking a shower and washing my hair, wears me out completely. I'm going to get a plastic shower chair. Or just starting taking bathes again.
I wrote down some notes on sleeping, or rather not sleeping. A generic version of Ambien CR is zolpidem -you might ask your Dr. if it is more effective than Ambien Cr in 'getting' to sleep. For 'waking up too early there is a drug called temazepam -it is the generic version of Restoril. I think I'm going to ask my Dr. about that one. I want so bad to get on a schedule of sleep - where I can get up in the morning at 8 am and have a life. I really need to get some new accounts to replace the ones we lost. I've hired two women that I will train this week.
I think this information came from Dr. H's puzzles. He recommends seeing a board certified sleep Dr. www.sleepcenters.org has a list of them by state
Insurance may cover this treatment or C.B.T. "cognitive behavioral therapy"
helps change thought patterns and anxiety. They say "too much time in bed' impairs sleep and "not exercising all day" (that's why I got myself in the pool today"
Well, sweetie, I know about the crying, I've been doing some of that too.
Hope you get some help, if not this weekend, at least by Monday morning. 100 miles away for your Dr. isn't good. Have you tried massage therapy? Maybe your Dr. could write you a perscription? It really helped me. My fact is full of knots-like inflammation- Tomorrow I'm going to try and get into someone, they do lymphatic massage to try and get the toxins out of you. I KNOW it works. In the winter I get so many sinus infections, and a good massage person can release those pressure points. The place I used to go to closed down, so need to call a girlfriend and see where she is going now.
I so hope you can sleep tonight. I'll be thinking of you. Take care of yourself. Your friend, loretta hugs I love all your graphics.

Good Morning All,

It is 4:09 AM,Central Time,Oklahoma. I am awake, but did sleep 4 hrs in a row. I was up early yesterday morning,too. I took my meds, and about 9:30 AM, yesterday, I went back to bed until 2:00 PM.

Loretta, I understand your daily schedule as I am also having a split-shift in sleeping this past last week. I will attempt to call my PM doc in OKC,this morning around 8:00 AM.

Today, hubby and I have been married 27 years. We are still in love with each other;that REAL love where we are so connected to each other that we know each others thoughts. I don't know what we will do today. It depends on me, and the pain. Hubby told me that he enjoys it only being us,together. Yes, our son will pop in and stay a while. Hubby means others that are not empathetic to what we live with everyday,the RSD/CRPS.
I feel very blessed to have hubby in my life. Our son does well on his own and when he drops by to visit, we do have a good time together.

I need to take my morning meds. I hope each of you have a pain-free day, or at lease a low-pain day


Dew

WOW.....27 years. There aren't a lot of us around. I'm going on 32 this Aug. Hanging in there for that long does create a love that is so deep and wonderful. You know they are wonderful when they can take care of us like they do. I wouldn't trade him for all the money and fame in the world. It sounds like we are both getting thru a flare I hope yours ends soon. You know I'm there next to you, cheering you on.

Hugs
Mary