NeuroTalk Support Groups - Not Sleeping Well, "fire" type burning increasing after 10 days of increased OpanaER

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- - Not Sleeping Well, "fire" type burning increasing after 10 days of increased OpanaER (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/89181-sleeping-fire-type-burning-increasing-10-days-increased-opanaer.html)

Not sleeping well

Quote:

Originally Posted by Dew58 (Post 520008)

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:eek:

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. :confused: 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,
:grouphug:

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:hug: 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:)

:grouphug:
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

:hug:

Quote:

Originally Posted by daniella (Post 520171)

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.

Oh my, how I wish I dreamt of butterfies. Usually my dreams involve a crocodile gnawing on my leg, being in a car crash with my leg totally crushed by the engine, or some other type of image. :eek: Yes, that is often why I don't get more than four hours of sleep. Once one of those wakes me up, I can't relax and get back to sleep.

Mike

Sorry to hear what you are going thru Dew. I'll bet the severe pain ends soon. Maybe you should push for breakaway pain med? My wife Suzy was able to receive her script for Opana. The doc prescribed one 40mg opana per-day to be taken two hours after dinner. She took her first one last night and didn't say much this morning except that she felt a small hang over from it. Dew, Maybe you should push for a breakaway pain med?

Dew,, Happy Anniversary! I hope you & your husband can do something nicew & enjoy your day. I am sorry you have been having a bad time lately but I hope you get a break today & can have some peace on your special day. I bet you were a beautiful bride! Mostly because you are still so beautiful (inside & out).
Hugs, Denny

Happy Anniversary, Dew!!!

I hope you have a great, low-pain day with your husband and do something nice together!

http://dl7.glitter-graphics.net/pub/...u28zdbjoze.gif

Take care of yourself !

Dear Dew,

Happy Anniversary!! Congrats on being together for 27 years. You are a wonderful example for your son. I really wish I knew how to put one of those cool graphics in here like you always do. It would be big and colorful and beautiful.

My husband and I will be 25 years this year, I can so relate to the deep, true love part. Unfortunately, we haven't unloaded the children yet. I can only hope and pray that they will one day be self-sufficient - we cannot wait for the emply nest!!! It's going to be AWESOME!! (My sweet little dog can stay, of course!). My oldest daughter graduates from high school this Thursday and will leave for college at the end of the summer.

I hope you can get a reply from your doc this morning. If you need an add'l script can you get him to call someone who lives closer to you (like your PCP) so that you don't have to drive 100 miles to get it? What a total drag.....

I hope you have a love filled, peaceful day

Sandy

Hugs to my Friends on NT

Thank you all for the well-wishing for Ron and my 27th anniversary:)

I called the PM doc and his receptionist told me that someone would call me back today. She ask me if I had break thru meds and I told her no. I explained that tomorrow would mark 2 weeks since I was placed on 20 mg. x 2 daily of Opana ER. It is not lasting for 12 hrs..more like 8 or 9 hrs.

Also, the pain flare is bringing on headaches and I have had weird stuff happening with my eyes. They don't focus clearly, and sometimes I see black dots floating in my right eye. What the heck is that from??? She didn't give me an answer. The heat radiating off my legs is ridiculous..I am not sleeping as I should..miserable. Again, someone will call me back from PM office.

I told her that I see pm doc next on 7/7/09..I need relief today.:eek:

I'm sorry you are having such a tough time... I pray you get relief soon!!

FYI... When my pain level is extreme I have the same thing - triggers migrane headache and my right eye vision is fuzzy and I have floaters. Sometime my eye will twitch/spasm. It's weird!!

I too have been married for 28 yrs (29 in Sept)... Isn't it wonderful to have such an awesome soul mate?? We are truely blessed!

Feel better soon... keep us posted.