Pain flares and weird positions in sleep

[Pamiam412]

I just got done with a 4 day pain flare and had 2 normal pain days and this evening I could tell I was headed for another bad one. It starts off with the pain getting worse by the minute and then its like the restless legs, but in my whole body. Is that normal? I take Oxycontin 10mg TID, Tramadol 50 mg 3 tabs QID, Cymbalta 30mg and Zanaflex 4mg for sleep. I have Vicodin for breakthrough pain. When I have a flare the Vicodin will help just a little, so this time I decided to try some extra oxycontin I had. It took 2  10mg pills and an hour plus to get the pain down to a dull roar. When do you know its time to increase pain meds? I have had a more difficult time with pain the last 2 months but have been afraid to ask for more because I cant afford to be sleepy as I am an RN in a Dementia unit and I have to stay on my toes for 5 to 6 hours on my good days. Another question I had was if it was normal to wake up in weird positions when in pain? I wake up with my muscles tightened,  but twisted to one side or the other. And last night I woke up clamping my hands over my ears and my teeth clenched so tight it hurt really bad just to release them. Is all of this because of the pain? Or am I weird and there is no explanation? Is the doctor going to think I am a drug seeker if I ask for oxycontin for breakthrough pain?

[Pamiam412]

Sorry I have been MIA for so long. I have had one of those times when I get so overwhelmed with life that I shut down for a while. A long while this time. I appreciate all your kind words and your thoughts on pain meds for fibro. I looked up the percentage of people with fibro that were taking narcotics and it wasnt very high so i decided to just appreciate the help I do get. I do think more breakthrough meds would be appropriate. Right now I am on Vicodin 5/500 and I only get 60 tabs for the month. So if I dont have to be out and about I just suffer. You had asked about my oxycontin. I take 10mg three times a day. I know its supposed to last 12 hours but it doesnt and I am heading towards some serious pain after about 6 hours. My biggest problem is I get tired so easily. I would rather have prn meds that I could control according to my level of tiredness rather than up the oxy. I do everything the same everyday and I still have times where I crash. Like yesterday at work. About 1030 I told the staff I wasnt feeling well and laid down on the couch in my husbands office for a 15 min nap. I woke up 8 hours later and only cause I knew I had to get home and to bed. I then slept at home till this morning and I was too groggy to go to work today. I hate it when that happens. It is nice to actually sleep cause usually I dont sleep well.
I am so glad to hear you have a good PM doc! I think the advice I would give others is to keep trying different things till you find what works for your doctor. They like to know how it is affecting your life and mine loves the data I print off for her on how I am feeling. Anyway thanks for your response.
Pam

[namnam46]

Pam, you are more than welcome for the responses!! Believe me I know how important it is to have someone answer your responses when you are in pain and need someone to talk too. :)  I'm just happy that I could be of assistance to you and be able to have helped you out.

I'm so glad that you were able to convince your Doctor that Pain Meds would help your Fibro. I'm very surprised that your Doctor had never heard of the Meds being helpful when you suffer from Fibro.  I can't even imagine what it was like before you had the Meds!!  You must have been so miserable before you had the Meds.  Bless your Heart, I can't even imagine what it was like for you without the Pain Meds!!  You must have been so terribly miserable.  You wouldn't even have been able to function let alone been able to have worked at your Nursing job.  You would have been in so much pain that you couldn't even have moved let alone been able to have stood up and helped any patients at your Hospital where you worked each day!!  I can understand how Nurses would feel the possibility of that "stigma" of being labeled a "drug seeker".  It's also, fully understandable as to you not wanting to jeopardize your nursing license!!  That's the most important thing that you've worked long and hard to obtain!!  Everything that you've said and everything that you are feeling, I fully understand.  :)

I'm sure that your doctor's other Patients would give you an award for "opening" up your Doctor's eyes about Narcotics for Patients with Fibro!!  Think how many other patient's she had that were forced to do without Pain Meds because she had no idea that Narcotics helped with Fibro!!  I truly am astounded that she didn't realize how much Fibro can be helped with the correct Medication!!  Good for you for keeping that record and probing to her how much more you could accomplish with help for your pain.  Also, good for your Doctor that she "opened " her eyes to the prospect that "Narcotics" could really be a "God Send" to Patient's with Fibro!!  You did a remarkable job in teaching your Doctor something new that she didn't realize was a help to her own patients!! You showed her something that she didn't have any idea about.  Thank Heavens she was "open" to the idea of "learning" something new that could be of a benefit to her own Patient's.  Not all Doctor's are willing to do that for their Patient's!!  A case of the Doctor listening to the Nurse and not being "closed" to learning something that she didn't think was a possibility!!

I handle my pain because of a Wonderful PM Doctor that my "new" PCP Doctor started the "ball" rolling by sending me to my first Neurologist.  My Neurologist read my file from Tennessee and immediately sent me to the Best PM doctor in the world!!  My PM Doctor immediately ordered 13 x-rays, but even before he got those results he sat me down and said I can tell by the way that you walked in here and by just feeling your spine and reading your charts I can tell how badly you are hurting.  He listed off a number of Pain Meds that I had my choice of that were Long-Acting and I immediately chose the Fentanyl Patch as I have to take so many pills just in my daily Meds because of my Heart condition and other problems that I didn't want to have to take even more pills just to keep my Pain in control.  It was the best decision I've ever made.  Up to that point, I'd only been given Norco 10/325 and they just weren't working anymore.  Therefore, I'm on 87 mcg's every 48 hours. of Fentanyl and Percocet 10/325 3 times a day.  That combination of meds being changed along with the addition of the RFA's has greatly improved my lease on life and has given me a new outlook on life that I didn't have before!! I'm eternally grateful and I never had that option before in my life!!  I'm so grateful to my doctor's!  :)

I try to rest as much as possible and I do exactly what my Doctor's expect of me as I trust them completely!!  I'm so grateful to have excellent Doctor's.  The very best, in all field's, whether it's Internist's, Orthopedic Surgeon's, Cardiologist's or PCP's.  :)

I'm going to be watching for your updates and hope that you will keep us fully informed as to what you are doing and how you are feeling and how much pain you are in.  I'm very concerned about you and what is happening with your back.  

Just know that we are here for you always!!  Whenever you need to talk just let us know and either me or someone else will be here to listen to you!!  There are many people here that are great listeners and that can give great ideas.  One of them is our CL Tuckamore. She will be along here next week and she is a RN like you are.  :)  She knows exactly what you are talking about, also. I'm going to send her this link so that she will see your post.  :)  

I hope that you will have a great "rest of the week-end"!!  Best of Luck to you and I'll look forward to hearing from you!!  I'm thinking of you............Sherry  :)

[Pamiam412]

Sherry,

Thank you for all of your responses! I should know that about the Oxycontin. I have a terrible fibro fog and since I took 2 Oxycontin and they worked I just wondered. I think nurses have a huge fear of being labeled because we are used to seeing drug seekers that the medical community tends to with hold medications even when they are in severe pain. Also I never want to do anything to jeopardize my nursing license. Its hard to remember when I started the pain meds, but I think it was September of last year. I am hesitant to change things up as one little change throws me for a loop. It was such a relief after the pain meds were prescribed as I finally was able to think at work. It probably saved my job. It took me a long time to convince my doctor that I couldnt handle the pain. She didnt believe narcotics worked for fibromyalgia. I finally wrote out what a typical day looked like for me and then a day where I took 2 vicodin every 4 hours for 24 hours. That worked and she ordered the Oxycontin. I went from about a good hour at work and nothing at home to being able to work my 6 hours at work, and get a little bit done at home before heading to bed.

I was so glad to hear that weird contorted positions I wake up in are normal! My mother says she cant stand to watch me sleep because of the painful look on my face.

How do you handle your pain?

[Caryopteris]

Get checked for food allergies like gluten.  Hope you get relief.

[namnam46]

Hi Pam,

First, I want to welcome you to the PM (Pain Management) Forum and let you know that we are glad you found this Forum. We are all CP (Chronic Pain) Patients that help each other with our own expertise and experiences that we have developed through our own CP Issues.

I'm sorry that you are having so many problems with your Flares!! It's terrible when our pain is so relentless and just won't let up!!  I know I just want to climb in bed and not get up at all until it's over.  Unfortunately, that's not always possible to do.

Flares can happen in many different ways for everyone so it's really impossible what's "normal" so to speak.  :(  Is this a "normal" type of Flare for you?  

As far as "waking up in weird positions when you're in pain" I do that all the time!! Unfortunately for me, it's the pain that finally causes me to wake up and then I have to turn over and lay on my back until the pain eases up again.  It's not any fun for sure!!  AS far as the hands over the ears and the clenched teeth, I guess it could be because of the pain or it could be because of some dream that you were having.  It's really difficult to know.  I would think that you would be the best judge of that.  You might mention this to your Doctor and see what he thinks could be causing you to do that.  It's an interesting question!
Sometimes, I think I'm just weird, too, and it's just me.  LOL  

The way I know it's time to increase my meds is when my pain is increased over a period of time.  If it stays increased for a 2 week period or longer and nothing is helping it at all, then that's when I talk to my PM (Pain Management) doctor about it.  Together we decide what is the best solution for me and what will give me the most relief.  Being a nurse, you know that it's not good for you to be in pain that's affecting you everyday, continually, so it's of the utmost importance that you get your pain under control!!

Sometimes, it might not be an increase but a change in your meds that will do the best job of managing your pain.  How long has it been since you've had a change in your combination of meds?  That's something else you might want to talk with your Doctor about.

I really doubt that your Doctor would ever give you Oxycontin as a BT (Breakthrough) med since it is used only for Long-acting pain control.  However, he might allow you to raise the dosage or as I said earlier, change you to a different long-acting med. I believe that 10 mg is the lowest dosage that it comes in, isn't it?  Maybe you need to switch to the 20mg.  Or maybe you need to change the Vicodin to a different BT med or a different strength (you didn't say what strength you are taking for the Vicodin).  It's all something to discuss with your Doctor on your next visit.

May I inquire how long you have been taking this combination of meds? In fact how long have you been on Pain Medication for your pain?  The reason I'm asking this, is because you are concerned that your Doctor might think you are a "drug seeker".  If you ask for the Oxycontin for BT meds he will definitely think it's a "strange" request since it's used only for Long-Acting medication.  If you've been on this regimen of meds for a substantial length of time and haven't asked for an increase then he shouldn't look at you as a "drug seeker" for asking for an increase or change.  :)

I think that it's wonderful that you are working on the Dementia Floor as My Mom passed away from Breast Cancer but also had Moderate Alzheimer's.  I know how much it means to the patient's families to have a loving and caring Nurse to take care of their Loved Ones!!  It meant the world to me and my Family!!  I still remember it and My Mom passed away over 17 years ago!!  

I hope that your Flare-up is over and I'll be looking for your updates!!

Hope you have as "pain free" as possible evening, Pam.................Sherry :)