Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-23-2016, 09:43 AM #1
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Default No sleep last night pain was so bad

I've had bad nights before, but usually by 3 am I can crash. Usually I can take the Percocet early (i.e. at 3 hours) and that will at least knock me out. This time no. I was in so much pain. I couldn't even sit in bed and read. Tears just kept running down my face.

I can't take this. All I have is Percocet for the pain and it isn't helping. The burning is climbing up my leg... I'm so tired. And then lying down brings on the reflux too.
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Old 03-23-2016, 11:36 AM #2
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Quote:
Originally Posted by Becca71 View Post
I've had bad nights before, but usually by 3 am I can crash. Usually I can take the Percocet early (i.e. at 3 hours) and that will at least knock me out. This time no. I was in so much pain. I couldn't even sit in bed and read. Tears just kept running down my face.

I can't take this. All I have is Percocet for the pain and it isn't helping. The burning is climbing up my leg... I'm so tired. And then lying down brings on the reflux too.
I haven't slept through an entire night in over 5 years. Like you, the tears have flowed way too many times. Does your Pain Management doctor know about the extreme pain that you are in and your inability to sleep?

Hang in there. I know that that sounds shallow and of little help, but many of us at this site have been where you are, and we will be there again. Hang in there! Hopefully, your pain will provide you a break from it's intensity soon. May I ask if you have a CRPS Pain breakout kit? Mine is not much but here is what I use:

1. Eye Mask to eliminate all light

2. My Favorite Music Selections available on 2 Channel Stereo or with wireless bluetooth earbuds. Sometimes I crank it just to block out the pain (cranked it too loudly a couple of times. I had to learn my lesson) Other times I need the music to be soft and relaxing

3. Pain Patch

4. Votaren Gel

5. Lots of Liquid to drink

6. Snacks (I try to keep it healthy, but when my pain is over the top, there are times I just go for the junk)

7. Food

8. Elevation Pillows

9. Pain Meds

10. Deck of Cards

11. Chess Board (Can't win, but who cares? It's the distraction that counts)

12. Other things to keep me occupied. Sometimes the distraction is enough to bring down my pain a tad.

13. A nice hot bath

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Old 03-23-2016, 12:30 PM #3
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Keep this documented and call your PM if you have one. We all have nights like this, some of us it seems like it is every night. All of what Spike mentioned is very good. On my bad nights, I will keep my legs elevated, keep the room as dark as possible, work on deep breathing exercises, and listen to something calming, for me it could be music at times, others it would be white noise. Different things work for different people. Some days they just do not work though.

Percocet is not the greatest for pain medication with CRPS. It can mask the pain at times, but being an opiate, causes Glial Cell activity which causes more inflammation and pain. Unfortunately, a lot of PMs will resort to using opiates to treat the pain, mine included. I will admit, they do seem to help. I tried reducing mine down, to try to get off of them completely, as I did not think they were helping, but found out that yes they were helping.

I think I read that your spouse was taking LDN for a while. Try bringing that up with your doctor again. It would mean that you will have to have the Percocet out of your system, but many here swear by it. There are also meds like Gabapentin and Amatrityline or Nortrityline. They not only help with nerve pain, but can help with sleep as well. Again, it works for some, but not for others.

I know from your other posts how much you have going on in your life right now. You need your sleep. Try to find something that works for you.
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Old 03-23-2016, 02:42 PM #4
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I'm on Gabapentin 600 3x a day. I was already taking Cymbalta for depression, but that should be helping as well. Due to my sensitivity to anti-depressants we are leery of changing that. Lyrica and I did not get along well at all (ugh that was awful). I take Topamax for my migraines, but I've heard that could help too.

Usually I can get to sleep around 12 or 1. Worst case is 3. Then after the kids get off to school I can take a nap. But last night was just awful. Maybe I should have taken my anxiety med, that might have knocked me out, but I wasn't thinking straight at that point.

I've emailed my doctor because my next appointment isn't until April 4. Course with this fantastic worker's comp clinic he's only there like twice a month. So I'm hoping via email I can get some advice? Help? somehting. He only gave me the email after the nerve block. But that wore off. All gone.

He used to work at Stanford so he knows the many other options. The problem is getting them approved.
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Old 03-24-2016, 10:15 AM #5
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So last night it was getting worse and worse so I took 1/2 an anxiety pill and at least I was able to sleep.
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Old 03-26-2016, 12:17 PM #6
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Personally I have experienced far too many nights like that. There are a few things I have found that personally help me and some of them have already been listed.

Elavil/amitriptyline works well for many people, myself included. But it is technically an antidepressant so it may not work for you. Is it all antidepressants or certain types? I also take melatonin to help with sleep and it is already produced by our bodies. I have tried Benedryl in the past and it sometimes works for me in a pinch. Doctors have even prescribed Benedryl for sleep because it works and has minimal interactions.

If you decide to do an over the counter medication please check with your doctor or pharmacist to make sure there are no interactions.

One thing I have found helpful is to download apps for relaxation and medications. I use these for sleep and try to use them during my flares as well.

The only other thing I can think of to try and keep a bedtime routine. I know it sounds weird but I have seen it work for others.

Sweet dreams (hopefully)!
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Old 03-26-2016, 02:37 PM #7
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Since I'm already on Cymbalta (an anti-depressant) I'm not comfortable switching it out for a different one. I've had some strong reactions to many other anti-depressants in a few of the different families, so we are sticking with what is working for me.

I do have a sleeping pill I can take, it does work sometimes, but the pain can override it KWIM? The last couple nights have been better.
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