Littlepaw,
I have read a couple articles concerning pain interrupting our ability to experience REM sleep, which in turn does not allow us to sleep a healing sleep. So I see your point on trying to get the pain under control. I am working on switching when I take the Gabapentin, taking at night when I need it the most. I have found that when I take it with the Oxycodone-Acetaminophen it settles the fire somewhat and I do get the 4 instead of 2 hours sleep. Does this sound like a sound plan, taking it at night as if I'm on 3rd shift rather than in the day? I'm also making a list of questions to ask my doctor when I see him. Thank you for all the ideas!! Your a life saver!!
Dawn

First let me say welcome! There are many people here that are sometime more knowledgeable than doctors when it comes to CRPS.

I am also a WC case so I can relate when it comes to that. They originally paid for all of my treatments and medication, until I had to undergo more expensive treatments. When that happened they decided that the CRPS was not caused by the injury and they should not be held responsible. The majority of WC companies will do whatever they can to pay the smallest amount possible.

As far as the sleep issue goes I have found what works for one person may not work for you. Personally I find meditation to work for me most nights. I also find keeping to a routine can help as well. Some other things that work for me are chamomile tea and melatonin, with Benedryl being a last resort. Of course check with your doctor before taking any medication.

Good luck!

Dawn,

Anytime. We all help each other. What time you take meds can absolutely make a difference. I found I was able to manage my pain during the day with OTCs and activity accommodation IF I was able to rest at night. For a long time that meant neurontin and tramadol before bed. Now the nortriptyline at bed seems to do the job of both though I still sometimes need tramadol if I have a really bad day. Getting restorative sleep has helped me keep my sanity and achieve some healing. I could not have done it without meds at night. For me there seems to be some carryover pain relief into the next morning. Taking them during the day was unappealing to me, I am little, sensitive and need to be safe to drive. It takes time to find out what works, so talk to your doc. Mine were supportive of meds only at night. I can't overstate the importance of rest and stress reduction. Doing too much, going too hard will impede recovery. Being gentle with yourself and your nervous system will help you heal.

Littlepaw

Those terrifying pics are the worst case scenario and are a very small percentage of cases. --So the rarest of the rare.

You won't experience every symptom, all the time. They might come and go to varying degrees. It's also difficult to measure the amount of swelling with the naked eye. I can tell when my wrist and hand swells, but in order for my therapist to document it (especially since I didn't want to be touched there) he used water displacement to measure swelling after certain activities.

You might want to ask for a rx with Melatonin. Ideally, you'll find a drug combo that will reduce (but may not eliminate) your pain to a degree to make sleep easier. I was on Ambien and never felt rested, but with the Melatonin (sorry I don't remember the name) I did! Others things that can help are taking a warm bath with Epsom salts shortly before bed and try exploring music designed to help aid you falling asleep--both helped me.

You're with a therapist that is clueless. If she is unwilling to learn about RSD/CRPS, than it is time to find a new therapist. I hope she is not attempting to put any ice on you? That's a great way to cause additional nerve damage. And I could not handle certain therapists touching me while working on me, while others were tolerable. Too light of touch is excruciating and too rough is as well. Stim was not an option! You might consider pt in warm water if you have that option locally.

One of my pt was disabled herself. She had MS and was in a wheelchair, but pain free. It helped that she validated that what I was going through was something she wouldn't have wanted to deal with. You've unfortunately had the experience of both a disability that you can't hide and now a disability that is invisible. If you unable to return to work, you might consider applying for SSDI. IMO, you should qualify with a Listed Impairment because of your combination of disabilities and should (in theory!) be approved within a fairly short period.

Don't give up hope that your current doc (or perhaps if needed a new doc) might be able to put this in remission for you. Some people respond well to stellate ganglion blocks, others don't. There's also ketamine infusions, and new meds and advances happening all the time, etc.

Thanks for welcome Kris!!! Sorry to hear WC lived up to its reputation! Kills me how they so easily kick you when your down...

Paw,
Awesome to hear I'm not far off on my thinking!! I usually feel like a zombie from the meds and I doubt anything I do will help that, I'm way to sensative to the meds. I'm not sure but I think the stroke I had has something to do with this. Thanks for the validation!!

Lit,
Melatonin, added to the list Thanks!!! I am compling quite a list of questions for my doc, he will be so surprised!! Thank you!!

Welcome Dawn! I'm pretty new here too. Working on figuring all this out as I go. So very thankful for this site and the awesome people here!!

You can definately feel the love!!!

Hi Dawn! So sorry to hear about the RSD, and especially not being able to sleep. I find that is almost the worst part of having RSD besides the pain.

I am now trying ambian. Was a little afraid of it at first, but am getting a solid 4 to 5 hours of sleep with it. So far it is the only thing that has worked. Have tried many many different things too.

I hope you finally find a way to get a few hours.

Please be very careful if you still drive, if you're not getting a full 8 hours of sleep on Ambien.

Allen,
So far I haven't found the right mix yet to get the sleep I so desperately need. And wow 4-5 hours still is rough!! I know I feel a huge difference when I get lucky and hit 5 hours, but still don't feel human...

Take care, and stay strong
Dawn