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

Even if you used to be fine on 6 hours, that might no longer be the case. If pain is causing a disruption in REM sleep, 12 hours might not leave you well rested.

I drive, but not if im feeling weird. It aggravates all the non drivers, but gotta be safe.

So far I havent slept walked, nor went and cleaned out the fridge, nor the neighbors fridge and woke up somewhere other then my own bed LOL!!

Welcome!

My orthopedist, an RSD specialist, told me that restorative sleep is the most important part of recovery. As my sleep diminished, my RSD got worse. I hope you find a solution. Gabapentin often has a side effect of drowsiness, so taking it at night may help. I take it 3 times a day, which helped a lot with pain. Nortriptyline also has the side of effect of drowsiness and it interacts with gabapentin to amplify side effects - so taking both at night really knocked me out and I struggled with insomnia before the pain. I would consider asking your orthopedist about nortriptyline as it also helps with pain and can in some cases help with mood, though it's no longer prescribed for mood alone. Melatonin is also a good option, since it's natural. Artifical sleeping aids, like ambien, have been shown to produce little REM sleep, which is necessary for restoration and recovery, so if possible, avoiding these are good, though any sleep is ALWAYS better than no sleep. I have started doing yoga nidra or evening relaxing yoga before I go to bed - it's a yoga that has you lie down and it walks you through releasing stress. It's has really improved my sleep now that the medication isn't enough. Others have made wonderful suggestions as well - warm bath (proven), meditation (proven), routine (proven), etc.

When I was first diagnosed, I didn't have all the symptoms either. I actually had a doctor refuse to perform my first nerve block because he said I didn't have enough symptoms. Many of them came later for me, some still haven't. My swelling was always mild and if you didn't look at my other foot, you wouldn't have realized my injured foot was swollen. As others have said, everyone is different and this condition progresses differently in everyone.

I can relate to you wanting to hide pain. That doctor who refused to perform my first nerve block said I wasn't in enough pain and it was because I didn't scream out when he touched me. I wanted to, but I am also so used to hiding my pain. However, physical therapy should NEVER cause you that much pain and it's important to find a way to ensure that you receive the care you need. Can you bring a friend or loved one with you who is willing to advocate for you? I did to my appointments with my first orthopedist who wasn't listening to me about my pain. Bringing my advocate finally got him to take me seriously and diagnose me with RSD. If not, do you feel comfortable talking to your orthopedist about this? My current orthopedist, an RSD specialist, has been willing to talk with my other doctors/ therapists on my behalf about RSD and what I need. Yours might be willing to do so as well. I know it doesn't seem worth it to switch PTs right now because you only have a few sessions left, but if this PT is causing damage, it is worth it to switch. Even if the PT is not causing damage, it might turn out that you are given additional PT sessions and then you have to be in pain longer. Trust me, I am one to simply push through the pain, but in the case of RSD, that usually means more and worse pain. I do very much hope you can find a solution here.

I haven't had regular stim, but I used a bone stim when my fracture wasn't healing and it was extremely painful. I have no idea if it was harmful, but no one should have to go through that pain, even if there is a small benefit. I would consider discussing this with your orthopedist and see if s/he wants you to use it.

I have had one sympathetic nerve block and it didn't paralyze my limb. I would ask more questions about what the doctor is considering doing. It shouldn't paralyze you. It should just block one part of the nervous system - the one causing pain (or the one suspected to be causing pain, it doesn't in all RSD cases). I'm now scheduled for a series of nerve blocks and have not been told that at any point, they are expected to cause paralysis. Was it mentioned as a possible complication or as an expected outcome? I can see it as a possible complication, but it's a very low risk.

I sympathize with your questioning of whether it's worth it to get up in the morning. I have struggled with this condition for 8 months and I am very much struggling with the same question. A few thoughts on this. 1) there is hope still for better treatment. It sounds like you aren't on many medications to deal with this condition yet, so there is hope that a better drug combination would be useful. My orthopedist strongly believes that opiods like Oxycodone-Acetaminophen do not help for RSD. I was on two in the beginning and they really messed me up. I was so much more clear headed when I got off opiods and there was no change in my pain. I take 900 mg of gabapentin 3 times a day, 50 mg of nortriptyline at night, 220 mg of naproxen sodium 3 times a day, many vitamins for inflammation and pain, and I used to take calcitonin. If this medication combination doesn't work, there are still other options my doctors have discussed with me like Lyrica and Cymbalta. Don't give up yet as not all the possibilities have been exhausted. 2) are you seeing a therapist? Nearly all patients with RSD experience some level of anxiety and/ or depression because of this condition. RSD is often in the sympathetic nervous system, which is the fight or flight system and directly related to anxiety. I myself have struggled with anxiety since pretty much the beginning and now I'm starting to struggle with depression. I am seeing a therapist and it helps. I didn't click with my first one but I have with my second. It's okay to not settle on the first doctor - personality does matter. 3) i have tried to do things that make me happy, even if they are small or "childish." For example, I have started coloring in children's coloring books and watching kid comedies. They make me feel better on the worst days. I've also tried to spend time with friends, though this has been really hard. And I've tried to do some hobbies, like crafts and art. This can help a lot and give one purpose to get out of bed in the morning. 4) as much as possible, try very hard to not think about how bad CRPS can get. Those are the rare cases. According to my orthopedist, who's on the RSDSA board, 80% of people report being essentially pain free after 2 years of treatment (they may need continued treatment to be pain free). It can get better. Now I say this as someone who very much looks at the worst case scenario, but with this, I found it debilitating. Try to stay focused on what you can do and not worry about what you can't control. Worry makes all of this worse.

I hope this helps. If anything I said doesn't, then disregard it.

Just real quick--swelling isn't always noticeable to the naked eye.