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 Dawn.

I find therapy to be useless. I get upset with the therapist because she does not believe RSD is the problem, and during therapy she will firmly grab my shoulder to correct the angle of it while I'm lifting weights to strengthen my arm, this about drops me. She is convinced that I'm just pinching the nerve because of bad position. I try very hard to deal with the fire this immediately causes and not scream bloody murder, becuse I know she does not believe. I'm not sure what I can do to convince her?? I had to beg with tears in my eyes to stop putting stim pads directly over the area because that was killing me. stim is torture but she will not stop using it. Anyone else have issues with Stim?

I hope I'm posting this in the right area, if not please let me know.

Any advice would be highly appreciated!!!

Thank you,
Dawn[/QUOTE]

Hi Dawn,

I couldn't help but notice you tag yourself Scubaforsythe. I don't know if that means you're a water baby, but if you are, I have found the most helpful physical therapy I do takes place in a pool.

I got RSD in 1990 following surgery on my left hand and over the years I have avoided additional surgeries (and I believe 'spread') on my shoulder and lower back by setting up a gentle rehab program in the pool. Unlike normal people, the rehab took months and months of gradually work, increasing my range of motion, endurance and pain tolerance, which I did and I got full use back.

While I never got full function back in my hand, it did improve, too. At first I couldn't use my arms or hands in the pool at all. I just kicked with my legs and feet, but later I could use my hands as fists and then eventually I could use my hands as I did freestyle, breast stroke, back and side. I always had to break it up, but as I did it more and more, I could use my hands more and more in other occupations -- writing, gardening, cooking. At the beginning I could tolerate anything touching my hand.

Swimming also gave me such peace of mind.

As you already know from your stroke, learning to accept not having your old life back is the challenge, but there is no reason for a PT to cause you additional pain.

This past year I spoke to a expert at NIH about the CRPS that developed in my foot, because of a Morton's Neuroma. His best advice. No pain flares. Be patient. Recovery is slow and gradual.


Best,
Darcy

Lastly, everyone's symptoms are different but I never had swelling of any magnitude either. I do have pain, temperature and color changes. Take a look at the Budapest Criteria and see where you fit. Keep taking care of yourself. Take what you need to manage pain but remember that there are a lot of med options. My mood went to hell on neurontin which is great for many people. Nortriptyline at bed happens to be better for me. Get your workup to be sure they didn't miss anything and DO NOT GIVE UP. Odds are in your favor to improve. Most people with CRPS get better over time. Stanton-Hicks and many other bigwigs support this.

Hi Little Paw,

Who is Stanton-Hicks? And, has he or she published anything about this? I'm just curious. If it's anecdotal that's fine by me, but I've always wondered if there has ever been any long term follow-up of CRPS patients. Getting better over time is certainly my experience of CRPS. Mine was diagnosed following hand surgery 25 years ago.

Thanks,
Darcy

Hi Darcy!

Dr. Michael Stanton-hicks is at Cleveland Clinic. I have not been there. He does loads of research and publishing. Has been at the CRPS thing a long time. The 80% of people get better concept is on an "Ask the Expert" interview that comes up when you Google Dr. Michael Stanton Hicks and CRPS. He recently did a CME conference in 2014 for pain physicians in Las Vegas and gave lots of great info about treatment paradigm. I will try to dig that up and post a link. I also really like what Dr. Pradeep Chopra has to say. He has a great talk on rsds.org right now. Interestingly says SCS is a no-no if avoidable. Seems conservative, wholistic and optimistic. I wish he were in my neck of the woods. My neurologist adheres to the most people get better over time philosophy, my physical medicine & rehab doctor does too. I like experts who don't tell me I'm totally screwed.

Littlepaw

Ugh the link is really convoluted and I can't even get it all. Lots of "hicks20%....blah,blah,blah!"

I found the actual PowerPoint used in the conference by googling the following - Phenoxybenzamine and Stanton Hicks. It is the first result that comes up from cLeveland Clinic Continuing Ed. Great suggestions in here that probably none of our doctors have ever heard of...like Phenoxybenzamine.

I got on this because I was looking at oral sympathetic blockers since I don't want the nerve block. I haven't tried this yet but have it in my back up plans if I don't shake this thing soon. Really good data on this med. Sad thing it's not available in US as a generic and brand is 3k per CVS. Ouch! I found generic in Canada for $106.00. You do need a script, but it's an old drug and is used for raynaud's so plenty of known history.

So nice to hear of someone getting better over time! You are my hero...

Littlepaw

Me, too. You have to have hope.

Thanks, will google Hicks and thanks for including Chopra's name, too. Right after, my second CRPS dx I went to RI to see him. He was great and for more than a year I did the LDN, and am doing ultra low dose now, but so far there has been no functional improvement. I still can't walk for more than 15 minutes without getting into a big flare.

It's a whole new world this time around. I am so thankful that many of the experts are posting links to their video presentation. It means a lot to learn from doctors who treat more CRPS patients than anyone. Doctors with warnings about what not to do. While I don't feel as alone as the last time, I am saddened by how little progress has been made in this disease.

My job now is to find a real time, in place doctor where I live. All I can find are doctors who want to do blocks, which never worked the first time, or doctors who want to do an SCS, which seems like the scariest thing in the world to me. I always felt I managed my disease the first time around as well as I did by doing less after the first surgery.

Sounds like you are doing a terrific job getting better.

Best,
Darcy

Many have given very good suggestions already. For restful sleep, I swear by Trazodone (Rx). It's a very old school antidepressant, but at much less than therapeutic doses. I take 50 mg 20 minutes bf I want to go to sleep, but many take double that. It isn't known for causing grogginess and is very cheap to buy since there are no patents.

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.