hi seaglass. sorry you have rsd. i've had it for over five years now and i learned that it takes some trial and error before finding the right procedures and meds to take to help manage my rsd pain. and remember to let your pt know that ice is bad for rsd. it can further damage the nerves. it happened to me because my pt didn't know that and neither did i at the time. now i know and don't want anyone else to suffer further nerve damage like i did. just try taking it a day at a time and know you are not alone. you found a great support group here at NT. i'm sending soft hugs your way.

WOW! Thank you all for support and great advice.
I have to say I am lucky, because for this round of PT, I actually had a therapist that has experience with CRPS patients. I am moving my arm better, but I still can't figure out why the flare up happens and when it will happen. This morning for example, my hand has been fine, then 2 hours after I woke up, it just began with the pins and needles, color and temp change. I wasn't doing anything at the time, just sitting down watching the morning news.
It's strange because sometimes I feel like it is fine, then BOOM, a flare up that will last for hours on end. Has this happened with a lot of you??

CRPS seems to have a mind of its own sometimes. There are things that we all do that we try to avoid that we know will cause flares. For some of us, those flares can last for days, weeks, months. Some of those things are simple, such as what we eat. We like to indulge in those things from time to time, but we usually end up paying for it. There are times that it just shows up for no reason at all, and seems like it never wants to leave. And of course, pushing too hard, even not pushing hard enough can cause flares. You have to find an equal balance.

I too am a fellow right arm/ hand crps member, the best thing to do is to desensitized, at least the best u can. I still need soft soft clothing over my arm, I've also found when real bad shocks happen lidocaine 5% gel works awesome but it's greasy so we cover it with soft gauze rolls which I found really cheap on Amazon.com, I also have a bio brace that goes the entire length of arm that has super soft fleece inside, it was recommended from orthopedic guy who makes my inserts for my shoes. I lived in a sling for over 6 months, and they originally thought tendonitis so I was also in a brace which made mine worse. Another good thing we use is baclofen not flexeril. Flexeril wasn't working good and left me Ina fog with light headedness. It did however sleep better with it but I slept too much. Warm showers work good as long as you can attach a different adjustable shower head, on bad days a light mist, try working on desensitized get in shower with the adjustments. Always use arm as much as you can without pain, I can now almost 5 years later lift 3lbs on a good day without using rest of body for support! I once held my grand daughter against my body when she was 10lbs.good luck it sucks I know. Msg me anytime. Check the spoon theory it's a good read too.

So I have to ask, and forgive the question if it seems rude. Are you or any of you able to work??? I have no idea how long I will be out on work comp and somedays I feel like I might not have a job again. Last night I was at my sisters house, for dinner and friends that came in for a visit. My hand and arm were so cold, I was sitting on the couch with a soft blanket over my arm. It lasted about 3 hours, and worse... My sister had to cut my chicken for my, I couldn't do it.

Seaglass,

I was terminated from my job and in retrospect it was probably better for me. My workplace could never have accommodated me and in the end this was a blessing, because I think it is going to take me much longer than I anticipated to regain enough strength to do every day chores.

Try wrapping your cold limb in thin memory foam, maybe you could make a sleeve and a mitten. I used a heating pad and electric blanket on high this past summer, I still resort to this duo on certain days, but I have found that memory foam slippers helps my foot warm up so I am not chained to an electric outlet all day.

Seaglass,

Try not to get too discouraged. It may seem like forever since your work injury but 4 months out is not very long and CRPS recovery can be slow. Push for the neuro appointment or even better pain management who could do blocks if you are interested (there are risks and they're not for everyone) or ketamine if indicated. Some pain management docs will order nerve conduction studies or imaging if you haven't had them done to rule out and identify any treatable problems.

We have members who work and members who don't. CRPS is a spectrum and has highly variable presentations and outcomes. The people doing the best may not be on a forum. I would make the assumption that our population is skewed.

Whether you get back to your work may depend on your improvement, the type of work and possible accommodation. You may not know for a while.

With my CRPS foot I walk every day, stand to make dinner, drive, go to the grocery, workout, do yoga, stand in TSA security lines. I went to a museum last week and stood and walked around for a good hour. That is up from only being able to stand 5 minutes in the beginning - and that was pushing it and in tears. Yes, I still have pain flares sometimes and I pull back then. But overall my function is way up from where it was in the beginning when I couldn't put my foot down at all.

Be patient and kind with yourself and your arm and keep trying treatments. You might try a lidocaine cream for the hypersensitivity like Mommystime suggested. Aspercreme makes a nice non-greasy one. Other topicals may help too. I used one with ketamine, gabapentin and ketoprofen and really liked it. I also did poorly on gabapentin oral but did fine on a small dose (10mg) of nortriptyline which took the edge off the pain and helped me sleep. Oral sympathetic blockers like clonidine are helpful for some.

When you flared while reading the paper, did you have any coffee that morning? Caffeine is a vasoconstrictor and some of us are sensitive to it. I had to cut it out for over a year before being able to add it back in.

Hang in there,

I am unable to work out of the home, but I also have other medical problems, such as degenerate disc disease and questionable stiff person syndrome