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 03-17-2016, 04:42 PM #1
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Hi Seaglass,

Keeping your positive attitude is a big help on so many levels. And there is reason to hold onto hope, 80% of people with CRPS improve over time according to Cleveland Clinic's Dr. Michael Stanton-Hicks who does a lot of the CRPS research.

It is important to hang onto your recovery and continued care as well, like a bulldog sometimes. Identifying and treating any underlying pain contributors can make a huge difference in your outcome. Please push for any workup that you need such as Nerve Conduction Study or imaging.

I hope that you are able to get what you need soon. Keep doing the things you are able to without flare and take exceptional care of yourself. It is hard in the beginning but there is life after CRPS and treatments that help. It does take some time to find the ones that work for YOU. So keep hanging in there and come back to let us know how you're doing.

Sending healing thoughts,
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Old 03-17-2016, 07:00 PM #2
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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.
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Old 03-18-2016, 09:52 AM #3
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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??
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Old 03-18-2016, 11:58 AM #4
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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.
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Old 03-18-2016, 09:08 PM #5
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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.
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Old 03-19-2016, 08:30 AM #6
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Quote:
Originally Posted by mommystime2 View Post
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.
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Old 03-19-2016, 02:54 PM #7
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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.
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Old 03-19-2016, 09:11 PM #8
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Quote:
Originally Posted by Seaglass1972 View Post
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.
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
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