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 05-19-2013, 04:35 PM #1
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Confused Developed CRPS 5 mos ago, thought getting better but yesterday was horrible

Hello

I developed CRPS following wrist surgery in December 2012. It has been fairly mild. I have had constant pain but not unbearable pain. I've had some burning sensations. My hand and arm are still swollen and I have unusual hair growth mainly around my wrist. I also have intermittent sensitivity to touch in my wrist. The pain has gradually spread up my arm and now I have pain from shoulder to finger tips.

I have been going to physio for a few months now and my range of motion has been slowly but steadily improving. I have been feeling pretty positive. The doctors (surgeon and pain specialists) said my case was not severe and they seemed to think I had a good chance of recovery. So did I.

I had a steroid injection in my shoulder a few weeks ago. This gave me fantastic range of motion in my fingers for one day and seems to have made some small lasting improvement. It didn't change the pain though.

I had a stellate ganglion block on Wednesday, 15 May. It didn't seem to help the pain but gave me a bit of a strange tingly feeling.

Then yesterday. Yesterday was horrible. Just horrible. Intense burning pain, like fire in my veins in my entire arm, particularly intense in my shoulder. I also crushing pain (mainly in my forearm) , and sharp stabbing pains and muscle spasms (mainly in my hand and wrist).

Today has been a much better day than yesterday but worse than Friday. Still, I'm glad it wasn't a repeat of yesterday.

Now, I'm confused. Although I knew it might not get better, I had been thinking it would. I saw the range of motion coming back and thought the pain would gradually go away. My case was only a mild one. I thought I just needed to keep up with the exercises, do what the doctors said and hang on until it got better. But after yesterday I just don't know what to think.

I am sorry. I know most of you are far worse off and have been for far longer so I don't mean to whinge.

I don't even have a clear question to ask. I am just really confused and, I'll admit it, scared.

Thanks for listening (well, reading).

Kim
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Old 05-19-2013, 08:19 PM #2
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Hi Kim,

My RSD is a lot like yours. I had a cyst removed from my wrist in Dec. 2010. I have constant pain and burning from my fingers to my shoulders then down the other side. My case is mild compared to many other sufferers. It doesn't sound like you are taking any meds for your pain. I take Cymbalta ( for the deep down in my bones pain) & Nortriptylne for the burning pain. For flare ups ( sounds like you had a nasty one ) I take Gabapentin & Tramadol. All of my symptoms started off slow and one at a time. Even on my worst days I know it's nothing compared to what most other sufferers feel. It has taken these past couple of years for my pain to continue to develop and spread. Talk to your Dr. about your constant pain and definitely about your flare up. I suggest working with your Dr. to find a Pain Management Dr. who is familiar with your diagnosis. Please don't ever feel like you are whining!!! Your pain is real and it has real side effects. I would be happy to answer any questions you have, or just lend an ear if you need to vent or "whine". Gentle hugs to you Corey
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Old 05-20-2013, 02:00 AM #3
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Don't worry about whining - we all need to do it sometimes, and you would be inhuman if you didn't. I'm so sorry to hear about your awful day I don't have any experience with that block - we just had spinal blocks (lumbar?) and Bier blocks - but I'm sure others here have had it.

I echo the "gentle hugs" Hang in there and find a good doctor!
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Old 05-20-2013, 06:49 AM #4
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Quote:
Originally Posted by KimA View Post
Hello

I developed CRPS following wrist surgery in December 2012. It has been fairly mild. I have had constant pain but not unbearable pain. I've had some burning sensations. My hand and arm are still swollen and I have unusual hair growth mainly around my wrist. I also have intermittent sensitivity to touch in my wrist. The pain has gradually spread up my arm and now I have pain from shoulder to finger tips.

I have been going to physio for a few months now and my range of motion has been slowly but steadily improving. I have been feeling pretty positive. The doctors (surgeon and pain specialists) said my case was not severe and they seemed to think I had a good chance of recovery. So did I.

I had a steroid injection in my shoulder a few weeks ago. This gave me fantastic range of motion in my fingers for one day and seems to have made some small lasting improvement. It didn't change the pain though.

I had a stellate ganglion block on Wednesday, 15 May. It didn't seem to help the pain but gave me a bit of a strange tingly feeling.

Then yesterday. Yesterday was horrible. Just horrible. Intense burning pain, like fire in my veins in my entire arm, particularly intense in my shoulder. I also crushing pain (mainly in my forearm) , and sharp stabbing pains and muscle spasms (mainly in my hand and wrist).

Today has been a much better day than yesterday but worse than Friday. Still, I'm glad it wasn't a repeat of yesterday.

Now, I'm confused. Although I knew it might not get better, I had been thinking it would. I saw the range of motion coming back and thought the pain would gradually go away. My case was only a mild one. I thought I just needed to keep up with the exercises, do what the doctors said and hang on until it got better. But after yesterday I just don't know what to think.

I am sorry. I know most of you are far worse off and have been for far longer so I don't mean to whinge.

I don't even have a clear question to ask. I am just really confused and, I'll admit it, scared.

Thanks for listening (well, reading).

Kim
Hi Kim,

I'm in a similar position to you - I injured my wrist after a fall but seem to have got off lightly compared to many on here

I seem to have periods where I'm making a recovery, only to have a setback and have a return of the pain. It then becomes cyclical - I can't sleep due to the pain, the lack of sleep means I feel more pain, etc, etc.

I hope things work out for you - stay positive. If there's anything I can do to help, shout!

Keith
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Old 05-20-2013, 04:58 PM #5
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Hi Corey

Thanks for your support and for sharing your situation. I am not currently taking anything for the pain, I'm just white knuckling it. I don't think I can do that much longer.

When my cast was removed following the surgery, I was given a couple of weeks worth of tramadol. After the CRPS diagnosis, the pain specialist gave me pregabalin which I tried for a month but it didn't seem to do anything at all, except make me drowsy.

My stomach doesn't tolerate paracetamol (similar to acetaminophen) or ibuprofen very well. I haven't tried anything else. For work I need to be very clear headed so I am worried about taking anything. Of course, the pain isn't exactly leaving me clear headed. :/

I have follow up appointments with my surgeon and my pain specialist next week and I will have to have a serious talk with both of them.
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Old 05-20-2013, 05:05 PM #6
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I just want to say thank you to all of you. It helps so much to be able to talk to people who are in the same situation. I really do appreciate your replies letting me know it is okay to vent.

For me, it is still early days with this. I have just gotten to the point that I am thinking this might not get better. Although I'm sad that others are suffering from this and some far worse, it is such a comfort to know that my fellow sufferers will be there for me as I try to process what it happening.

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Old 05-20-2013, 05:17 PM #7
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Have you tried Magnesium supplements? I've found they have improved my condition somewhat.
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Old 05-20-2013, 05:22 PM #8
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I have not tried that but I will. Thanks!

I have also read posts that mention vitamin C, so I will try that too.


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Have you tried Magnesium supplements? I've found they have improved my condition somewhat.
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Old 05-20-2013, 05:26 PM #9
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Originally Posted by KimA View Post
I have not tried that but I will. Thanks!

I have also read posts that mention vitamin C, so I will try that too.
I take Vitamin C in the morning, Magnesium at lunch time and B complex in the evening.

How much it has helped my CRPS is debatable, but I've not had a cold in 8 months!
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Old 05-20-2013, 05:28 PM #10
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Quote:
Originally Posted by KimA View Post
I have not tried that but I will. Thanks!

I have also read posts that mention vitamin C, so I will try that too.
Holland and Barrett are a good source, as they often have their penny sale, which means you can buy one of the supplements for 1p!!
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