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 01-29-2013, 08:20 AM #1
rafiki123 rafiki123 is offline
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Default RSD in Remission, New Injury

I contracted RSD in 2002 in my left ankle after a fall in which I sprained my ankle. For two years I was in constant pain, but it gradually tapered off and I have been pain free for about 7 years. Yesterday I slipped on ice and injured my wrist. They didn't see a fracture on x-ray, but suspect there is a hairline one. My fear however, is that the RSD will come back. I am trying not to scare myself, but I can't help thinking about it.

My question is...what can I do to help prevent the return of RSD? Is there anything I should or shouldn't do?

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Old 01-29-2013, 09:07 AM #2
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There are studies coming out of Britain and France about using Vit C to prevent RSD in people with ankle and wrist injuries.

http://www.ncbi.nlm.nih.gov/pubmed/19840748

There are other papers too...
using keywords at PubMed "vitamin C reflex sympathetic dystrophy".

full article:
https://docs.google.com/viewer?a=v&q...kUFWbNVjClS18Q

Since this is rather easy to do with few if any side effects, it might be worth it to try for your concerns.

If you search Vitamin C here you will find some patients using high dose IV treatments, later in the course, which are helping some of them. Antioxidants have been suggested for RSD in the past.
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Old 01-29-2013, 05:41 PM #3
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I completely agree with vitamin C therapy. You really have nothing to lose in my opinion. I am unsure about high dosage, but I would not hesitate one bit to take 500 mg daily. In the article I read, a daily dose of 500 mg for at least 50 days is recommended. Personally, I take that amount every day.

Then try as best you can to relax and keep a positive attitude. The importance of the mind/body connection is a proven one.

Good luck to you!
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Old 01-29-2013, 09:19 PM #4
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I agree with the advice given so far. As they have said there are various studies which have indicated that vitamin C has a protective effect and it is very safe. It seems that taking it for a period of 50 days is supposed to be helpful.

Have to discussed your higher potential risk of FRPS with the treating orthopaedic consultants and/or physio therapists who may be involded in your care? One risk for CRPS is a period of immobilisation such as with a cast or brace. You didn't say whether you have had the wrist immobilised. If you have, highly recommend discussing this with the ortho/PT as a matter of urgency to see whether (a) it is really necessary; (b) the risks of keeping your wrist mobile outweigh the risks of compromising your suspected hairline fracture; (c) whether they can look at an option to keep the immobilisation to the absolute minimum period even if this is shorter than might be ideal given the risks it creates for you; (d) whether there is an alternative type of casting, brace or support that could be used to protect your wrist but to give more movement and less immobilisation and (e) whether there are wrist and hand exercises you can do several times a day to make sure you are keeping all of your hand, digits, wrist and elbow as mobile as possible without compromising the possible fracture.

It's critically important that you keep a close eye on the tightness of any cast or brace - that may or may not be a risk factor for CRPS. Its not that clear whether the pressure from a too tight cast contributes to CRPS or whether its the swelling from the CRPS that causes a cast to feel too tight. If you notice it feeling too tight or excessive swelling don't hesitate to go back and seek advice immediately. Then run through all the stuff I mentioned above to see if there are any other options. Similarly, if you find your fingers turning blue, purple or black as soon as you drop your hand down, that could indicate a problem so seek advice.

Finally, it is essential that you have sufficient analgesia. Another potential risk factor for CRPS is insufficiently controlled acute pain. If you are able to, given your higher risk of CRPS, you should ask your ortho or GP to consider a neuropathic pain drug on a prophylaxis basis. A drug like gabapentin can be given to pre-empively control or 'dampen' any neuropathic pain for the duration of the healing period. You should also make sure you are not just putting up with any pain from the injury - this is not sensible. You may need to have either a larger dose or a more powerful painkilling medication than a person with the same injury who doesn't have your CRPS history, just to try to minimise your risk. You may also need to take a painkiller for longer than someone else.

Hope that all helps. Sorry it's a lot but these are all the things you could look at and discuss with your doctors to try and minimise the risks. Theres not a massive amount you can do to prevent CRPS but these are the things which might reduce the risks based on things that are thought to contribute to triggering the condition.
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Old 01-30-2013, 03:29 PM #5
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Thanks so much for all the advice. I did tell the doctor who treated me about past rsd but she wasn't familiar with it. I am in a brace, but can remove it. I am keeping the pain under control, and have started the vitamin c. I am already taking Topamax for migraine prevention, so that should be helpful as well. What I really need to do is just not worry, but it is hard not to. That was a very difficult time in my life and I don't want to have to go through that again.
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Old 01-30-2013, 06:42 PM #6
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Quote:
Originally Posted by rafiki123 View Post
Thanks so much for all the advice. I did tell the doctor who treated me about past rsd but she wasn't familiar with it. I am in a brace, but can remove it. I am keeping the pain under control, and have started the vitamin c. I am already taking Topamax for migraine prevention, so that should be helpful as well. What I really need to do is just not worry, but it is hard not to. That was a very difficult time in my life and I don't want to have to go through that again.
Just a thought, might you consider temporarily taking an anti-anxiety med like lorazepam or zanex? at least long enough to get you thru till you feel comfortable the rsd doesn't come back with new injury? Hope the best for you. loretta
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Old 01-31-2013, 10:46 PM #7
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I can't remember where I saw this posted in the last couple days, but it is a great resource.

It notes that we should use Calcitonin Nasal Spray to prevent spread before invasive procedures.

I have not had time to really read it and understand all of it, but it also talks about vit. c and things to do to prevent spread with new injuries.

I saved a copy to my computer so I could put it on my iPad that I take to doctors offices with all my other info.

https://www.edsers.com/uploads/RSD.pdf
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Old 02-01-2013, 07:26 AM #8
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Excellent link daylillyfan! I hadn't seen that one before. Lots of great information in that article; very comprehensive.

Robert Schwartzman is a co-author and arguably is one of the most knowledgeable professionals regarding CRPS.

Bookmarked......
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Old 02-01-2013, 05:30 PM #9
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Just to mention that after that shortly after that paper was written, calcitonin nasal sprays were completely withdrawn across the whole of Europe because all of the clinical trials demonstrated that they are linked to raised risks of cancer. Canada are reviewing their position but the FDA don't seem to have decided to withdraw.

It's a risk that's important to weigh up particularly in circumstances where you are not someone who already has a diagnosis of osteoporosis where, arguably, the risk might be more worth taking. If you already had risk factors for cancer that would be something else to weigh up.
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