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 03-29-2013, 09:47 AM #1
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Sorry to hear of your pain and new diagnosis. You definitely need to see a pain management specialist who is very familiar with treating RSD/CRPS and understands the pain associated with it. They will know better on how to treat you - meds, etc. I personally see my family doctor and a pain management doctor. My family doctor manages all of my medications, unfortunately I have lots of allergies so I am limited to what I can take. I have read on these boards that many have had success with Cymbalta, Lyrica, Amitriptyline, Lidoderm Patches...these options would give you a place to start. Just do not ice the area, that would do more harm than good.

Wishing you the best...
Nanc
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Old 03-29-2013, 11:24 AM #2
Brambledog Brambledog is offline
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So sorry you've got this horrible condition. It's bad enough without having docs who don't take it seriously and make you feel even worse than you need to....

Definitely IGNORE any doc who a) doesn't understand CRPS, and b) doesn't take the pain it causes seriously. There are many things associated with CRPS, pain and depression are the two major things that need addressing , and a good doc should refer you urgently to a pain specialist who has experience with CRPS, and a psychologist to help you with the feelings that come from constant pain and the associated life changes.

You are not a scammer, you deserve to get proper treatment that addresses your pain. Definitely ask for a nerve pain med, like amitriptyline, Gabapentin or pregabelin (Lyrica). I started on the ami and it helped within a few days. Nerve meds can really help the pain levels, surprisingly most traditional pain meds aren't that great at tacking CRPS pain. In the meantime, try getting some Epsom salts (unperfumed) from a chemist or online, wrap a few tablespoons in a damp tea towel, and place on the worst area for a while. Epsoms work on the calcium channels and block pain signals. They really are amazing, so get some ASAP and try - they aren't expensive. Use hot or cold water to damp the cloth depending on whether your ankle is feeling hot or cold at the time - ie if it feels cold, use hot water to damp the cloth.

Read and research all you can, as knowledge is power with this, mainly because so few medics seem to know the danged thing! You as the patient need to know what you want to try in terms of treatment. It seems harsh I know, I thought the docs would know what to do, but sadly there are plenty who don't know best, and you will have to push for good treatment.

In the meantime, keep a diary of your symptoms and pain levels, and take pictures of any physical signs like swelling, rashes, and skin mottling. Take your diary and pics with you to the doc, and keep believing in yourself. Your age should have nothing to do with how you are treated. Shame on any doc who makes you feel it is an issue...

Hang in there. This time when you're newly diagnosed and seeking treatment is the toughest, it WILL get better soon. Try to stay positive, and keep your foot moving small amounts regularly, as disuse makes CRPS worse.

Give yourself some treats and don't give up. You're not alone.

Bram.
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