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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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07-05-2013, 12:05 PM | #11 | ||
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I say "my injury triggered a rare disease in my entire nervous system". Im almost full body after 6 months and the thing people cant understand is how my hand could make my legs not work. People also pay attention to the word Disease, esp more than they do the words condition or syndrome. I think perhaps these two have become trivialised by how broadly they are used in modern medicine.
If I go any further, I will say it causes me also of pain and that I have a lot of similar neurological symptoms to MS! I do so thats not a lie, plus it explains my tremors and weakness. People know about MS so it gives them some direction on how seroius it is and what sort of disease it is. I also mention something like my NS is going crazy and is attacking its self, that sort of thing. I just find a few key words help show how serious it is. and if you cn keep it limited to a few sentences it wont take so long to tell every one. I understand how you feel, who can be bothered, the story gets a bit old for us and most of the time they dont get it. I got mune from a burn injury, so if im not in the mood i cam just say nerve damage and leave it there. Good Luck. also Im in South Australia, where abouts are you? |
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08-30-2013, 01:19 PM | #12 | ||
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Newly Joined
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I need to say thank you so my for this I was dx with Reflex Sympathetic Dystrophy around 2009 after an old southern garage door collapsed on my shoulder and back ripping my brachial plexus and stretching other nerves like kids do with play-doe along with bone damage to my left shoulder and back, affecting my left arm and hand as well in July 2006 when I was a fireman, which the Dr here did not figure out the damage to my left side and spine until March 2007 they thought it was just bruised, most of the time I have been able to cope with it, with ups and downs, recently I told they are relocating me to a different position at my job because of the workforce reduction (not by choice) and it is one that does not allow for movement much if at all, after 1 day of training in the job so needless to say it has set me way back to intolerable uncontrolled pain, people have been asking what is the difference from the one you have been doing since you had to leave the fire dept. to know and alls I could tell them at the time is the one I have been doing I could move when I needed to with not much problem, some did not understand why I got up and moved but frankly I did not care. Now trying to help others understand what I have not had to share before has been very hard. So thank you so much for what you wrote.
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08-30-2013, 03:21 PM | #13 | |||
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"Thanks for this!" says: | Brambledog (08-30-2013) |
08-30-2013, 04:42 PM | #14 | ||
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Nawwwww thanks Vrae, I really needed that smile you just gave me!
And may I say....ditto Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | Vrae (08-30-2013) |
08-30-2013, 05:01 PM | #15 | ||
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Elder
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I know how hard it is to explain to people, what our medical conditions are. Just be honest, and tell them. Love goes a long way toward understanding. Family should be the ones to support you. I hope your pain level goes down. ginnie
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