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 10-03-2010, 01:50 AM #2
loretta loretta is offline
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Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
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Quote:
Originally Posted by whisperstothesun View Post
Hello.
I'm new to this forum. I've had RSD, etc. for over 18yrs now. I've had to resort to multi high dose opiod therapy long term. I've been following this protocal for a couple of years now. I have cardiac-adrenal insuffiency syndrome and a shot endocrine system from the stress of years of intractable pain which was poorly managed---partly the fault of opiodphobic Docs, and partly because of my own reservations about journeying on this scary road. Finally I had no choice...this or die.
I want to hear from any others who are doing/using similar approach. Pls respond if you/ve done this or are currently using this approach to manage intractable pain.
I'm having a terrible time with my insurance company. The new health care act is threatening my life. If there are other options for me, I welcome stories from fellow RSDers! thanks! love and light to you all...
Hi Sunshine, I am taking Vicodin 4 per day-6-8 when in high pain or flare.
Lorazepam-anti-anxiety 4mg a day-used to take 8 mg. The calming affect lowers the pain level. Taking seroquel xr and sleeping 10 hours straight has helped my pain level and that is when I was able to lower Vicodin down to 4 a day except for flares. Also Cymbalta works on nerve pain-it is an anti-depressant 120 mg a day. Also has a sedative effect. I take two blood pressure meds. RSD is an autonomic condition so we don't have control over involuntary organs like heart, lungs, kidneys, bladder. The sympathetic nervous system raises blood pressure and the para sympathetic nervous system lowers it. if gets too low can pass out-happened once tome.
You can buy blood pressure kit for $30 at pharmacy.
Also RSD causes no control over body temperature, thus the burning hot spells, and the cold ice spells. Also our immune system is compromised.
I view opiods as a way to have some quality of life. If we have ever had an operation, the nurses tell us to take the meds as directed. Taking the meds correctly, relaxes the body and therefore it heals more efficiently. Skipping meds and getting high pain, tightens everything up and slows down the healing system.
It's because I have this educated Dr. with many degrees that I'm on the right meds and am better now with full body RSD than I was 10 years ago.
Take care, your friend, loretta with soft hugs
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