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

Hi Sunshine, If you are having trouble with insurance company. opiods like vicodin are not much money. If you can afford it, bypass the insurance company and pay in cash. I don't have insurance as of a year ago. your friend, loretta

Sun,
I'm going on 28 years with RSD/TOS, then another accident in 98 caused a TBI, and four discs, Sleep issues are terrible as well as headaches.
I've been on methadone about 20 years (It took 7 years for a dx). I started @ 60mg. went down to 10-15, second accident, up to 100, now about 60.
Cymbalta, diazepam, Zanaflex for sleep. And, Migraine meds.

Methadone is very inexpensive, and I wouldn't want to be without it.

You're right, the health legislation seems to have been permitted basically for big business, (which is whom our government works for) so our ins. Co's. could stick it to us a little more. I'm afraid.
Since our President has never held a job, or run a business in his life, I'm VERY afraid, but that's another subject. (Hitler gave great speeches too)...don't shoot me now!

Loretta, thanks for the suggestion of the BP machine. I think I'm going to get one. Some days I have lots of energy, but they seem to be getting farther between the older I get.

Hope I've helped, what are you taking, Sun?

Pete

asb

Hi, I am also on opoids for treatment. 2years with now generalized CRPS. Using oxycontinseroquel. , vicodin if needed, elavil, and seroquel. Also using hot water therapy and relaxation techniques to help.

Sorry add on to above- lyrica, oxycontin, elavil, seroquel and vicodin as needed. Epsom salt baths.

Oh yeah, me too!! It is all about trying to have a quality of life. I have been on high dose opiate therapy for over 8 years. I just look at it as necessary, much as insulin is necessary for diabetics. Lisa

Hey Pete, Good to hear from you. I remember the time of not sleeping at night. Would be awake all night till 5-6 am Was rough. Ambien CR quit working. My Dr. was doing a 200 person trial study of seroquel xr for fibromyalgia. I also have fibro. It was found to work great for sleep for a lot on the trial including me. The trial was 300 mg of seroquel and worked right away for sleeping 10 hrs. The amount was more than I needed, so Dr. reduced my script for 150 mg. Several months later still sleeping all night. Just thought you might want to ask your Doc. I don't have health insurance any longer, but they have a program of first month free and the following months are-not sure maybe $60.
We are still in triple digits here in the desert, but soon to be in the 90's Been a HOT summer. I'm making plans for getting out of dodge at least 4-6 weeks next summer.
Take care of yourself, sounded like a wonderful time you had having crab and seafood. with your friend. My girlfriend that was here with her husband in March for 12 days is coming back with her daughter for a few days. Our daughters grew up together grade 1-12 and our husbands were in business together for 10 years.
Hope you have a good week of lower pain. Your friend, loretta

Hello Loretta!
We spoke quite some time ago about the Seroquel, I'm really afraid of it. (I was given a sample of it, LONG ago). I went to stay with a couple (friends, of whom I met her in the hospital @ Schwartzman). She was on Seroquel to sleep and Provigal to wake up. (Anyone here ever take Provigal?) I hadto take that terrible stuff, after my TBI for a few years and it's the devil's own drug, IMHO. It really cranked up the rsd pain)
But, I simply couldn't stay awake! Now, I'm dx'd with TranSomnia. Can't sleep, can't wake up. Really weird. But it's the brain injury, not so much the rsd. (I have fribro also, but I really think it's just a 'type' of rsd.)
Long story short, this friend was waking around 3-4 every AM, and waking everyone in the house, insisting on doing what she wanted, which was usually dragging all sort of 'toys' out to do things. She had NO IDEA the next day! Every morning she'd wake up in a different part of the house, upstairs, downstairs, living room, occasionally in bed. The seroquel for me, knocked me out for two days, that was a half of a 25 mg.! (The Brain injury).
I'm very happy it's working for you, but for me, I'm just kind of afraid of it!

I'm glad you're having some good times in life, Loretta! You surely deserve to!
Be and Feel Well!
Your Pal, Pete.