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

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.

After being on OxyContin for 11 years, plus OxyIR and now on my 2nd internal morphine pump, all I can say is that I'm thankful I have a great doctor who's willing to look at my damage and try and control the pain as best as possible. While I'm far from pain free, I am able to maintain a better quality of life thanks to these very expensive medications. When I had my first morphine pump battery fail, I really saw how big a difference this pain management protocol was making in my daily life.

Stop being scared of the hard hitting drugs. According to my Mayo's trained doctor only 1 to 3% of those taking these drugs ever become hooked. While there is a certain degree of body dependence, that's not the same. When I have watched those same TV shows you've watched about the horrors of taking these medications I've gone to my doctor asking if I was hurting my life more than helping it. His response, "Stop watching them!"

There are people who abuse the living heck out of medications for all the wrong reasons, but when there's the real physical damage that necessitates the need for these drugs, they save our lives and make it possible so we can still find new ways to live life though with perhaps a different set of limitations. Best of luck and don't let the bad press and overly judgmental people who have no idea about what life is like when you're living with the pain loads we consider normal scare you into making the wrong choice. Last of all, when you're with a doctor with a great reputation and who's well trained, there's nothing to be scared of. For all those in that one county in Florida who are nothing more than addicts taking what's referred to as the OxcyContin Express, I can only say I feel sorry for you. What I'd give to not have to take these drugs, so why in the world would anyone do it on purpose? Meanwhile, those of us who are very injured are blessed that they're out there. Bob.