Medications : If not narcotics-what?
 

My rsd is out of control. Now each time it has spread my Dr. increases narcotic or goes to the next strongest narcotic. I fear dependence, but he assures me that it is important right now to get RSD under control. Each of the meds I am on i have been on higher doses but too many side effects.
Lyrica 250mg(300 too out of it),cymbalta 30mg(higher too many side effects), lidoderm patch at night, just started Methadone. Have read methadone is good for RSD/chronic pain. Have tried darvocet, vicodin, valium, kadian, oxycontin and spreading and pain continues. I don't want to add more meds. Each of these supposedly does a different function to help control RSD so I take them.
If you are not on narcotics what are you on? Are you still in pain?
Could everyone list the medications you are taking right now?
Thanks for helping. momof4

Hi Mom,

I use Fentanyl (.75 mcg) and Hydrocodone IR for pain. I need opiods to control my head pain, which is totally and completely disabling. I used to take Methadone also, but Dr. Getson pointed out that Methadone and Fentanyl DON"T go together. In addition to those meds, I take Topamax (200 mg), Cymbalta (60 mg), Skelaxin (800 mg at night), Clonodine (for HBP due to pain), and Ambien CR 12.5 mg. I also use a number of Lidoderm and Flector patches, and Voltaren gel. The gel is the equivalent of the Flector patches and I can put it in my hair on the back of my head when I get really bad headaches.

XOXOX Sandy

Hi RN Mom, I've had RSD 15 years, fibromyalgia and Trigeminal Nerve Pain. I take 4 vicodin, 4 Lorazepam , 120mg Cymbalta, 300mg seroquel xr 300-for sleep- used to take ambien cr, but stopped working and I couldn't sleep till about 5,6 a.m. My dr. put me in a 200 person study. It helps with fibromyalgia and sleep 10 hrs. I'm also on 2 high blood pressure meds-diovan 160 mg. and metoprolol succ er 50 mg.
I used to take 3200 mg of neurotin for electric jolts -full body and spasms, then tried lyrica 400 mg. they both worked in stoping the dystonia. But hated the weight gain and brain fuzziness. I gradually went off and didn't get the symptoms back. Been off 2 years now. Also was on two anti-depressants, paxil and wellbutrix, double dosed, but went off andjust on cymbalta. I current rsd dr. for the past 6 years is really like. He is a neurologist,, psychiatrist, and pharmacologist. Then I went off ambien and on the seroquel, besides sleeping so well, I was able to go down in vicodin and lorazepam by 2 pills each per night.Used to be on 6 each.
He just built two clinics and I plan on trying his hyperbaraic oxygen treatment chambers. He has had excellent results on other patients. We are in Scottsdale,AZ.
I have had a lot of physical therapy and massage therapy. I'm mobile with the exception of a partial use of left hand. Delayed diagnosis and therapy. I
m very cautions with my diet-high antioxidant foods. fresh fruits and veggies. Mostly vegetarian with exception of salmon and scallops.
Cymbalta works well for nerve pain. My Dr. would rather me be on a variety of meds that work on nerve pain and lower doses of narcotics. Also the Lorazepam-anti-anxiety med- lowers anxiety, thus lowering pain.
I'm sorry you are having a rough time. How old are your children? We have 1 daughter-married and wonderful son in law. She was 15 when I got RSD. But I went into remission twice for a year, Wasn't diagnosed for 5 years-about 3 months plus months after her wedding. We still miss many of the things we used to do together. But her husband is athletic and loving to do the same things and travel too. My husband has been so good to me-not at the beginning. He along with others didn't know what was going on, including myself. They both went to Dr. with me, and did a lot of research themselves.
I think that is so important for marriage mates, and older children. It's tough when they think you should be doing more, and you can barely get out of bed.
I attended the RSDSA annual meeting here in Scottsdale this past spring.
I know Medthodone was talked about in a good light for RSD. My Dr. however, doesn't want to see me go above Vicodin. And Vicodin 2 at a time, works well for me. I can drive after 4 hours and before taking my late afternoon meds. So I'm happy I can be partially mobile-driving. I take it seriously, not driving after taking meds.
Please let us know how you are, and what Dr. says. Your friend, loretta with soft hugs:grouphug:

Dear Momz..

I am unable ot take anything for my RSD... The list is as long a 2 arms.. which I brought back up for a second time... I had TOS requiring bilaterial first rib removal 20 yrs. ago.. at the time , sorry for this but, tossing my cookies with chest incisions.. I actually did the second rib removal with only Tylenol.. I learned then.. That I go totally cold turkey..so not worth the price I pay on top of suffering from my RSD....

KS:hug:

Hi RN
Im sorry to hear about your pain, RSD is an horrible disease, Its is and is not well understood..Its a oxymoron,,what works for one person,does not for another,But there are ballpark meds,that seem to be universal..Try to find a groove with the meds,,but I do agree with most,,less is better or none ,if we could tolerate it,,But that is easier said than done,I dont think anyone really wants to be a slave to a rx bottle,,I hate it,I want to be free. .It is a miserably disease,,,Exercise and staying mobile is a must and is benifital,,but go a little at a time,easy does it,but it will cause flares at first,but your body will adjust , it takes time,and exercise will aggravate RSD after your done,,but it does push the beast back into its cage in the long term of it all, but we must keep moveing,,,,Prayer is very powerfull, and the wait is often grueling,,but there is hope my friends,,there is hope,,,,,,,,,bobber P.S, Hats off to Keepsmiln,,you must be one strong individual and an inspiration when it comes to role models..I wish that i had half of that strength

Long ago, and far away,
Dr S, sent me to his pain management psychiatrist. She put me on methadone, with Dr. S's approval, and recommendation.
I cannot quote, but it was like this:
You've been taking weaker meds that "mess up your head" ((MY complaint)), now you can take an "Appropriate drug", and feel better, and work better.
Methadone returned my life for about 15 years, when, I was in another devastating accident that should have killed me!
(I've now lost most everything I owned, I was "well off", but, that didn't make me alive!)
Now, I can concentrate on "being better" and living a less angry life. In fact, I'm starting to enjoy it again!
As if God meant this for me!

Don't be afraid of the stronger meds, be afraid of "too much" of the weaker meds!
They'll mess you up!

I agree with your doctor, what you wrote, 100%!
I think that you should give it a chance, too!

pete

Dear Bobber....

You do have .. more than half of the strength, you have more than you realize..we all do, cuz RSD is not made for the weak.. my friend...I very much appreciate your kind words...thank you... I come from a small town where they breed them either tough or crazy...I believe I am the later!!! tee-hee.... prayers are a must.... Hugs my friend!

topical cream with meds in it was mentioned in our thoracic outlet forum -
http://neurotalk.psychcentral.com/thread111767.html

I wonder if something like it would work for RSD also...