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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: Savella
Apr 26, 2013
[QUOTE="shequest;5164928"]I haven't heard of Savella, but I live in BC, Canada.

I have used the Fentinayl patch, but didn't notice and help in the pain direction.
I am trying to find a pain clinic that may be close to where I live and that doesn't take 6 mths to get an appointment.
The Dr. I have now, was all gung ho at first, he was going to make me pain free, guaranteed... I didn't believe him, but it was nice to think about... So he put me on Suboxone, it wears off to soon, and I am having alot of break through pain, he says just go and lay on the couch????? Right, that's going to keep me mobile...
And he adamantly, refuses to give me a script for anything at... he tells me now I can have nothing, but the Gaba, elavil, minipress, and the suboxone.
So I need to find someone who really understands RSD pain... Because the would be believers are not anymore... have any of you people on here noticed this?[/QUOTE]

I am so sorry you are going through this. It sounds like your doctor is passionate but maybe at the end if his toolkit or has too many patients... or any other number of bs reasons, but whatever the cause, you are NOT being treated adequately.

There is so much involved in RSD/CRPS. It is manifests differently in everyone and since the pain experience itself takes place in our brain, our condition is affected by our ability to handle stress, the strength of the pain signal/a versus our conscience or subconscious ability to thwart it /them, co existing conditions, how we feel about ourselves and how this affects us and any loses it may have bestowed upon us, etc. in short , CRPS is a B**** and the fact that you don't have a doctor who is treating you holistically is making your situation worse.
The good news? Since you are by being treated as adequately as possible now, you are not as well as you will be = light at the end of the tunnel...

Also (I think I missed something about this in your original post but I am using an app and have not figured out how to reference OP while typing), how have you been experiencing CRPS symptoms? Do you know at what stage your symptoms are currently? Do you know if your pain is sympathetically maintained? These are things that can help guide doctors in treatment. I also ask because you speak if your existing doctor working to make you "pain free". Unfortunately, true CRPS/RSD is a chronic pain condition and a disease. While I have heard of people having very reduced and manageable symptoms, I have never heard of anyone actually becoming pain free. I believe it is important to demand a high quality of life from yourself and I believe you can become much more comfortable than you are now, but I am not sure pain free is a realistic expectation am therefore not really healthy or helpful?? I am not judging at all here and I am not a doctor, but I have had this for a very long time and have done a lot of research/worked with many doctors, and while I am incredibly happy and love my life, I am in serious pain every minute of every day.
One thing I have realized for certain about this disease is that we simply have To bethe captain of our own medical team- even though we are exhausted and not specialists! However, I commend you in seeking a doctor who is open to seeking out treatments that improve your quality of life. I have tried many treatments and have find that sometimes one works and someone's it doesn't and then I have to hit the drawing board again. Have you read the book /worked the program called 'Managing Pain Before it Manages You', by Margaret A. Caudill, MD, PhD, MPH? I found that super helpful. I also regularly vent to a therapist (even though I went through several before I found one I liked) because I am often angry at people who don't get it or rude folks at the grocery store who ask about my crutches directly (not even referring to kids here), and because I don't want my husband as friends (or myself, haha) to be 100% responsible for my sanity- but that's so that the anger doesn't come into my real life and destroy my friendship, marriage, or Kroger card. A preventative measure, if you will ;)
I also found a doctor who runs her own private practice and believes in treating the whole patient. She was a surgeon at a too hospital for almost two decades but she believes in providing a very one on one, comprehensive experience. She believes her patients and she believes in them. She is expensive as hell but after a couple grand out of pocket, I no longer wanted to be dead- and a year on that treatment later and I have my life back.
Search for private practices specific to women if you are a woman ad men if you are a man. Look for the kind of place that also has some alternate by proven treatments like acupuncture and massage therapy- not because I am saying you should do them (although they work for some CRPS patients)- but because these are the kind of places that have doctors who believe in actual anesthetics and pharmaceuticals as needed, by also in making sure you are heard and that they had treatments that work for you. Expect to talk to some quacks on paid phone appointments (to save your body) while you still then like t's a job interview. Be polite but express your condition, needs and concerns and then ask them how they assess a patient and what sort of treatments you might have available to you, and what experience they have with pain patients. I believe in a doctor who says they want me to have a better quality if life and be more comfortable. They are willing to prescribe what I need in order for that to be done as log as the benefits outweigh the risks, but they do NOT say they can cure me or make the pain go away.
Gosh I rambled. I hope this helps in some way. I know everyone is different and there absolutely is a chance your pain can go away but I do not have the information or expertise to assess such a thing.
If you want to talk more or if you have any other concerns you just want to vent about, I am always glad to listen.
I hope you feel better soon!





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