Spike,

I noticed when I was first lurking here that there were people who listed lots of drugs, but who were still in pain asking posters about other treatments. I wondered about the ineffectual polypharmacy. Maybe this jumped out at me, because I was treated like an addict and not given much. I mean really, one doctor said he might give me topical lidocaine-" maybe in a few weeks."

Deepak Chopra made a statement that two drugs used in the right combo equal four. Unfortunately, not all PM doctors understand CRPS the way he does.

I don't want to hijack this thread and get off topic, but I think we all need to be aware that polypharmacy may cause us other problems.

Nah, you aren't hijacking anything. Our disease is a very serious one, and so are the medications that doctors prescribe to us to take to help with our pain. Even super star athletes have gotten addicted to pain killers over the years. When I first was diagnosed with CRPS, I told my doctor that I did not want to take anything that would make me addicted to them. She did an excellent job of educating me on the difference between being dependent on a drug and being addicted to it. I learned a lot from her. The patients in the area of the country where I live, lost a great doctor, when she stepped away from her practice, because the paper work for SSI, Disability Insurance, and Medicare started to pill up in recent years. Not all doctors are great ones.

This is an interesting thread. I've found myself in the situation Russell explained, that if I stay right on track with my treatment plan I feel good enough I think I can deviate from it.
My mother in law who very strictly only uses homeopathic remedies and herbs has also had a huge influence on me. I grew up with a mother who developed a neurological disease. Her neck stayed completely distorted. Her chin laid on her left shoulder and her neck on her right. I was very judgemental of the handful of pills she would take daily to survive the pain. Although looking back I admire her because she remained a high school English teacher for over twenty years like that while students made terrible fun of her appearance. So when I began having symptoms of RSD years ago I refused all sorts of treatments. I decided to go the holistic and homeopathic route under my MIL's and Chiropractor's guidance. I did this for a very long time. Unfortunately I received little to no relief. I was so frustrated that I began going to Doctors. They would take one look at my red, discolored, swollen, wrist, then arm, then other arm, then left foot, then right foot (over time of course) they never had a diagnosis, but would just throw prescriptions at me. It was terribly frustrating because I thought it was borderline unethical (perhaps too strong of a word), but for instance because I would sit in my doctor's office at the Mayo clinic with outrageously high blood pressure from pain and pain so bad that would actually make me bleed rectally (yes I know, Too much information but later I found out that absolutely can occur with RSD) he would only treat me with Dilaudid 3x daily. I was so naive to that particular drug I tried it for two weeks and I felt like a zombie, yes I stopped the bleeding and my pain and blood pressure dropped significantly, but I could not function I was so constantly drugged. I should mention that I was prescribed other drugs while there for over 9 months, Tons, literally as in I know over 30 different medications (no I did not take even a third of the prescribed medicines), but I'd like to note that none of them were "pain" relievers except Dilaudid, but after researching Dilaudid, I thought it was insane that they STARTED out with such a strong "pain reliever." Then I just refused all of their treatments and they washed their hands of me. Because this was just the beginning of my RSD journey and I felt 8 Doctors at Mayo should have been able to give me a diagnosis, I just quit going to Doctors for a year and a half. That didn't work out so well for me either. I spent months in bed in horrible pain. Finally I decided to start back trying to get a diagnosis. I don't believe I could even count the Doctors I saw. Finally I was given a diagnosis of RSD and I began doing so much research on it that I became extremely methodical (as Little Paw said) about the way I would take my medicines to note their effectiveness and their side effects. It has been an extremely daunting process. Just when I was thinking something was working it would stop. For the time being I have hit on a combination of medicines that are working, but I realize that could change at any given moment, and like you mentioned Spike, my current Dr. has done an excellent job at teaching the difference between addiction and dependence. As a side note I was having cognitive issues for a year and a half without taking any medications, but as mentioned above severe pain and not sleeping properly can take a huge toll on our cognitive state. I certainly have big time, HUGE, troubles in that area, and my Dr. blames it all on RSD, but it is a valid question raised, could it be from the medicines and the many other factors also? Personally I've stopped all medicines more than once because I didn't think the trade off of such cognitive problems was worth it, then after a short period of time I'm convinced again that I will take these prescriptions because ANY amount of pain relief is worth the side effects. I've found it a very hard place to be.

My doctor took my blood pressure several times last week during a physical, because it is so low, but he was just fine with my heart rate, which is "normal." Well, it isn't, not for me, I have never been able to get my heart rate up, even when I exercised, but on this day I was in terrible pain and my heart rate clearly indicated it.

I don't understand why doctors do not use a computer algorithm to help them better diagnose patients. In my case a computer program would analyze my history, red flagging the elevated heart rate, which would support my pain complaint.

Sometimes I wonder if the medical profession contributes to our stress, because they don't avail themselves of the right tools to help us. I hate it when my husband tells me to call the doctor, because I know it is going to be a waste of my energy.

I agree Biobased. Meds have a HUGE impact on mental (and other) functions. When I was first diagnosed with CRPS over 10 years ago I felt like a guinea pig with all the meds I was on. Lyrica was one of the worst, making me feel "dumb and slow", when my husband pointed out that I was definitely not as intellectually there as usual, couldn't drive, could barely get off the couch, and had gained 30 pounds (husband didn't point the last 3 out), I really reconsidered all the meds.

You have to weigh the costs verses the benefits of all meds. I stopped Lyrica, and yes have some certain types of pain because of it, but it was one of the best medicine decisions I've ever made.

This may be difficult for some to understand, but you have to live with being in some pain if you live with having CRPS. If you are ever complexly pain free for anything more than short periods (unless you've received a special treatment), you are most likely taking too many meds (or you are very lucky!). I would rather live with some pain (sometimes a lot) and still be able to be "mentally with it" and just try and function the best I can. Some days, taking a shower is a victory. Other days I'm doing much better. On really bad days I may make a list that literally only says "take a shower", so after I complete the task, I can cross it off my list and feel as if I've accomplished something that day.

Megsmountain,

I haven't had a pain free day in over a year, even though I am more mobile I struggle with a certain amount of pain, weakness and fatigue. My weight has gone up just from being inactive, it would be horrible if I gained even more weight from medications.

The NSAIDs the doctors insisted I take, not that I took that many or in massive amounts, damaged my stomach, so now I have that distress to deal with.

I know what you mean about taking a shower being a victory-I praise myself for making my bed, crawling in the tub for an Epsom salt soak or getting a load of wash going. After yoga class, basically the only time I have been leaving my house lately, I am too tired to take my clothes off, I pass out and sleep until the next day.