I've been noticing it seems more and more, that lots of folks are seeing Pain Control doctors, or centers.
This is kind of distressing to me. I think of them as pill mills. Am I wrong? (too much tv?)

Do these folks actually KNOW rsd? Do they know what tests you might need? Therapy?
//////
Remember the circle of RSD pain management?

Exercise (Use it or lose it) Keep your body limber.
(Yea, I'm great at that. I can walk, with a shock absorbing stick, but I cleaned under my desk the other day, bending, reaching, on my knees, and spent the next day in bed). Hah!

Psych. A psychologist, or better, a psychiatrist that specializes in pain management. You should go through a year or so of treatment to exorcise any psychological pain triggers, and then, go prn. Many of these docs, once they get to know you, may do this over the phone, but, I can't reiterate enough, how important it is.

Your Doctor, and your meds. A doctor who understands RSD thoroughly. And, will treat you correctly. You'll know when you've found the right one!
//////

I went to my own doctor and a chiropractor for years, then the chiro recognized (from another patient) the rsd. He got me in to see Dr S. in Philly within a couple of weeks. (that won't happen now)
My current doctor was Dr S's partner @ Jefferson, who started an RSD institute when Jefferson decided to build a HA center, rather than RSD.
He is, of course a Neurologist PhD. (psych). Dr Robert Knobler.
I'm very pleased. (He's in Fort Washington, close to Philly).

I sort of cringe when I see anyone write or say they're going to their PM doc. IF, they're just giving you a script for a medication, without delving deep into your personal symptoms, something is wrong. JMHO, of course.

What do Ya'll think?

Pete

asb

I have been to couple pain doctors and not one has wanted to rx narcotic or similar and these were at places like Cleveland Clinic.
The 2 neurologists I saw did major dx testing and very little with meds or treatment.
Glad you are pleased with your doctors. I agree that is very important to see a doctor who deals with RSD

My neurologist says no pills. Now what he means is, Change you life around, lower your stress level, manage your life so you can live within boundaries where you are using pills as the only answer.

He wants me to live the fullest life I can without being depending on the meds. You are right Pete, a pill will not cure bad behavior, or allow us to do more than we should without consequences.

Knowing my own body, my limitations, my responsibilities to maintain proper diet, sleep and exercise, rest and meditation are my best tools in my medicine chest along with a doc who knows RSD/CRPS and is willing to work with you as an individual.

But I need to know myself the consequences of the choices I make and decide if I am willing to suffer the cost. I think you need to get one of those extended reacher contraptions Pete, and stay out from under the desk.

I walked for an hour in a fabric store instead of riding the cart, not a good decision. Accepting my limitations has been hard for me, but I am getting there.

Blessed Easter to all
Pat e

Yo my own detriment, I may have lost almost a year of getting diagnosed and properly treated due to my own misconceptions about pain clinics or pain management Dr's.

Most are neurologists or anesthesiologists and while some may be willing to write prescription for narcotics or opiods to help you get through a bad flare up, the majority will recommend anything but. As for familiarity with RSD, they seem much more aware of it then the numerous neurologists I saw before finding the one who helped diagnose me at the Hospital for Special Surgery in NY.

One of the current doctors I am seeing for cervical blocks, lumbar blocks and possibly ketamine soon is part of a "Pain Management Center" and while he has told me he has no issue writing those prescriptions for me if I need them, my main goal is to stay off them and he certainly doesn't push them.

He's also very big on prescribing physical therapy and psychotherapy to help people through this. His degree is in Neurology but he spent an additional few years training in pain management with a focus on RSD.

Please don't fall into the trap I did and stay away from the doctors who could actually help you the most. Research them ahead of time and ask the right questions when you meet, most importantly, find out just how familiar and experienced they truly are with RSD and how many patients they have with it.



Red

Hi,

I'm kinda confused when we talk about pills here. Are we talking about everything? Including Lyrica, Cymbalta, etc.? or are we talking about the pills qualified as narcotics?

Being new to this site I'm sometimes wondering what others are concentrating on. For me, I have not used anything but Lyrica, Cymbalta, Trazadone for my RSD pain. I tried for the past month to discontinue Lyrica and found little success. I'm at a dose of 450 mg/day of Lyrica. I got down to 250 mg/day after a month and found every bone in my body ached, my RSD reared it's ugly head, and it took me a week to get back on balance.

To keep my life in balance and only do what is good for me seems impossible. My feet/legs which carry me every inch of the way scream at me if I am up on my feet for more than 15 minutes. Stress makes it even worse not to mention the cold. Meditation is one of the best ways I have to bring the pain down.

You are so right Pat E when you talk about making decisions. That's the most difficult even after almost 6 years of managing this pain. Hopefully I'll make good decisions tomorrow. 5 hours of car travel for 3 hours of visiting. This is going to be difficult.

Happy Easter to all,

Teresa Marie

From my brief experience (only been dealing with this for a few months now) I have learned that PM Dr.'s DO NOT deal with narcotics and refuse to be used as a pharmacy for those. They will use other med's such as Cymbalta, Neurontin, Lyrica, topamax and things on that level, but not narcos. They are more into nerve blocks, PT, bio feedback and teaching us how to deal with pain instead of letting us get "high" from pills to avoid it for a minute. My PM is an anestheseologist and Psychologist so she has a lot of ground covered, but trust me, she is no softy. It really can't hurt to go and try one and if it is not for you, then at least you know what it is all about. Some people have to go to 2 or 3 before they find one that works for them.

sorry I do not have any more to offer, but thought I would share what I do have! good luck!

Just as in any profession, there is a huge variation of CRPS knowledge among doctors.

And YOUR treatment is only as good as THEIR experience.

I used my pain doctor (an anesthesiologist) for about a year while the pain was the greatest and while I was trying to figure this darn thing out. Now that I have gotten off narcotics (urged to do so by the pain doctor and my others), I don't use my pain doctor presently. But would go back to him in a New York minute if the pain gets out of control again. If one can handle CRPS without narcotics, all the better. But if you truly need them, you should take them.

And while one may get a great pain management doctor, the next person may not. It is trial and error. I tried 3 physical therapists. The first one I hated, the second one was just okay, and I struck gold on the third one. Great relationship with him, he understands CRPS up and down, and we get along famously.

I have CRPS in my foot. My podiatrist is my primary for CRPS, followed by my pain management doctor, then my GP for sleep issues, etc.

And you know the cool thing about these three guys? They actually talk to each other!!! Imagine it. They actually get on the phone and talk to each other about my specific condition! Wow, huh???

I had to urge the PM doctor to get into this round robin, but the value of communication between them has been significant and I have reaped the benefits of it.

You must get multiple opinions on the best meds and treatments to manage your CRPS. In most cases, it will be a multi-disciplinary approach that will give the most benefits. Meds, therapy, mental health if necessary. Seeing just one doctor for this is not a good strategy.

Don't just accept the opinions and recommendations of the first doctor or two that you see. CRPS is widely misunderstood, even among professionals. Our mission is to find the right "mix" of professionals that have the knowledge base and compassion to treat us properly.

First let me say, Im having a bad bad day. Im sick of calling Neurologist office to talk until im blue in the face to their assistants and receptionists trying to get help for this body im trapped!
The only relief i get i from the narcotics. I am not a big fan of having to take them...my life would be utter hell from sun up to sun down without them. I am very happy for everyone who can make it on all the other meds...for me they do absolutely nothing.

I have internal RSD so there isnt any physical therapy to help me, I cant do the ketamine infusions...and there are fewer and fewer pain clinics dispensing narcotics ..its been a struggle to get meds.
sorry i said i was having a bad day. There is nothing wrong with taking pain meds.

i hope you all find the best relief to give you some quality of life
Lori

I live in fl. One of the worst pill mill states there is. There is a big difference in the kind of pain clinics and drs. there are. The Dr. I go to is certified by the state. He does infussions, blocks and all the rest required by his degrees. There are other just plain drs. who do run pill mills, and sometimes do it for money. That makes it hard on the legitimate pain doctors, and gives them a bad rep. I would always go to someone that my PCP referred me to. That is how I found my current pain specialist. A real specialist addresses all the concerns there is, before putting you on strong narcotics. ginnie

Thanks ginnie, and to all!

It was a television show I watched that brought this to mind, and exactly what ginnie is saying about FLA. There is a phenomenon going on called the 'Oxycontin Express'. Where folks (especially from GA. KY.TN.) take the train to FLA, and just walk into a 'Pain Management' facility, and walk out with either a prescription OR a Filled prescription, of narcotics. Then usually they get back on the train, and often sell the pills.
You can still see this show on hulu.com

And, we hear about the FDA, taking the fight to the dr's. and to be a serious pain fighter, narcotics are one of the tools. Doctor fear, and public attitude can add up to a negative attitude toward many of the meds that lots of us take. I don't think a show like that helps.

Pete

asb