This was the comment I was referring to when I brought up addiction vs. dependence.

I know LL, but most providers that I have seen in the past 5 years (on both sides of the issue) do not recognize the difference. When a patient asks for pain medication, quite simply, they most often get thrown into the 'addict' side of things and get labeled a 'drug seeker'. Pain is so subjective. There are things most in the medical field confirm cause pain: broken bones, cancer, surgery, childbirth. But even then, if it's an infant "they don't feel pain". If it's soft tissue, it heals too quick to need any prescription. I was lucky with my endo pain. I had doctors who understood. Then again, I also had surgery after surgery after procedure after surgery.
When I fractured my patella, the ortho didn't give me anything. I didn't ask. My second ortho was informed on my initial visit that I would not endure PT without pain management. He obliged. I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain.

Good to hear you fightin' again! Thanks for appreciating my sometimes obnoxious tendency to say what's on my mind. I was not very clear about the block reference. I just meant that I had read about them being done so people with CRPS could tolerate rehab. The point being that the rehab is that important, not that I think you are or should have blocks done. You'll decide that for yourself once you get to PM.

I am sorry it is such a battle with doctors and finding them. So tiresome. I myself am now looking for a new neuro as I want to try low dose naltrexone and mine won't prescribe it since it is a "controlled" substance. Hilarious! not sure what the abuse potential is unless I planned on overdosing on heroin or something.

You keep at 'EM! I will keep rooting for YOU on YOUR side! And taking some hits and bruises here and there too...

Littlepaw

Dependence on opiates is not something to be ashamed of, it a biological reality for many of us.

Have things changed over the years? Absolutely. Too many people were inappropriately prescribed strong opiates that should not have been. Now, there is a backlash, that has tightened the rules.

I refused stronger meds for something like 4 years, so I'm by no means suggesting someone newly diagnosed should consider opiates as an early option. But, if your doctors can't find a combo that gives you some relief, than it might be an option later on. If you're with an experienced RSD/CRPS doctor that you develop a trusting relationship with, they should offer you the right meds, you shouldn't have to ask for them.

Do I care what some random stranger's passing opinion is about the meds I take? Nope.

How many of them have a clue what living with RSD/CRPS is like? My guess is less than 1% of health care providers.

If you truly feel you can't fully participate in rehab with the meds you're being prescribed, than you need to request to change the rehab or change the meds. The rehab that was by far the easiest was in a warm pool, as others have suggested. I underwent a series of stellate ganglion blocks early on that would give me significant relief for 1-3 weeks and would allow me to participate in rehab more fully. Etc.

And I refer you to the McGill Pain Scale:

http://www.rsdhope.org/mcgill-pain-i...in-ranked.html

My RSD/CRPS pain is MUCH worse than the post surgical pain I've had.

"I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain."

THESE ARE THE REAL ISSUES. ^
Worrying about what your family thinks, let alone some random health care provider, is just a distraction.

To not allow you Lidocaine patches is frankly silly. They provide temporary relief and are not going to interfere with tracking your results from the gaba. They certainly won't get you labeled as a drug seeker. --It will take several months at a minimum to adequately test out various meds. That doesn't mean your doc should allow you to hit rock bottom in the meantime! Prescription strength melatonin will deal with the insomnia. Sending you to a pain psych doc so you can learn to breath and meditate will help. Finding a warm water pool for you to rehab in. Those are a few examples of things your doc should be suggesting.

It might be difficult for you to find a more experienced RSD/CRPS with your insurance options, but you might not have a choice.

I can identify 3-4 distinct pain syndromes I experience on a daily basis:
1) Bone/muscle/tendon pain in my knee. This is due to the osteoarthritis/atrophy from the palsy/non-use
2) Burning ice/stabbing/ripping apart ankle pain. I believe this is primarily attributed to the RSD/CRPS related to the nerve damage.
3) Constant tingling with occasional shooting pain in my foot. Could be again from both the nerve damage and the RSD/CRPS
4) Muscle cramping/twitching pain in my calf and foot. I think this is most likely due to the palsy/non-use.
While the gaba helps with #2 & 3, it does little for #1 & 4. And 1 & 4 inhibit my rehab the most at this point. 3 I can deal with for the most part. 2 stops me in my tracks and I have begun to see them as flares because of what I have learned from all of you. Opiates and muscle relaxers would most likely provide the best pain management for 1 & 4 and be the most helpful for my rehab. At the very least, muscle relaxers to take after therapy.

The only thing that makes me care what my health care providers thinks is that they are what will get me pain relief. So long as they don't think of me as a drug seeker. Like my first ortho before I even walked in the door.

I can't change therapy because it's the closest one that accepts my insurance and I haven't even started yet...the initial eval sent my pain through the roof.
I can't change meds because the only one I'm on is the gaba. I suppose adding a med would be a change but I'm not sure that's going to happen.

I'll see if the Y has a warm pool. It's 45 min away, so I'm not sure how often I could get there.

AB:

I applaud you wholeheartedly for getting back in the ring. I can't imagine what it would be like to lose my son. Well, I can imagine - but just the contemplation of it tears at me. All I can say is I believe there is a reason you're here now.

The medical field is not set up to help us. Fact. It's not their fault; they were trained otherwise. There are always flowers in the weeds, but they're an absolute rarity, and even then, a good flower helps you help yourself.

This place has a lot of good flowers.

So, because our own best medical professionals don't understand this condition, lots of us here are desperately seeking ways to take this into our own hands. But we're so twisted up in this awful RSD Gordian Knot that we have no idea where to even start, let alone what to do. And lots of the things we do try make it WORSE and we have no idea why.

I have to defer to many of the fine folks here, as well as PTs/occupational therapists, on the appropriate guidelines for physical rehabilation. With RSD, the line is so very very fine as far as what constitutes actual forward progress and what constitutes adding another layer to the Gordian Knot. On the physical rehab side, all I can say is to get to know your own body and trust your own non-emotive intuition above all. I do love the warm water recommendation. Constant, easy motion of the affected limb(s) is, in my opinion, the best way to proceed here.

Getting back to the core issue though: How do we fight something that is quite apparently NOT understood by medical professionals? Indeed - many traditional therapies and modalities actually make RSD worse.

What I am very well versed in, by necessity, is the mental component of rehabilitation. And there is no standardized training for it. Not yet. There's no PhD in "Consciousness." Neuroscience is trying to circle around it, but they're still trying to look at the tangible, material component of something that is not physical. The brain is the creation, not the creator. But I digress.

And yes - it helps to have working knowledge of the human body to get there, to the point where we can start to untangle the dang Knot, but not a whole lot is required. The one thing RSD experts seem to agree on is that the nervous system is affected. Whether it's the affectOR or the affectEE is another story - but regardless - at least there is common ground for the following:

With RSD, the nervous system is in a self-sustaining fight or flight mode.

Looking a little deeper - it's primarily the autonomic nervous system we're talking about here. http://en.wikipedia.org/wiki/Autonomic_nervous_system

Quoting Wikipedia: "The autonomic nervous system is a control system that acts largely unconsciously."

AND HERE LIES THE BIG PROBLEM. RSD has its most significant impact within a control system that is outside of our normal CONSCIOUS awareness. It acts in our sub-conscious and "un-conscious." So it appears there's this system gone haywire and we're apparently helpless to do anything about it. Until we ask the question:


How do we consciously influence our subconscious?


By using our own mind as a tool.


Here's a post on how I got started: http://neurotalk.psychcentral.com/thread202210.html

It's not mind over matter - it's mind IS matter.

And I'm not saying we can just close our eyes make a wish and POOF - we're healed. I'm not recommending New Age crap about "manifesting all of your desires through the law of attraction" like The Secret. Just an open mind and an honest attempt to truly get to know one's self.

It took a long time for our respective Gordian Knots to get to their current size, and it takes a while for them to unravel.

The good news is - to the best of my knowledge, EVERYONE has a mind, and there's no added risk of further complications and side effects if it doesn't work. And it's something that we can do ourselves - actually taking matters into our own hands.




...Sorry for the diatribe on your thread, AB. I've become very passionate based on my own relative experience and want to share and help. I just hear so much honesty and heartbreak in your posts... along with a willingness to look deeper at yourself and forgive.


Wrong.

From Always Believe "I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain."[/COLOR][/FONT][/QUOTE]



Reading this now I am sorry I skimmed past this post and responded to an earlier one. Aaack! I would've said something. My only is excuse is that yesterday I was focused on prep to go to Houston and getting my son squared away beforehand. Today was hopefully my last injection set to hydrodissect scar tissue in my ankle. So not fun....

It is no wonder you are grumpy, irritable, depressed. I am irritable for you and the delay in referral. Would your PCP maybe be more amenable to a referral for Physical Medicine and Rehabilitation? These guys are used to debilitation and pain. Some of them do a fair amount of pain management. I'm thinking maybe with the functional limitations and PT the PCP might go this route and it would at least be something.

I think more and more the pool would be so good for you. It might be worth a call to the Y to see if anyone in your area goes in on a regular basis. Also some of the churches have volunteers who drive people for appointments and such. There may be some kind soul willing to help out. I know an avid swimmer who lives 45 minutes from a community center with a pool who makes the drive routinely. She is a retired cop and wouldn't hesitate to give someone a ride when she goes.

Lastly, I know I said it before but I'm gonna say it again. Think about Mayo. It's in striking distance, they love changing people's lives and they do 100% write off depending on income level. They have pain, ortho, PM&R, the whole shebang. You could get that whole multidisciplinary thing going. I am sure they have a place people can stay that is underwritten by their foundation. Stanford does, Seton in Austin does, regardless of what hospital you go to in Austin. What have you got to lose? Call and talk to someone at their concierge office or bug a social worker. A hospital social worker will know how to get you set up. If they don't know they will find out. It's what we live for.

I am sending Healing Love and prayers for rest and restoration.
Littlepaw

Again, I appreciate your thoughts put into words. Beautiful to envision what your words look like in pictures.

Thank you for being a flower. I have (or had in my last house, new house is in the works) a blue rose (at least one) in every room. My son was buried in a bed of blue roses...we each laid one with him before they closed the casket.

I wake with a thought of my son every day. I go to bed with another.

Always believe: I wake with a thought of my son every day. I go to bed with another.