Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-09-2010, 05:23 PM #11
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Originally Posted by firegirl View Post
The hospital that I get treated at will not let pain mgmt. docs write scripts for pain meds more than a few months. They send you back to your primary doc for long term scripts. My primary doc is super supportive & has no problem prescribing my pain meds. Although, he wishes that the pain mgmt. department would write them because he thinks they probably know more about which meds/dosages would be best for me.
My opinion is the PCP should wright the scripts, orders from Pain Management. This would save time and money for many people. My wife never sees her PCP because she's worthless, doesn't understand RSD. If she was a good PCP for my wife she would learn about RSD but many don't but should. How can someone even be called primary care doc if they aren't? Insurance company mumbo jumbo really.
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Old 10-15-2010, 08:46 PM #12
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Originally Posted by vannafeelbettr View Post
Hi all! I suffer from Thoracic Outlet Syndrome, Lumbar RSD, Left Lower Extremity Radiculopathy, and both cervical and lumbar stenosis (several herniated discs). Had this problem 3 years now from a car accident. I have both a cervical and lumbar Spinal Cord Neurostimulators that work wonders for me and I'm very pleased with them. My problem lies in when my RSD flares up and the stimulators do not work with the burning sensation on the skin's surface. I need pain meds to take care of that.

So, the bigger problem.... getting the pain meds. My Pain Management Doc (who performed the stim procedures) told me to get them prescribed by my Primary Doctor (as he does not want to be bothered with appointments for minor stuff). I'd been getting them prescribed by my Primary Doc, who then told me she does not want to prescribe them for me anymore because it is a Pain Management Doctor who should do so (I agree with her). Then I go back to my Pain Management Doctor, who wants to perform more blocks and ketamine treatments instead of giving me meds -- don't get me wrong, I love the blocks and ketamine...just don't last and I cannot afford them. PM Doc tells me the pain meds are not good in the long run and refusues to prescribe, continues to push procedures (more $ in his pocket, I know). I'd hate to leave my PM doctor, he does wonders for me when I need my stimulator programs adjusted, and is a genius when it comes to RSD. I know if I switched to another PM, records would have to be sent and if my current PM doctor knew he'd be MAD (he's got quite a temper). Been 4 months now with no pain meds and am going through a torturous flare with RSD

Anyone else have similar experience? If so, how did you handle it??

Gentle hugs Vanna
i know its late but what saved me was being a veteran,no more private docs, for me seems they could care less
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Old 10-15-2010, 10:43 PM #13
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Default Oh Vanna

I am so sorry you are in this predicament! This angers me very much!
I can not believe this!!
You have a VERY serious condition, of which you have vested in getting TWO SCS's - and this Dr won't even lift his pinky to write out a script for your BT pain, yet his pockets have been VERY generously lined with $$. Yes he may be very skilled, but this goes beyond arrogance.......this crosses over in to laziness, GREEED and NEGLECT.
This makes me absolutely SICK.
I don't know what to say.
I'm just so sorry.

My Dr who did my implant sounds VERY similar to yours, and yes I guess I can understand that he's very busy doing his high-end procedures - but he should at least have a specialist of some sort to take care of this so-called 'little' stuff...which in reality isn't 'little' whatsoever - this is our quality of LIFE we are talking about. You aren't getting any follow-thru healthcare on procedures that target very serious pain conditions. Unbelievable.

Something just isn't right with this picture.
You should NOT have to be in this situation.
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Old 10-16-2010, 06:47 PM #14
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I am a patient at the pain clinic of the hospital my PCP is affiliated with. The way they explained it to me at the pain clinic was that those docs do not write for pain meds because there were too many problems with patients calling in after hours for pain meds, bugging the on call anesthesiologists who were doing surgeries, etc.

I'm now playing the WC waiting game waiting for insurance approval to be seen at a different pain clinic that will write recommendations to my PCP who will then write the scripts for narcotics.

My neurologist has been writing for my Vicodin, but my regular health insurance that pays for my meds has dropped him, so currently I am private paying but I can't afford to keep paying $105 a month just for that med.
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Old 10-16-2010, 10:57 PM #15
Lisa in Ohio Lisa in Ohio is offline
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Finz, I am really surprised that your WC claim is not covering your meds. Maybe this is something that you should check into. Lisa
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Old 10-17-2010, 08:01 AM #16
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Default Just calling this the way I see it

You're not the first person to have a pain management doctor who gets locked into one or two major types of treatment that just happen to make him a truckload of money, meanwhile writing out monthly scripts for narcotics is not near as profitable, hence I'm sorry to admit that I think this doctor has his values driven more by his profit margin instead of your care and needs.

Real pain doctors look at the damage and then decide what's right for "you." With the type of injuries you're battling and the pain that goes with them, you do need a multiple discipline approach which will probably include medications. As much as I believe in the power with staying with one doctor, I think that if you were to look for another doctor and explain yourself out the way you've told us here, other pain doctors would understand why you're unhappy, therefore not holding your need to change to a new doctor against you. Your well grounded attitude will show the doctor how and why this problem is occurring. This will lead to better pain management. The problem isn't you, it's just your doctor if you ask me. By the way my heart really goes out for you. Bob.

Quote:
Originally Posted by vannafeelbettr View Post
Hi all! I suffer from Thoracic Outlet Syndrome, Lumbar RSD, Left Lower Extremity Radiculopathy, and both cervical and lumbar stenosis (several herniated discs). Had this problem 3 years now from a car accident. I have both a cervical and lumbar Spinal Cord Neurostimulators that work wonders for me and I'm very pleased with them. My problem lies in when my RSD flares up and the stimulators do not work with the burning sensation on the skin's surface. I need pain meds to take care of that.

So, the bigger problem.... getting the pain meds. My Pain Management Doc (who performed the stim procedures) told me to get them prescribed by my Primary Doctor (as he does not want to be bothered with appointments for minor stuff). I'd been getting them prescribed by my Primary Doc, who then told me she does not want to prescribe them for me anymore because it is a Pain Management Doctor who should do so (I agree with her). Then I go back to my Pain Management Doctor, who wants to perform more blocks and ketamine treatments instead of giving me meds -- don't get me wrong, I love the blocks and ketamine...just don't last and I cannot afford them. PM Doc tells me the pain meds are not good in the long run and refusues to prescribe, continues to push procedures (more $ in his pocket, I know). I'd hate to leave my PM doctor, he does wonders for me when I need my stimulator programs adjusted, and is a genius when it comes to RSD. I know if I switched to another PM, records would have to be sent and if my current PM doctor knew he'd be MAD (he's got quite a temper). Been 4 months now with no pain meds and am going through a torturous flare with RSD

Anyone else have similar experience? If so, how did you handle it??

Gentle hugs Vanna
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Old 10-17-2010, 08:12 AM #17
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Finz, I totally agree with Lisa, I was a wc case and they payed for everything, and I mean everything, They even heated my pool,solar with gas back up. When ever I had a problem with them I would call my lawyer and he would file for an emergency medical hearing. I definitely think this is an emergency if you have been withou meds for so long.
If you have a lawyer, Please contact him and let him/her know what is going on, they will get it taken care of. Hope you feel better.
Your friend Wendy
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Old 10-17-2010, 01:42 PM #18
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Originally Posted by Lisa in Ohio View Post
Finz, I am really surprised that your WC claim is not covering your meds. Maybe this is something that you should check into. Lisa
Ugh ! I DO NOT want to open that can of worms. Yes, they should be......and should have been all along. When I started this game, no lawyers were involved and a different primary was writing for my meds, so I just had scripts through my regular insurance and never thought about it. I don't want them to know figure it out and slam me with 6 years of med costs !

Plus, WC would probably do the WC thing and deny coverage or make me wait forever for things.....and my WC lawyer acts annoyed whenever I call him........

So.....yes, you are right but I will do almost anything to not have to deal with WC
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Old 10-17-2010, 02:26 PM #19
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Quote:
Originally Posted by bobinjeffmo View Post
You're not the first person to have a pain management doctor who gets locked into one or two major types of treatment that just happen to make him a truckload of money, meanwhile writing out monthly scripts for narcotics is not near as profitable, hence I'm sorry to admit that I think this doctor has his values driven more by his profit margin instead of your care and needs.

Real pain doctors look at the damage and then decide what's right for "you." With the type of injuries you're battling and the pain that goes with them, you do need a multiple discipline approach which will probably include medications. As much as I believe in the power with staying with one doctor, I think that if you were to look for another doctor and explain yourself out the way you've told us here, other pain doctors would understand why you're unhappy, therefore not holding your need to change to a new doctor against you. Your well grounded attitude will show the doctor how and why this problem is occurring. This will lead to better pain management. The problem isn't you, it's just your doctor if you ask me. By the way my heart really goes out for you. Bob.
I agree!
And regarding his office being 'bothered' with too many people requesting pain meds.....well, there's NO EXCUSE for neglect! If he's willing to do these high dollar procedures, he needs to be responsible for the ENTIRE package that goes with this. These doctors know dang good and well that the SCS usually still needs supplemental pain relief options.....
This is what DELEGATION is for!! He certainly can afford to staff a licensed individual to take care of these follow thru health needs. It wouldn't be that big of a deal to have someone taking calls and filtering the pain med requests to someone who can be on top of this.

There's only ONE other thing that peeves me more than what this thread is talking about and that is PHARMACY SKIMMERS!!!

I've seen up close and first hand the reality of what this type of corruption is doing to innocent people trying SO HARD to do whatever it takes to have their legitimate pain needs taken care of and yet for one reason or other, so many are not able to get the pain relief they need and deserve and end up hopelessly looking at ending their lives as the only way out.
I'm sorry to be so dramatic, but it's a reality that I can not comprehend.
There's NO excuse for pain patients to suffer, when there is PLENTY of REAL pain relief available.
Why not just let the street junkies be left to their own fate - the 'war on drugs' has gone wayyy over the top.
Can't we just shove them all in one of those multi-BILLION dollar space probes we are spending tax money on and send them out into space......
yeah.
Cuz obviously that money isn't going to go to the cause of trying to PROBE for cures of these conditions that plague us.
Ok, done with the Andy Rooney Rant
I'll shut up now.
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Old 10-17-2010, 07:11 PM #20
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I am lucky with my PCP, she prescribes my pain meds. I have been dealing with rsd for almost 20 years and have seen a lot of doctors, specialist and tried many treatments. Early on most of the doctirs treated me like it was all in my head and wouldn't prescribe pain meds. My ortho would only prescribe a minimal amount of meds and would not refill narcotics. They were only given for after surgical procedures and then I was lucky to get 30. My current PCP is wonderful she referred me to PM who I saw and didn't like. All he wanted to do was put me on Lyrica which I didn't want to try because I had a bad reaction to Neurontin. He basically told me to come back when I decided to try Lyrica, I haven't been back. I have rsd in my lower extremities, hips and spine. It also effects my right arm and hand somewhat, I have color change and temp change in my hand and occassional burning in my hand but it is tolarable where the pain in my legs, hips, feet and spine is not. The PM also said he would do epidural injections if I wanted them, I am on coumadin for dvt and chronic veinous inefficiency and coming off coumadin and going back on is not a simple thing for me and would involve a hospital stay of a least a week so I have been hesitant to try the epidurals. I am stable on my current regimen of coumadin and don't want to mess that up going on and off or increase the risk of new clots by going off. I will be on coumadin for the rest of, my life because I have Factor V Leiden a blood disorder that makes you more suceptible to getting blood clots. My PCP prescribes everything for me and I am currently on Norco 7.5mg though have new script to increase to 10mg because pain levels are increasing. I'm also on Robaxin and Celebrex. I wenr many years without proper pain meds and I'm thankful my PCP is willing to pescribe enough pain meds for me and actually gives me enough for a month and not just 30 at a time. Talk to your PCP he/she should be the head of your team.
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