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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)

New CRPS severe!! Pain

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Unread 11-28-2012, 06:45 PM   #1
CRPSsongbird
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Attention New CRPS severe!! Pain

Complex Regional Pain Syndrome. And that is what I've been diagnosed with. Also it was most likely from the tourniquet as well as the venipuncture....i will try there but my pain is SOOOO OUT OF CONTROL RIGHT NOW! I am doing all i can not to cry! my doctors office said the soonest they can see me is tuesday....what can I do? I don;t want to go to ER or Urgent care and be turned away. I've heard that they wont treat CRPS or Chronic pain conditions or give pain killers for it....what can I do I seriously can NOT take this. My pain level is probably about a 9 right now! They've given me tramadol 50 mg and its like taking baby aspirin. What can i do I've read urgent cares and hospitals won't deal with these disorders but my doc wont see me till Tuesday......I really need relief please what will work?
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Unread 11-29-2012, 01:01 AM   #2
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This might help http://www.openfocustraining.co.uk/exercise.html
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Unread 11-29-2012, 08:07 AM   #3
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Who diagnosed the condition? Have you gotten back to them by phone to tell them the pain meds are NOT WORKING? Have you been referred to a pain management specialist?

It is important to learn about this condition and to be proactive in your care. For me, I will call the doctor's office if I am not getting the results they expected from an RX or if I am having negative side effects. Some people are not comfortable doing this, but i find that if I speak to the receptionist or ask to talk to a medical assistant, they will get the message to the doctor and get back to me. Be sure to leave the name and phone # of your pharmacy.

You should not have to be in such pain waiting to see your doctor. I know it is excruciating. You deserve some attention and relief.

As for ER and urgent care - they are less than likely to be familiar with crps and may treat you as a drug seeker. Call the doc who prescribed your meds! You are worth it!

Love,
Jenny
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Unread 11-29-2012, 11:03 AM   #4
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I agree that you should definitely call the doctor's office and see if they can call something in for you. The hard thing with CRPS is that it is often getting the right mixture of meds more than getting the right ONE med that helps with the pain...at least in my experience. When I was taking tramadol I was also on meloxicam (anti-inflammatory), lyrica, and doxepin (anti-depressant). This was a good combo for me in the beginning and it helped manage the pain levels to a bearable level of 5-6 on a constant basis (though I regularly had flares). You should only go on one med a time however so it can take a while to get the combo right.

That said...it doesn't really help you much right NOW. Have narcotic pain meds like Norco helped you pain at all? They didn't help mine at all...less than the tramadol...but if they do then you might be able to get an Rx of them at the ER. The ER also might be able to give you something while you are there to get the pain levels down and at least break your current pain cycle. I know I have usually been treated okay at the ER...but there's not much they can do for me because of the nature of this RSD beast so I go in with pretty low expectations. Sometimes at the ER though they can contact my doctor and get my appointment bumped up quicker.

If you have a family doctor you might...stress MIGHT...be able to help you out with something in the short term. I would not really recommend this because too many doctors getting mixed up in your meds and treatment can create a bigger mess...but if you are at the end of your rope and if your pain doctor doesn't get back to you then it's another option. Really depends on the doctor what, if anything, they will be able to offer you.

Is there anything that you know of that helps ease your pain? Heat, for example? It helps mine and many others so I find hot baths with Epsom salts can help when my pain levels are high. I also have a portable TENS unit and a portable ultrasound heat therapy machine that help. And then there's also a space heater that I will set up next to my chair so the heat blows directly on me when I am going to be sitting for a while. Also...those heating patches you can get at the pharmacy (therma-care and the generic versions) that can be applied directly to an area and worn as you move around.

Good luck and I hope you are able to find some relief soon. Take care.
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Unread 11-29-2012, 12:45 PM   #5
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Thanks for the care and support everyone! I ended up going to the ER as the urgent care my DOCTOR told me to go to refused to help me! All they did at the ER was give me a shot if Dilaudid which at least worked to immediately lessen the pain. But it didn't last long and I still felt the pain right through it. They prescribed me a low dose or Percocet 5-325mg tabs. But I have to take 2-3 of them to get relief, and I only have 20. I finally was able to get a referral to a neurologist but my Pain management doc sd they are basically worthless. As they only diagnose and not treat the problem. I was already diagnosed with CPRS last week, and that Doctor is trying to treat it very aggressively to prevent to spreading to the disease. Unfortunately I guess the elbow and arm and hand are the worst (pain wise) place to get this "disease". I just hope they either get me in fast or refill the pain meds because i don't think I can make the 20 pills stretch for a week...
ALSO I'm having to go back and forth and back and forth between the hospital claims department because I was injured by one of their employees and the doctors office I'm trying to be seen at. The claim was supposed to be opened like 4 weeks ago and no wonder they never got back to me the other risk management "manager" never opened a claim. I am getting so frustrated. The new doctors won;t see me without having the appointment approved by the claims department!!! I'm going to call and ask for supervisor. My treatment is being delayed because someone didn't do their job!! Grr! Everything I've read has said the faster the treatment the better chances of complete recovery. My current Physiatrist/Pain-management Doctor doesn't do the IV sympathetic Blockade (phentolamine) and referred me to another clinic. They won't see me without knowing The hospital is going to pay.......again the claim was supposed to be set up 4 weeks ago.......I am so mad. Plus exhausted. in pain, and generally ******.....

Last edited by CRPSsongbird; 11-29-2012 at 03:56 PM.
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Unread 11-29-2012, 04:13 PM   #6
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Also the pain is moving up my arm....starting to feel like someone is sticking me with a small knife in my collarbone...is this normal?
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Unread 11-29-2012, 06:40 PM   #7
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Quote:
Originally Posted by EMILY ANDERSON View Post
Thanks for the care and support everyone! I ended up going to the ER as the urgent care my DOCTOR told me to go to refused to help me!
* * *

ALSO I'm having to go back and forth and back and forth between the hospital claims department because I was injured by one of their employees and the doctors office I'm trying to be seen at. The claim was supposed to be opened like 4 weeks ago and no wonder they never got back to me the other risk management "manager" never opened a claim. I am getting so frustrated. The new doctors won;t see me without having the appointment approved by the claims department!!! I'm going to call and ask for supervisor. My treatment is being delayed because someone didn't do their job!! Grr! Everything I've read has said the faster the treatment the better chances of complete recovery. My current Physiatrist/Pain-management Doctor doesn't do the IV sympathetic Blockade (phentolamine) and referred me to another clinic. They won't see me without knowing The hospital is going to pay.......again the claim was supposed to be set up 4 weeks ago.......I am so mad. Plus exhausted. in pain, and generally ******.....
Dear Emily -

I am so sorry to hear this is happened to you. Your pain right now is off the charts - we know that because CRPS pain is almost always the worst at the onset of the disease. Or at least that appears to be the consensus among those who suffer from it.

And you are absolutely correct that (1) you are being stroked by the hospital and (2) time is of the essence in getting treatment. But there is some good news in all of this: a third-party is responsible for your injury, treatment and subsequent compensation. All of which translates to the following: GET AN AGGRESSIVE ATTORNEY NOW!!!

A good plaintiff personal injury firm should be able to help you get immediate medical attention in one of two ways: either getting the hospital to pick it up ASAP without it having to immediately concede legal liability to you, or (2) though the use of a physician who is willing to take a lien on your subsequent recovery in a lawsuit or settlement. And two things are important: (A) the law firm is sufficiently convinced of both the magnitude of your injuries and the liability of a solvent and/or insured potential defendant to precede on a contingent fee arrangement, and (B) the doctor you see must be competent to do the job in a professional and disinterested fashion. And the last point is of particular importance in a medical malpractice situation, where it's in the defendant's interest to steer you to a treating physician who, while treating you, will be careful to spin her/his evaluations in a way that might not always be best for you. (Trust me, that's happened to people on this forum. Hopefully you are finding your physicians independently of the hospital.)

Generally speaking, there is one reliable data base for trained management specialists, and another for "peer reviewed" attorneys, that is lawyers who are rated anonymously in terms of their competence and ethical practice by other lawyers in their community, and if it's a large enough community, their area of specialization as well.*

The directory for pain management physicians of that of the American Board of Pain Medicine, the most selective of such groups in the country, which requires that every physician seeking its certification both complete a one-year clinical fellowship, over and above a basic residency, and thereafter pass an 8-hour written exam. And checking under Spokane, we have three doctors, all of whom completed their underlying residencies in anesthesia:
T Daniel Dibble, MD
1117 N Evergreen Rd Ste 2
Spokane, WA 99216
OFFICE Phone: 509.363.3100
OFFICE Fax: 509.363.0300
Email: dibble@spineteamspokane.com

Robin J Gavelin, MD
OFFICE Phone: 509.838.8561 [no other information on ABPM site]

AND

William L Weigel, MD
105 W 8th Ave Ste 200
Spokane, WA 99204
OFFICE Phone: 360.373.9026
OFFICE Fax: 360.479.8609
The search for apparently competent and peer-reviewed plaintiffs' attorneys in Spokane proved to be more challenging. The place to go is martindale.com fka Martindale-Hubbell, an information services company primarily for the benefit of out-of-town attorneys looking to find to local counsel in a distant area, founded in 1868, now owned by LexisNexis, a division of the mufti-billion dollar Dutch publisher, Reed Elsevier. Long and the short of it, checking for "rated" personal injury attorneys Spokane WA comes up with three firms, two of which are oriented to representing defendants. Which leaves by default one firm, but it looks like a pretty good one, Messina Bulzomi Christensen, P.S. And although based in Tacoma, they have apparently have Spokane office, or as is not uncommon, may sublet space from another firm while seeing clients in Spokane. Without offering an endorsement of any kind, except to say that if it was for me or one of my relatives, I would give them a call first: 253-617-0044.

Finally, as to the matter of "I ended up going to the ER as the urgent care my DOCTOR told me to go to refused to help me!" I have some not so good news. The treatment of chronic pain patients in the State of Washington has been captured for all intents and purposes, AS WELL AS BY STATUTE, by the academic school of thought known as cognitive-behavioral pain management, aka exposure therapy, aka stress inoculation training, aka cognitive processing therapy, aka dialectical behavior therapy, aka acceptance and commitment therapy ("there is no cure so just learn how to function without the assistance of opioids of any kind") which is coordinated out of the Department of Psychiatry of the University of Washington's School of Medicine. As a result, Washington now has, by far and away, the most restrictive laws for the prescription of opioids of any state in the country, and particularly with respect to prescribing for chronic pain patients. See, e.g, Rules Hurt Patients with Pain in Washington State. accordingly, and sad to say, any physician other than a pain management specialist has to be extremely careful in prescribing opioids. (And they don't make it all that easy for certified pain specialists either. Doable, yes, but easy, no.)

Which is to say, I'm sorry, but the State of Washington probably represents the nadir of intelligent thought when it comes to the treatment of chronic pain conditions. And in that regard, you may have pulled the short-straw. Not sure what to say, other than I'm sorry you're in the middle of it. But be glad you're in a relative large community with three board certified pain specialists: pity the folks in rural areas!

But time for that later. I've probably given you TMI already. Right now, it's time to line up a good lawyer.

Mike


* For the record, I know of the former through my experience of 11+ years as a pain patient, having seen pain management doctors from USC, UCLA and Cedars-Sinai in Los Angeles, to the Mayo Clinic, Johns Hopkins and Robert J. Schwartzman, MD of the Drexel University's Department of Neurology in Philadelphia, etc. And I know from attorney rankings based on over 20 year of work as a business bankruptcy litigator.
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Last edited by fmichael; 11-29-2012 at 07:30 PM.
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Unread 11-29-2012, 07:10 PM   #8
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WOW! Thanks Michael. This is probably the most informative answer I've ever had. i will look into thw lawyer thing again. i called and asked around but I mostly got the answer of "that can happen" its part of the risk with a venipuncture procedure. Basically saying i wont have a case big enough $$ wise for them to pursue.....i think its a load of bs and that a good enough attorney could get m,e actual compensation.... Yes I think I might need a different PM doc as well as a new PCP. the PM doc only works 3days a week in my "new" condition a lot is happening and I need a doc that is there at least 5 days a week. Also my PCP is though a "state-run" low income clinic so they are even less likely to prescribe anything that will give me true pain relief. sometimes all this is enough to make me SCREAM......
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Unread 12-02-2012, 10:16 PM   #9
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I take a 650mg tylenol and 200-400mg advil with EACH dose of tramadol, per my dr. It makes the tramadol work so much better! I am sorry you're in pain! What did the dr end up giving you?
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Unread 12-03-2012, 01:27 PM   #10
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Quote:
Originally Posted by redraidermommy View Post
I take a 650mg tylenol and 200-400mg advil with EACH dose of tramadol, per my dr. It makes the tramadol work so much better! I am sorry you're in pain! What did the dr end up giving you?
I was on 5-325 Oxycodone from the E.R. But currently still only the tramadol. And I think I am building a "tolerance" to it so it is even less effective. i think I need to be on a "nerve" focused pain med. But I couldn't tolerate the Gabapentin. I have a list of others to talk with my Doctor about. I'm still being dinked around with by the hospital's claims dept. so am waiting to see the new Specialist and stuck with my current providers......grr. But am going to try and make the best of a crappy situation. I have talked to a lawyers office (thanks fmichael) and am awaiting their response.
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