Hi everybody! sorry I haven't been on in a long time...i have been in a bad place, really depressed and feeling hopeless. The pain clinic that I really don't want to go to is being pushed in my face. Worker's comp is making me feel like if I don't do it that I have no other options. Lots of you have gotten more stable without going to pain clinics...what do you all do?
I talked to a lawyer and they said to see what they had to say....then I could take that plan to a different place and get it done. They didn't give me a clear plan. i am confused and lost.
My fiance JJ doesn't want me to go because I would have to leave home for around a month....coming home on the weekends only. They want me to go to a place to get off all narcotics and get on some med that starts with an S. I asked what I would do about flair-ups and they had no answers.
Any advice?
They also said that the narcotics are what made my rsd spread to all limbs.....anyone else heard of this. I know that there have been postings on it before but I missed those. Anyone have any research to back this? All the rsd sites I have seen don't say anything about this making it spread.
sorry to come out and ask for help after I have been out for so long...but I need you guys.
Thanks....
Lots of love and hoping that you all have been doing better!
Jennelle

i did a bazillion hours of research on rsd and everything about it for my paper i wrote for class, and i never once came across anything that said narcs make it spread.

i do know that once i got off the narcs and switched to taking ketamine orally i gradually began to feel better. that and just using heat. the only other thing i took was flexoril for when my arm/hand would start spazzing out. and believing that i was in control of my life instead of the rsd controlling me. i started going out with my friends more, i just had to learn to balance what was too much and not push myself too far, or else i'd be in bed the whole next day. although some things i thought were worth it. the more distracted i am the less i'd notice the pain.

i have been in remission for 3 months now after my second ketamine infusion which was only a 4 hour infusion. which is why i'm hoping i can get ketamine in my anethesia mix when i have surgery.

being able to know what'll cause a flair and being prepared to have one i found to be key cause then it wouldn't knock me on my *** so much...

i hope you're able to find something that works for u.

Hi Jennelle,
It is good to see you again.

My ortho doc would not prescribe more than Darvacet and 800 mg. motrin. He wanted to stop the Darvacet,too!The ortho doc told me that to continue with any pain med in that category, or higher,like Lortab, would excite the pain receptors even more, and then my body would be in a constant state of pain. I told him I was in a constant state of pain,already!!

That is when I went to PCP, she dx RSD, and the Neurontin, Lortab, etc., began. Then eventually, I was sent to PM doc, and now he handles my meds.

I was wondering how things were going for you. Listen to your lawyer. Why aren't you receiving proper pain management? Irritating, isn't it? Hang in there..sounds like you are still fighting the WC dragon. Keep your sword up..well, let the lawyer be your sword. That is why he gets paid.

Keep me informed of how you are doing,ok?

Jennelle,
I couldn't agree with these two ladies more!
They know of what they speak.

If you are "forced" to this PM place, you'll merely need to "prove them wrong"! But, before you go, why not ask for the "literature" where any doctor has written, that narcotics cause the rsd spread? Force Them to produce! Not use you as a test dumbie!
No need for that!

Also, WC, is a "dragon" as Dew said, why don't you have the best lawyer you can find?

We're all in your corner!

Wish you the best!

Pete

HA! Pain meds do not make rsd spread, the pain signals traveling from screwed up nerve ending to our spine and back again makes it spread!!!!!

Keep saying no to WC!!! I have known quite a few people who went to these so-called pain clinics and they were treated like crap. They were in agony, no one cared. There is NO reason whatsoever for you to "detox" off your meds, ever! Not to do this. It serves no purpose at all except as torture. It is modern day torture!

It's all just BS. I'm so sorry they're doing this to you. Wish I had more to give you than *hugs* but I know you appreciate them. :-)

*Lots and Lots of Big Hugs*

Karen

Dear Jannelle -

Whike I agree with everyone else that there is no evidence linking narcotics to RSD spread, you should be aware that there is plenty of evidence to support the proposition that too much opioid consumption may result in a condition called hyperalgesia, which "has been recognized as a potential form of central sensitization in which a patient's pain level increases in parallel with elevation of his or her opioid dose." See, Significant pain reduction in chronic pain patients after detoxification from high-dose opioids, Baron MJ, McDonald PW, J Opioid Manag. 2006 Sep-Oct;2(5):277-82, free full text at http://www.rsds.org/2/library/articl...n_McDonald.pdf, the abstract of which follows:

Opioid tolerance is a well-established phenomenon that often occurs in patients taking opioids for the treatment of chronic pain. Typically, doctors need to periodically elevate patients' opioid doses in an attempt to manage their underlying pain conditions, resulting in escalating opioid levels with only moderate to negligible improvement in pain relief. Recently, opioid-induced hyperalgesia has been recognized as a potential form of central sensitization in which a patient's pain level increases in parallel with elevation of his or her opioid dose. Here, we report a retrospective study of patients undergoing detoxification from high-dose opioids prescribed to treat an underlying chronic pain condition which had not resolved in the year prior. All patients were converted to ibuprofen to manage pain, with a subgroup treated with buprenorphine during detoxification. Self-reports for pain scores were taken at first evaluation, follow-up visits, and termination. Twenty-one of 23 patients reported a significant decrease in pain after detoxification, suggesting that high-dose opioids may contribute to pain sensitization via opioid-induced hyperalgesia, decreasing patient pain threshold and potentially masking resolution of the preexisting pain condition.

PMID: 17319259 [PubMed - indexed for MEDLINE]

That maybe what they were referring to. But the question becomes whether your narcotic use is high enough to tigger even hyperalgesia in the first place? (And keeping in mind that if your therapists have any connection with the University of Washington, they will definitely be of the "grin and bear it school of thought.)

Ind fact, instead of complete withdrawl form opioids, the more enlightened view seems to be that of opioid rotation, where when a level of a narcotic (Oxycontin, Morphine, Fentanyl, etc.) is no longer working, instead of increasing the dose and inviting more problems, you're just switch out the one narcotic to another, without increasing the overall amount of opiods you're on. See, e.g., Opioid rotation from high-dose morphine to transdermal buprenorphine (Transtec) in chronic pain patients, Freye E, Anderson-Hillemacher A, Ritzdorf I, Levy JV, Pain Pract. 2007 Jun;7(2):123-9. Heinrich-Heine-University Clinics, Moorenstrasse, Düsseldorf, Germany. enno.freye@uni-duesseldorf.de

And here's the abstract:

Opioid rotation is increasingly becoming an option to improve pain management especially in long-term treatment. Because of insufficient analgesia and intolerable side effects, a total of 42 patients (23 male, 19 female; mean age 64.1 years) suffering from severe musculoskeletal (64%), cancer (21%) or neuropathic (19%) pain were converted from high-dose morphine (120 to >240 mg/day) to transdermal buprenorphine. The dose of buprenorphine necessary for conversion (at least 52.5 microg/h) was titrated individually by the treating physician. No conversion recommendations were given and the treating physician used his or her own judgment for dose adjustment. Pain relief, overall satisfaction and quality of sleep (very good, good, satisfactory, poor, or very poor), and the incidence and severity of adverse drug reactions over a period of at least 10 weeks and up to 1 year was assessed. Following rotation, patients experiencing good/very good pain relief increased from 5% to 76% (P < 0.001). Only 5% reported insufficient relief. Relief was achieved with buprenorphine alone in 77.4%, while 17% needed an additional opioid for breakthrough pain. Sleep quality (good/very good) increased from 14% to 74% (P < 0.005). Adverse effects were reported in 11.9%, mostly because of local irritation, did not result in termination of therapy. Neither tolerance nor refractory effect following rotation from morphine to buprenorphine was noted. Conversion tables with a fixed conversion ratio are of limited value in patients treated with high-dose morphine.

PMID: 17559481 [PubMed - indexed for MEDLINE]

I hope this is helpful. And good luck!

Mike

Jennelle,
I feel for you. I am dealing with WC too right now. I have never had pain meds, I am left to deal with it on my own. I was told the only thing the pm Dr could do for me was nerve blocks. After 6 of those and only lasting about a wk and a half it all came back worse. Now he has put me on Lyrica. As I was increasing the dosage my tremor was getting worse (pm Dr claims he knew nothing of a tremor-nothing written in his notes yet the PT,hand spec. and nurse during one of the nerve blocks all saw it)he then decreaed the dosage but now today wants to double it. I am still in PT but both the Dr and WC ins co. said finish in 4 more sessions. I do have a lawyer now that I am going to call tomorrow, the therapist thinks I should also have been on anti-inflammatories and something to deal with the pain and that I need more therapy. I still don't have full function in my hand but the Dr doesn't even check that. WC sucks. I am scheduled for an FCE in 2 wks so they can see what I can do, so they can get me back to wk and off wc I guess. I am planning on getting in to my pcp and seeing what they say (not sure who will cover that;my ins or wc?). I feel like I have no say in my care either.

Back to your problem; I wouldn't go to the pain clinic. Get your lawyer and pcp to speak up. I have to try doing the same for myself, I'm just not good advocating for myself. My rsd has spread from my original injury in my thumb to my hand and all the way up my arm and I haven't had narcotics.
I'm just wishing I would wake up from this nightmare.

Hi Jennelle,,
Please don't apologize for being away. We all need to withdraw from time to time, even though it may not be best for us. I'm so sorry you are going thru this junk with WC.
They should be fighting for you getting the best possible treatment. It's an insurance company that your employer paid for your protection and medical care. They owe you!
You need a mean attorney.
I have full body RSD and it has nothing to do with meds. I have only read of one Dr. with the thinking of us patients going off narcotics so our own endorphins can work better to care for the pain. His website is www.rsdrx.com
Dr. Hooshmand is retired now.
I have one Dr. that cares for my meds. I know he knows what he is doing. I've been on vicodin for the last 8 years or so. I haven't gone up in amount, in fact have started to go down one pill at a time. I take 6 a day, about a yearand a half ago I was down to 4, then someone very close to me, died in a car accident and I've been up to 6 since. But now feel I can go down one or two, except when in a flare.
Don't let them make you feel like a addict. I would think you would know, by progression or taking meds when you feel you don't need them. I feel level, except when stressed or sick or the weather and stay consistent. Please know we are all with you.
I know it's awful to feel lost, no hope, & extremely depressed. It does help to talk here. My Dr. is a psychiatrist and talking to him once a month does me so much good. He also is a neuro. and pharmacologist, so I know he understands and is very capable, so I trust him. I know he is conservative and doesn't want me in trouble with meds.
Do you have a hired attorney, it sorta sounded like you just talked to one. Anyway,
having a good attorney can take a lot of stress off of us. Let them do the work. Your friend, loretta

Outstanding research,Mike, Thank You so much for the effort you place into your posts.

Opioid rotation is the path my PM is following. I am in a place where my pain is tolerable, and does not rule my every thought.


Opioid rotation is increasingly becoming an option to improve pain management especially in long-term treatment. Because of insufficient analgesia and intolerable side effects, a total of 42 patients (23 male, 19 female; mean age 64.1 years) suffering from severe musculoskeletal (64%), cancer (21%) or neuropathic (19%) pain were converted from high-dose morphine (120 to >240 mg/day) to transdermal buprenorphine. The dose of buprenorphine necessary for conversion (at least 52.5 microg/h) was titrated individually by the treating physician. No conversion recommendations were given and the treating physician used his or her own judgment for dose adjustment. Pain relief, overall satisfaction and quality of sleep (very good, good, satisfactory, poor, or very poor), and the incidence and severity of adverse drug reactions over a period of at least 10 weeks and up to 1 year was assessed. Following rotation, patients experiencing good/very good pain relief increased from 5% to 76% (P < 0.001). Only 5% reported insufficient relief. Relief was achieved with buprenorphine alone in 77.4%, while 17% needed an additional opioid for breakthrough pain. Sleep quality (good/very good) increased from 14% to 74% (P < 0.005). Adverse effects were reported in 11.9%, mostly because of local irritation, did not result in termination of therapy. Neither tolerance nor refractory effect following rotation from morphine to buprenorphine was noted. Conversion tables with a fixed conversion ratio are of limited value in patients treated with high-dose morphine.

PMID: 17559481 [PubMed - indexed for MEDLINE]

Jennelle..it is odd that WC is making you go through this program. What is their basis of thought for an outcome? How will you handle the pain once you have detoxed? What really bothers me is that patients in chronic pain DO NOT BECOME ADDICTED to their pain meds..as the patient takes the meds to ease pain..not to get high. I don't know about you all, I do NOT get a high from my meds. I would be interested in your replies.

I did not take narcs and my RSD has spread -especially after a hip replacement. Surgery can make RSD spread- Not narcs

Deb