hi everyone! Need advice
 

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.

Hello
 

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?
:hug:

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:mad:, 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.:)

SPread
 

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

Deb

I was just thinking of you. You know I am here for you to talk anytime day or night. I was worried. I did a day patient well for 4 days because my pain was too high but anyhow these programs don't use as needed meds like opiates etc only the ones like neurontin. My current pain doc feels the same way as in the long run he said that your body begins to process pain more when used on a regular basis and you would need to keep increasing to get any benefit. I think as a once an awhile thing it is different. I am not sure the answer and to I think everyone with rsd responds to treatments different. I am sorry for all though who have to deal with WC pushing something. I don't like giving advice on what people should do for treatment because what may help one person may be torture for another. I do feel for you on a side note that you need to work on some of the stresses in your life and over doing it. It is ok to say NO to someone. It does not make you a failure nor does asking for help and support. It is a success to reach out and know your needs and barriers. I do think that certain type os coping that some of the programs aid with like biofeedback,family and self therapy though does not take away the rsd physical pain can aid with the depression/anxiety and also help families to understand. I saw your other post as well about the detox. Can you ask your doctors what the long term plan would be and what types of other relief or treatments you could try especially if the pain gets to a bad state? You are in my thoughts.

hey
mike is right,,lamene terms,,,,,,,,,,rotaion of meds, not increasing them ,Then if you come off of them opiods withdrawel[one of many] it makes you whole body ache,,even parts that are not afflicted,,flu like symptoms,,,ive been there,,,rotate not increase,thats where the danger is,,,,,,,and about w/c,,,,,,i fought them 15 yrs ago once,,,,,they just want to frustrate you to throw in the towel their dr,s are being paid to find something else that you did to say its a new injury,If they can do this and they will,,there goes your claim,,they try it with me for 2yrs,,,,i ended up getting a lawyer and they offered a low settlement,,i asked for a couplemore grand,,and thry settled,,,wasnt much 5 grand total back then,either way,,they by law have to take care of you,and they have to offer you a secound dr to go to,,,,good luck,bobber

Hi stressout,
I can't tell you how disturbed I am over your WC care of you, or rather lack of car. The only option they gave you were the blocks. That means to me, they are responsible for the outcome of the blocks.-----spread of RSD. There are many on the forum that have had bad results from blocks. In my opinion this PM Dr. doesn't know what he is doing. He doesn't sound confident in his treatment. Everyone knows how important it is to take care of the pain and sleep. Our condition worsens without these two elements being taken care of. Meds do not spread RSD! period As far as physical therapy, it was only because of physical therapy, I got the use of my left arm back after surgery and getting RSD the day following surgery. It took 100 treatments. They wanted to operate on my shoulder, but I said NO. I had private insurance. This was about after 50 treatments. and I was paying for 50 massage treatments to soften my shoulder and get more out of the p.t. I called my insurance company and told them my rehab Dr. that I was sent to after the surgery induced RSD sent me to orthopedic surgeon and he wanted to break my shoulder during surgery. I told them I would still need physical therapy after 'this' surgery. I told them I choose to have p.t. and massage therapy for my frozen shoulder and I could choose surgery or massage therapy with my pt. The agent said just a minute----came back to phone and said send your massage therapy bills to us, we'll pay them. I'm glad you have an attorney. WC is doing you a great disservice, actually putting themselves liable for your worsening condition. Document everything that goes on with your Drs., like your spasms and them not being in the notes. That's not OK
It's not OK that you are not given pain meds for RSD. There are others meds too, that my Dr. has given me to reduce nerve pain. Anti=depressants help greatly with nerve pain. anti-seizure meds help with nerve pain and can completely do away with spasms, jerks electric jolts, anti-anxiety meds help greatly to reduce anxiety and keep your system calmer, thus pain is reduced. I have not increased my 'pain' med, vicodin in strength or amount in over 5 years. Because I'm sleeping good now, my Dr. cut my anti=anxiety med in half, and I'm taking 5 vicodin instead of 6.
I'm sorry you are having to deal with WC, but let your good attorney take the stress off you and call the shots. Keep a record of what he needs to know, and tell him what is happening. Being in pain creates more pain and activity of the sympathetic nervous system, like spread. Hope the best for you, stay with us, we all need support. Soft hugs, loretta smiley face

Wow,

While I certainly agree with the results of this study and I certainly appreciate pain meds, I am afraid that if you have type I CRPS, you are excluded from this cohort. The only possible inclusion for CRPS patients as so far as this abstract is concerned is that it addresses neuropathic pain, for which you could infer type II CRPS, but without reading the full text article, it may have nothing to do with us. So, to therefore take this to the bank, might work, or could severely blow up in your face.

I am not a nay-sayer, just evaluating the abstract for what it says...

Neuropathic pain is burning pain...be it CRPS I or II, the burning pain comes by the pain receptors changing to a hyper state. The burn is still a burn.

thank you all
 

Thank you all again for your input and thoughts it means a lot to me. I feel like they have no other options for me but this pain clinic because I have finally found a drug regiment that works for me and now I have to change it again! I have tried so many...anti-depressants, nerve meds, even anti-seizure meds (i take baclofen for spasms). My case manager is the one really pushing this clinic...it was her idea from the start all because I asked for a different doc because mine was incompetent. She came up with this and I told her over and over I didn't want to do it....then she got all my current docs on the plan-especially my pain doc...now I don't feel like I have a choice because I am worried my pain doc will just cut me off and then I will be screwed! I could cry I feel so backed in a corner.
The attorney told me to get the eval done and then take the plan somewhere closer to home so I wouldn't have to leave my home for almost a month. They really didn't give me much of a plan...and when I asked about delayed pain from the 8hrs of pt they want me to do a day...and flairs they had no answer for what they would do to treat it. I know my spread can't be from the meds....they seem to think my legs are just sensitive nerves from long term use of narcs....but why would my hair fall out, my feet turn blue and my legs swell....usually with nerve senistivity it is just pain.
I guess I need to try....one of my great friends from here told me to stand up for myself if I go. If my pain is not controlled, to say something and not just let them make me tough it out.
Thank you all for your support!
Jennelle

Just dropping in to share a bit of my story...

RSD 5+ years... NO NARCOTICS in the last 5yrs.... Found out through trial and error that I am SEVERELY ALLERGIC to every Narcotic pain killer we tried...we tried many!! Anaphylactic Shock with in minutes to a few hours....

My RSD has spread FULL body including organ involvement.

Narcotics did not cause my spread... not even close.

I wish you the best.....

:hug:gentle hugs,
Abbie

hi everyone! Need advice
 

Jennelle, I also agree with everone on this. Do not let them play mind games or body games with you! I once went into a detox center on my own. This was before my RSD had been dx. From the time I had my surgery and the Dr. cut thru the nerve on my L small toe,it took over two and one half years for anyone to figure out that I had RSD! So when I went into the detox place to get off everything that I was taking,I was in there for over 6 weeks. When I got out by then I was shaking so hard from being off of all of my meds. I had to go right to a hospital,where they did fianally dx me with RSD. Then it took 2 years of pt and ct so I could do things by myself. Then came the time it took for going thru the loops for SSDI! Please stick up for your rights,get a mean lawyer. Do not go off of the medicine that helps you thru your days and nights. If it were me I would not go back to the pain clinic. It did nothing for me,just a wast of time. Good Luck! :hug: