Reflex Sympathetic Dystrophy Syndrome - Why is it so impossible to get medication for pain? I swear?

Posted:: 26 Jan 2010 by melia357
Topics:: pain, reflex sympathetic dystrophy syndrome

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... some doctors have no clue what we go through. I recently lost my doctor of 6yrs. I am lost on what to do, these doctors are making me feel like I'm crazy. I guess the real question is, does anyone know of a doctor that will help me?

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mpvt

26 Jan 2010

I found this:

Is there any treatment?

Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms. Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain. However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms. Other treatments may include physical therapy, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.

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kansaspain 6 Mar 2011

I was ran over by a vehicle 15 months ago and diagnosed with RDS within a couple of months after the accident. I have been on lots of different meds but i hate taking them because I was addicted to meth before and am scared to be addicted to anything. I think my case is weird because my pain comes and goes. One day I am ok, walk almost without a limp and the next day or even next time i stand up from a chair I am in horrible pain and can barely move. My actual rds was diagnosed in my foot and ankle but now my hips and backs are almost worst than the foot and ankle. My husband thinks I fake it because i hurt and cry so bad one day and the next day i barely limp. I try not to take the meds so much so he doesnt think that i fake it so i can get high off the pain meds but sometimes i get where i cant even move when the pain is so bad. my orthopedic surgeon has made appts with a pain specialist dr but my friends tell me not to go because all they do is get me hooked on meds.

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popcornhead34 4 Oct 2011

I totally understand everything you have just said. I have CRPS II and they didn't catch it until five months after I fell and a wheelbarrow fell on it. I don't think that our spouces really understand what it is we go through on a dail basis. I have tried alot of things and I have most of my relief with hydrocodone 10/325 and meloxicam and anxiety meds. Therapy also works but when I stop the therapy lesson I hurt again. Blocks haven't worked for me either and had a green light for the trial of a stimulator until work comp cut me off. I had to start all over finding doctors that would prescribe the meds. We will never be cured for this but to think one day it could happen and in the mean time we all need to try to find medications that work and the right doctor's to help.

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rfoehl71

26 Jan 2010

First; you are not alone. Although I dot not have RSDS, I do have cervical nerve root impingement, Fibromyalgia, and a ton of other arthritis and spinal issues along with sleep disorders. I know my medications fairly well, and alternative treatment options.

No matter what we all may have (diganoses); in the end we are both dealing with how to treat PAIN.

So many doctor's do not understand how hard it is to be in pain everyday, all day, with no break.

What you need is to find the right doctor, and don't stop until you find him/her. The right doctor will help you with medication and help find you the right treatment options (such as below).

I cannot see where you live, so I cannot make a recommendation as to a specific doctor - feel free to "friend" me :)

You could try to find a Pain Managment Center that inclused a staff of injection specialists and that provides many option methods of Pain Management (injections, accupuncture, accupressure, etc.).

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melia357 12 Feb 2010

rfoehl71,

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Thak you for responding. I live in Western Pa where most doctors do not know much when it comes to RSD. I had a spinalcord stimulator for 5yrs. It was removed last Aprial when the battery died on me. After talking with my doctor. It seemed best to have it removed for all the relief it was providing. Now that my doctor has retired the women who took his place wants it put back in. She sent me to a doctor who deals with these divices. He suggested against it. Now she wants to do a morphine pump so the medication is more controlled. Now I could see doing that to me if I was short on a pill count or failed a urine test. In the 6yrs. I have gone to this Pain Clinic never has this happened. I looked into these pumps and I see how it would benifit the doctor but not me. I am 28yrs. old and do not want my organs shuting down on me in 3 to 5 yrs. I have taken the medication I am on now for over 8yrs. I have all internal organs checked out once a year and there is no problem as of now. I am so worried if I keep with this doctor my quality of life will continue to go down hill. It took years but I was finally starting to join ther human race again. I am now back to where I was 9yrs. ago. I cant stand feeling helpless and sitting alone. I am starting to get depressed again I just do not know what to do. I have tried antidepressents I always seem to get more depressed than before starting them. I had to be taken off on right away because I was having thoughts of suicide. I'm not going to lie to you when first dignosed I was so depressed I tried killing myself. I was so tired of the pain and the feeling there was nothing I could do about it. Now when I look back I never want to be in that place again. I have talked with my doctor about all of this and she just doesn't seem to care. I have no idea how you can be a pain specialist if you have no compasson for the people you are treating. I feel like the life I have bulit is crumbling apart. Thank you so much for reponding. It really made me feel like I'm not alone and I have support when I need it. Thak you for that. I hope to hear from you again soon.

Danielle (melia357)

RSDHurtzme 21 Jul 2010

I am writing in hopes that you have found a new doctor by now. I just found a new doctor in the past month. I knew I had to get out of the place I was at even though I got my scripts due to seeing "drug seekers" in the waiting room and feeling that I looked bad for going there. The doctor didn't spend more than 3mins with me but wanted to see me every 28 days. If you have had RSD for 3yrs and are stable on pain meds along with not wanting a SCS or pain pump, you need an Internal Medicine doctor that knows about RSD. I was blessed enough to find one after going back to my 1st pain doctor who diagnosed me with RSD. He told me I had no business remaining in pain management after 11yrs, 9yrs on the same doses of meds for pain.
A real pain doctor/Internal doctor who knows about RSD should not withhold meds that can relieve your pain at least by 60% or more.

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I have had to take a long lasting strong narcotic for almost 11yrs and have remained on the same dose for almost 9 now due to the fact that I was only 31 when I got RSD from an auto accident which made it start in my right foot and has spread up my right leg and into my right hip/back area.
I saw the doctor that supposedly runs 3 or more of the same pain clinics in my state one time last August. He did no physical exam, I asked him to run any tests known to man and to look at my records dating back to the date of the accident and he refused and ripped up my monthly scripts. Because of that I went into full detox and even though I was offered my strong med the next visit by my regular pain doctor, I refused for 2 more months saying I never wanted to go through that detox again and had done nothing to deserve having my scripts ripped up as I've done all they ask in the pain contract, have regular urine screenings and pass as they also test the levels of meds in your system.
I had noticed seeing many people that anyone would see as "drug seekers" in the waiting room for almost 2yrs. I couldn't figure out why they were seeing these patients until recently it broke all over the local news in IN that this head doctor was over prescribing narcotics in exchange for unnecessary procedures, re-used needles on more than 100 patients, and had bilked Medicare, Medicaid, and another ins co out of more than 21 Million in less than 2yrs.
On my last visit there (as I had found a new doctor but didn't have an appt in time to get my scripts so I knew I was leaving) they had a waiting room so full that it over spilled into the hallway. I realized after seeing what I did on TV that the doctor who ripped up my scripts refusing to exam or test me did so most likely due to reading my own med records there showing I refused to have a SCS put in and had remained on the same dose of meds for so long. He apparently wanted patients he could use to make more money off of.
That is where you must be careful when offered the SCS or a pain pump as doctors make a lot of money from these surgical procedures and both have problems where you end up having surgery every couple of years due to problems/issues with these devices.
Going back to my 1st pain doctor (who used to believe in the SCS) told me he was happy I never got a SCS as it only works in 1 of 4 patients which is a 75% failure rate. Plus the surgical procedures to replace the leads and wires that grow into your tissue every 2 to 3yrs can only further cause the RSD to worsen.
He has now told me after all these years remaining on the same dose that I have NO business in pain management anymore. He said I needed an Internal Medicine doctor who could take care of my entire health and pain (as there are other problems that come with RSD down the road) and now I've already been diagnosed with RA and have an Internal doctor who is going to take over writing my scripts and wants to test me for Osteoporosis as that is something that is now known as common as RSD spreads.
RSD messes up your T cell counts (which can cause cancer and other havoc in your body internally) and affects your auto immune system.
If "trigger point" injections don't help much, you shouldn't have very many to begin with and I would never recommend a Sympathetictemy as it could leave you paralyzed and the benefits do wear off after time in most cases.
I have had to be my own best advocate in educating myself on RSD as so many doctors; even pain doctors, don't know the full scope of this disease and the ones who push the SCS and pain pumps really hard are in it for the money; not your best interest.
Please contact me if you ever have any questions as I've personally researched this disease since 2001 when I got my 1st PC. I've learned so much about RSD and what to do and what not to do.
Going back to my 1st pain doctor who spent time working with nothing but RSD patients at the Mayo Clinic has given me peace of mind letting me know my choices were good ones and I now have an Internal medicine doctor who took Anesthesiology classes (as pain doctors should be Board Certified Anesthesiologists) and knows a lot about RSD; more than my previous pain clinic doctor.
Many RSD patients speak to one another but we must realize we are all different but the one thing we do have in common is the same pain. It is unmistakable to us that have RSD.
Never stop educating yourself either online. Two great sites are rsds.org and rsdhope.org
We need awareness like Fibromyalgia. Those ads are paid for by Lyrica and drug companies. It would be hard to find a drug company that sells opiates to bring that type of awareness to TV. Paula Abdul would have been a great spokesperson but refuses and I don't know of any other famous person that has it or will admit to it.
Awareness is the one thing that will help millions of us with RSD. It is not a "rare disease" like it has been said to be. It mainly attacks women 18/35yrs old but there are many men and children that get it also.
It has been around since the Civil War and it angers me that there is NO real awareness for it.
I have offered to do TV shows like Oprah, Dr Phil and will continue to do so. I almost got on Montel and then his show was canceled.
We the patients must try to do these things to show awareness and what this disease really is as it has been called; "The Most Painful Chronic Pain Disease Known to Man" from rsds.org
I have also participated in a long term study of CRPS on the site above and ask that anyone with it at least tries to enlist to only further help others and doctors understand.
I have found people that love us want to help so bad but even with much empathy they can never understand the pain and everything else that goes along with it like others who have it can.
My prayers are with you...

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kimmie1

26 Jan 2010

One less thing I do not have either. I am very sorry to hear your story. This is mine. I can relate however with my disabilities. I live in Texas. And, after 12 years of seeing one doctor, I made a huge mistake and went to another doctor for almost the same thing. He called it doctor shopping and dropped me like right now. I am on methadone so as you can see I was in a bad place. I did not go to anyone seeking methadone and I only really went to this other doctor because he is in my little surrounding town and I was really hurting. I had fallen on my tailbone in terrible pain. I had seen my regular doctor for that specific reason twice and he just would blow me off and I must confess I did want to get some soma for other reasons I would rather not get into, but it did cost me my doctor. I was ready for detox and all the other crap that goes with it. I did find a clinic that was ready and able to work with me but low and behold, my brother-in-law told me about his doctor.

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melia357 12 Feb 2010

Kimmie1,

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Thank you for the responding. I am from Western Pa and the doctors here seem to be clueless. I had been dealing with the same doctor for over 6yrs now. When he retired things started going down hill. I understand my med levels are high but wanting to put install a morphine pump come on. I have talked to many people who have had family members with a pump. Most of them say they were installed when the person was dying it make them more comfortable. I am not dying yet and my medication has not hurt me internally as of now. For 9yrs now I have been on the same medication. I have a quailty of life I do not want to lose. I now am trying to find a new doctor. My question for you is. When you were seeing other doctors did you except a prescrption from them? The nurse at my pain clinic does not believe I should have to deal with what I am. Only because I have been a paient there for 6 going on 7yrs. now. She also said I could see other doctors to see if they would take my medication over. As long as I do not except a prescription I would not have a problem. Is this true or can my doctor give me the boot? I have tried every option they have sugguested. Down to injections, spinal cord stimultion, and all these goofy meds that made me want to give up on life. In aprial of last yr. I had my spinal cord stimulator taken out. My new doctor wants it put back in. So she sent me to a doctor who installs these devices and he said no way I need to stay on my medication if its helping. God forbid my doctor wouldn't even listen to another doctor telling her how I should be treated. She's the one who sent me there and now she doesn't like what he had to say. She dropped my meds without letting me know and was really rude about it from what the nurse told me. I cant help that she is not on the same page as the other doctor. She sent me there to be evaluted I cant help what the other doctors opinon is. He specailizes in these devices and I think she should liosten some what to what he has to say. I'm sorry to go on and on. I'm just so angry about the entire situation. When I was 17yrs of age I was on a higher dose than now. I lower my dose myself and now wish I would not have. I would still be above the level I'm on now and it would have given me time to find someone who will help me. I feel like I'm going back to the dark depressed me. It took yrs. but I started to deal and have been living life to the best of my ablitiy. I'm teriffed to go back to that feeling of helplessness. Thank you again for responding Ihope everything works out for you.
Danielle (melia357)
p.s. please excuse all mis-spelling

kimmie1 12 Feb 2010

Melia, I have to tell the truth. I did go to the other dr. wanting first another opinion regarding my tailbond, and I did want soma. I had been to Dr. T before and I told my regular dr this. I did not go to him expecting to get more of the same meds my doctor was giving me but as I found out it doesn't matter. If you go to another dr to get narcotics they have every right to refuse treating you. I only went to one other dr in over ten years twice. But it did not make a difference. My regular dr called me ugly names, said I lied to him, said I was an alcoholic, which I cannot drink since I have acute pancreatitis and he knows that. I screwed up. But I really didn't think I deserved the degrating things he said about me. He is the one and the only one that has ever gotten me addicted or dependent on any pain medication. Got me up to 120mgs of methadone a day and then said bye bye. Go to rehab. You have a drug problem. Gee you think? oh well enough.

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RSDHurtzme 26 Apr 2010

To Danielle and Kimmie1,
I fully understand why Danielle does not want to get a pain pump. I was diagnosed in 1999 so it's been almost 11yrs now. I have RSD and have forced myself due to fear of medications and knowing my age to remain on the same dose of my pain meds for almost 9 of the almost 11yrs now.
I would not accept a pain pump as I know it is a serious surgical procedure and from knowing two people who do have them, they end up in the hospital many times because these pumps "flip" and have to be re-attached and fixed.
You are not a drug addict; you are dependent due to chronic pain.

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The doctor I spoke of in one thread that ripped my scripts up in front of my face and is the Head doctor of 7 clinics in the state of IN forced me into detox which upset me so much I purposely remained off of my strong narcotic (the only one that works & that I'm not allergic to) for 3 months.
It took any of quality of life I had away and that was in August of 2009. I did go back on my medication in November 09 but it took so much away that had taken me so many years to even gain the ability to do that even with the medication, I'm still paying for their mistake.
I was treated like a drug seeker and never went to another doctor even though I should have but I've been threatened literally in a signed contract that I was forced to sign when I did go back on my med that I would not go to any doctor asking for treatment of pain.
I have gone to the same place for almost 7yrs now and have never had any other office write any narcotic meds or meds they have given to me.
After a drug screen once I was called out at the next appt in front of the entire waiting room (breaking all HIPPA laws) by a nurse telling me that I had Morphine show up in my system. I had never taken Morphine except years before RSD in a hospital situation after outpatient surgery (which is how I found out I was highly allergic to it). I was taken back to see this doctor (who is now gone) who explained to me that NO, it wasn't Morphine, it was the medication I was prescribed.
I do not understand the mistreatment of chronic pain patients and how these doctors/clinics get away with it.
I have tried to find another doctor but they refuse my Medicare Insurance so I feel so stuck.
A new doctor is now there that I feel is much more knowledgeable but I fear he will want to try invasive things that I do not believe in at this point of my disease or at all. I pray that he listens to me and is understanding. I will know more when I go back next month.
From what Kimmie1 said I don't believe it was fair but from my own experiences know why her original doctor's office "felt" like it was doctor shopping even though I feel that you should be able to find the help you need without being treated so badly.

Danielle, I would not allow this doctor to force you to have an "elective surgical procedure" that you do not agree with. I too am very careful with my meds; never abusing them and know to fear them due to my age and knowing how dangerous these meds are.
I realize I have to learn to live with some pain and that NO medication is going to take it all away also. It sounds like you are the same.
I hate that they put Kimmie1 on Methadone as that is far more addictive (taking 6 months or more just to detox from it) than any other form of pain medication. It sounds as if this was done to you on purpose to make you look like an addict.
We would all withdrawal like an addict (just as I did) but due to chronic pain, we are dependent; not addicts and we shouldn't be treated like one.
I added you both as friends.
Please feel free to send me a private letter as I have made it apart of my life to help others in pain.

You need compassionate care, respect, and understanding doctors but we are not always fortunate enough to receive that and feel stuck by the doctors who feel the need to control what happens to us with no regard or care of what happens to us.
I'm sorry to hear about what many of the people here go through and I totally understand as I've been treated that way myself.

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barbles2413

27 Jan 2010

Having RSD/CRPS I would recommend a pain management doctor who is also a anesthesologist (sorry spelling) next a nuerologist. Do not go to a doctor who claims to treat chronic pain but are only physiatrist (spelling) and knows nothing about treating patients with narcotics or anti-depressants or seizure meds ect. all the meds that can help you with the pain. The other part is to accept that you will always have some pain but you will be able to manage it and not let it rule your life a feeling that you can put it in the background. I hope this helps if you want to discuss this further you can always leave me a private message Good Luck and God Bless

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lmintz66 11 Feb 2010

Melia357,
I have full body CRPS II. I am letting you know this because I know your pain. I had to see many dr.s before I found a PM that was an anesthesiologist. In fact I had to go to a university hospital to find one.
I hope by now that you have found some relief for your suffering. Please remember you are not alone. You can always talk with us here that have RSD/CRPS. (((hugs)))

melia357 12 Feb 2010

barbies2413,

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tradergir...

19 Feb 2010

Melia357 where are you from hun?, sometimes the best place to start is with your family Dr., ask him or her for a referral to a Pain Specialist OR, walk into the closest hospital and tell them what's going on, don't stop talking until someone listens to you! YOU ARE NOT CRAZY! & you are not alone, if you can't get out, get on the phone, start calling, start with the hospitals, the walk-in clinics, every Dr's office in your town, someone out there knows someone that knows someone who can help you. If you are from Ontario I know someone who can help you, if you are from the USA I wish you luck, but I don't know a thing about the health system there. I hear you, I have RSD/CRPS & I had to fight real hard to be heard and it was a Dr.'s negligence that put me in this position, but if I learned one thing from being 'disabled' nothing is impossible. Yell from the highest hill, someone somewhere will answer you, I promise :)

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RSDHurtzme

15 Apr 2010

I have had RSD for almost 11yrs now. I was blessed to be diagnosed at the 3 month mark and sent to a pain management doctor/anesthesiologist. He was great and treated me for a long time until 2004 when the main doctor decided to move the office into the hospital and stop taking any medication management patients.
I have been going to a clinic closer to my home since 2004 and only in my last appt after all these years did I finally feel I met a knowledgeable and understanding doctor who is not going to push elective procedures like the SCS or drugs that I either know I'm allergic to or had previous problems with or ones that I don't believe in taking.
In less than one year the 1st doctor found out I am allergic to almost EVERY pain medication you can think of including Morphine, Methadone, Naproxen, Fentanyl, and so many others.

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He found one long lasting narcotic that works for me and because I was only 31yrs old when I was in a MVA that caused RSD, I have remained on the same dosage for almost 9 of almost 11yrs even though many doctors before the DEA hit them hard offered me increases many times over; I refused knowing I had to learn to live with some of this pain as no medication will ever take it all away.
The doctors I've dealt with in the past 6yrs have been nothing but "legal drug writers" and I've been stuck there trying to find a good doctor but finding out none would accept my Medicare only insurance. I felt horrible and ashamed for having to go to this clinic as a real pain patient seeing drug seekers at each visit so brazen they would call people while waiting to let them know when they would have their "meds" and you could tell it was "for sale".
I was even treated as a drug seeker even with all my tests and medical records, clean urine tests, no problems and all other records saying I was a very compliant patient.
One doctor that I later found runs or owns this clinic (1 of 7 in my state) saw me one time, did no exam, told me I didn't have RSD and ripped up my scripts in front of my face. I was horrified and angry.
I told him calmly that he could do any tests known to man and exam me at least and he refused.
The other treating doctor that recently left never looked me in the eyes, asked me two questions every time; "How are you today and how is your pain today?", and sent me and my scripts out the door with no further discussion. It was all about time and money as the waiting room over flowed.
You are not crazy; it is unfortunate and you are not alone.
There are way too many of us facing troubles with doctors like this no matter where you live.
Personally if you have better insurance than Medicare, you may even want to look into an Internal Medicine doctor as they can take care of your overall health and either treat you or help you find a good pain doctor.
I am familiar with the area you live as I have a friend with RSD who lives near St Mary's.
It is a very rural area and good doctors are very hard to find there. My friend finally went to Pittsburgh and found a great doctor there and eventually was treated by a local doctor following the others protocol.
My prayers are with you as I totally understand but still can't believe doctors have the right to NOT treat us the way we should be.
It is much like the legal system; a drug seeker until proven different or guilty until proven innocent.

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jonnyrsd 26 Apr 2010

Trust RSD is not the easiest to have control it for you. I have been in pain for over 16 years and been on prescribed narcotics for it among other things. You know what its never enough to enjoy life, that is all I have to say. I am trying to find someone to go to either Canada or Mexico with so I can get the stuff I know is going to make me feel like living life, no more of this bullshit self medicating, till you all or experience the excrutiating pain of RSD than I think you all can take a back seat to this forum, it isn't funny and its very damn lonely.

PS I love life and have to keep on living, cause what is the alternative, life is better. huggs to all that suffer RSD

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rsdfairy

20 May 2011

Have you ever heard of the McGill Pain Index? if you could print this and show it to your Dr. maybe they will understand what we're going through. I know it shocked my doctor into treating my pain a little better.

What is the McGill Pain Index?

Quite simply, it is an index, put into the form of a bargraph, comparing the various types of Chronic Pain with "Causalgia". Causalgia is latin for Burning Pain and the original term for RSDS and now CRPS. While all types of Chronic Pain are not listed, they were included in the study.

As you can see, RSD is far and away the most painful form of Chronic Pain that exists today . A huge 42 on the scale! Any of you that also have other forms of Chronic Pain can now see why their RSD pain dominates their mind and body so much.

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alana21

9 Oct 2011

Yes, RSD is a REAL disease. Unfortunately, physicians who do not keep up with new information in the medical field may have never heard of it.

Look up NORD.com. This is the National Organization of Rare Disorders; they have been a lifesaver to me. You can get information on participating in pain relief studies, physicians in your area that deal with RSD, and even support groups which deal specifically with RSD.

Don't give up and good luck to you!

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popcornhe...

2 Nov 2011

After being diagnosis with CRPS II over a year ago my worker's comp stopped paying out once they found out that I was cleared for a spinal cord stimulator. When that happened I had a hard time finding a doctor that would see me and help me until today... I set up an appointment with Advanced Pain Management and in two days time I was seen and had a new plan of attack. It is the best feeling. Not only that he or shall I say Advanced Pain Management works with some network that will bill the insurance company for payment of prescriptions NOT YOU. Keep your head up as the answer's you seek are in that facility...

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