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Old 10-21-2007, 08:35 PM   #1
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LdyNY HB User
RSD - Finally starting Pain Management...

I've had RSD for about 5 years now, although two of those years it was in remission and came back Nov/05 during an accident at work.

For these past two years I have only been seeing my Orthopedic surgeon monthly, and he has been prescribing my pain meds (120 Tylenol 4s). For the first 6 months, I was doing Physical Therapy and my PT doctors would prescribe me the meds instead.

I've been trying to get to Pain Management for months and months and months now, but since I need to go through Workers Comp.. it's been hell. My Ortho finally told me last month that he will no longer see me, or prescribe my painkillers, until I go to Pain Management.

I found a Pain Management Center through my old physical therapist doctor... but that's not until November 5th. It's been three weeks since I have been out of my meds and I can barely get out of bed each day. I'm in excrutiating pain non-stop. My PT doctor said she could not prescribe me the painkillers because only a PM doctor can do it now... (I'm actually hoping that tomorrow I will call my Ortho and tell him that I FINALLY have been able to make a PM appointment, but it's not for a few weeks.. and maybe he will give me half of my usual script... I hope...).

I'm a bit nervous about starting Pain Management. Nerve blocks, SCS... these things scare me! But I will do what I must to try and get rid of this horrible pain and to hopefully start living a normal life. I have some questions for you, if you could answer I would be grateful

1. How long have you been in Pain Management? How much has it helped your pain? (100%? 80%? 50%? etc)
2. What kind of treatments do you do (If you have RSD, please answer this one.. if you have other chronic pain, let me know what you have when you tell me the treatments, if you don't mind!)
3. The only thing that has ever worked for my pain have been the Tylenol 4's (I've tried Hydrocodone, Oxycodone, Neurontin, and a bunch of other things..), do you think that my PM doctor will take this into consideration and prescribe me the same thing I've been getting for the past two years, while trying other options too of course?
4. If you were out of work, has PM helped you enough that you've been able to go back? How long did it take?

Hope you all have a pain free night/day! And nice to meet you here on the PM board... I usually frequent the RSD board most

 
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Old 10-21-2007, 09:13 PM   #2
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HappyFlower HB User
Re: RSD - Finally starting Pain Management...

Hi! Forgive me, but what is RSD? I am not real good with medical stuff.

My Ortho also gave me my scripts (Lortab 10) for a year or so. He gently pushed me toward Pain Care, and I finally decided to give it a try. Don't be scared of a Pain Specialist. It is not a bad thing. I was uncertain at first...and I admit I was very worried about the "stigma" of going to a Pain Doctor. Society paints us Pain Care Patients as a bunch of hopeless junkies! However...I was so surprised to find many people my age (33), who aren't raging addicts...who were just in my shoes-doing what they had to do to find relief. My doctor is wonderful. She is so very caring! Once, after my friend had "scolded" me for taking Lortab nightly which put me in tears, my doctor pulled out my MRI results and read them to me. She then looked at me and said ANYBODY who had a back like mine would be in pain...that I have every reason in the world to take a pill from time to time. It is just such a wonderful thing to be understood and encouraged. Finally breaking down and giving Pain Care a try was the smartest thing I have done in a long time.

Now for your questions:

1. I have been in pain management for a few months. My pain control is 80% improved from the day I started...not to say the pain is not there...it is just controlled now.

2. I have a herniated disc with nerve compression. I am not sure what the actual term is, but I have steriod injections in my back every three months which help SO MUCH.

3. I take Ultram ER and Lortab 7.5. I take both on an as needed basis. I do think the doctor will take this into consideration. But, be willing to try new medications. Ortho's aren't trained like the Pain Specialists are trained. Your new doctor might actually come up with something that works better.

4. I am a stay at home mom, but I consider this a job !! A week after the first injection, I was able to go about my day and not be bothered by the pain too much. The Ultram also helped...my Ortho doc only gave me Lortab, which I won't take while I am driving the kids around. So, pain was an issue during the day. However, the Ultram can be taken during the day.

I am SO, SO glad I decided to do Pain Care. Best of luck and I am sure you will be glad as well.

Last edited by HappyFlower; 10-21-2007 at 10:09 PM.

 
Old 10-21-2007, 09:36 PM   #3
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conductor HB User
Re: RSD - Finally starting Pain Management...

While my reply is one of the first, I'm sure you will receive others that are more helpful and specific. However, I will try to answer your questions in the best manner possible!

Even though I completely understand that most doctors don't like Rx'ing opiates, I ALWAYS find it irritating, lacking in compassion/understanding, and passing-the-buck--ish when doctors won't prescribe during the Pain Management process. Furthermore, you've tried stronger medications but settled on the less-potent Tylenol 4. So, you don't come across as someone who is out there to simply obtain drugs.

I don't live in a large area--just a moderately populated one. We have 6...yes, six...Pain Management Clinics. Three of them closed within 4 or 5 months of opening. My point is that it isn't particularly easy to "just get" a Pain Management appointment. I think that these various physicians you have would help you out with your prescription difficulties. YET AGAIN, I am so glad my Internal Medicine Physician (a D.O.) Rx's my Pain Management medication since my PM doctor packed up and left the area!!

BY THE WAY, YOUR PT DOCTOR IS FULL OF "IT" WHEN SHE IMPLIED THAT "ONLY A PM DOCTOR CAN DO IT NOW". Even if you're under some sort of specific contract that addresses prescription pain medications, it is not illegal for various doctors to Rx pain medicine to you. HOWEVER, if you accept opiate prescriptions (and fill them at a pharmacy) from several doctors while not informing them of each others' existence--that is another story.

1. I started with a PM doctor in 1996--an Anesthesiologist/Pain Management Internal Medicine physician. He was a D.O. (not an M.D.)--if that matters to you. While my pain was eventually reduced by 70%, a 50% drop is considered VERY SUCCESSFUL (and often is the goal). My suggestion, though, is to be prepared for smaller amounts of relief--and be thankful for whatever you can get!

2. & 3. I have Systemic Lupus and the Lupus Anticoagulant. In the past, I utilized a number of stretching and other PT-type modalities, as well as a variety of TENS-type units. However, the opiate medications have worked more effectively than anything. I use the Sandoz generic form of the fentanyl patch (75 mcg), the generic form of Actiq (fentanyl citrate lozenge 800 mcg), and Roxane's generic of Dilaudid 8 mg. Another pain medication I use that is NOT a technical opiate is Fioricet (butalbital, caffeine, and acetaminophen). Butalbital is a barbiturate. IT WOULD BE A PM's SERIOUS DOWNFALL to not consider everything that has worked for you. I'm not saying the doc will Rx what you want/need, but it seems ridiculous to me to discontinue utilizing a medication or any other modality that works!

4. I have not been able to return to work. I was a full-time teacher. However, I am able to work--on an extremely limited basis--as a Church Musician. My schooling involves a Bachelor's in Music Education (Vocal and Instrumental) and a Master's in Choral Conducting. The Lupus became way too much for me to finish my Law Degree--something that will always cause me sorrow! Nonetheless, I am thankful I can offer something of a Musical nature when it is possible.

we welcome you to our board! Keep checking on this thread because I'm just positive that others will have a great deal to offer your situation!!

Take care,
Jon (Conductor)

Last edited by Administrator; 03-25-2011 at 10:39 PM.

 
Old 10-21-2007, 11:47 PM   #4
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LdyNY HB User
Re: RSD - Finally starting Pain Management...

Thank you so much for your replies so far, I appreciate the kind words and helpful information!

RSD is Reflex Sympathetic Dystrophy (Also known as CRPS/Complex Regional Pain Syndrome).. It's complicated for my own brain to put into words, so I will take an excerpt from an MD website article:

Complex Regional Pain Syndrome (CRPS) is a chronic progressive disease characterized by severe pain, swelling and changes in the skin


It can be brought on by trauma to an area, which is what happened to me... twice..

I'll explain what happened to me actually. In December 2002 during gym class in my senior year of high school I was injured during a volleyball game. My friend was beside me, and we both went to spike the ball at the same time, however, he pushed me aside while I was jumping midair. I lost my balance and my left foot 'rolled' onto its side, while my right foot came down with all of my weight onto the side of my left foot... breaking my 2nd 3rd and 4th metatarsals.

I went to the ER, had x-rays and was told nothing was broken. I spent the next three days at home, unable to walk at all.. my foot was DEFINITELY broken. On the third day I followed-up with an Orthopedist who looked at the x-rays I had gotten in the ER, and told me he didn't agree with their diagnosis. He took more x-rays and found the broken bones, then put my foot in a cast.

After just a week and a half, problems were arising and he took my cast off. The nerve damage was starting... He put a walking cast on, for some reason, even though I told him I could NOT put pressure on my foot. He didn't believe me, or something... Suffice to say, I did not see him anymore, I found another doctor.

Two months went by and I was still in extreme pain... burning, tingling, aching... every kind of pain I can think of. I went to a Pain Management doctor and he told me he was sure I had RSD and that I should start nerve blocks immediatley. I freaked out (I have a bad phobia of invasive procedures.. and hospitals..) and my father brought me back home so we could think about this more. I ended up not going back to Pain Management...

I was in pain for many more months, but it slowly started to go into remission. By 2005 I was able to walk fine, I still had flare-ups of extreme pain sometimes, especially at night, but I was okay. I got a job doing retail, I was on my feet all day, and the RSD did not affect my job whatsoever.

After only 3 months, I was enjoying my job immensely (My co-workers, my work, my store.. everything!) and I was promoted. Another three months later, I was promoted and given another raise. I was so happy with my job, and the great benefits the store had.

Until....

November 21, 2005... I was helping a customer with their purchases up at the contractors desk (I worked in a large hardware store). All of a sudden I feel someone come up beside me and then the most horrible pain I had ever experienced. It felt as if someone had just run my foot over with a truck.

It was one of my co-workers. She was trying to jokingly get my attention by stomping down on my foot (The one with RSD)... She also had on a pair of steel-toed boots while I had on a pair of cheap sneakers. I blacked out, fell forward against the counter and started crying. The only words I could get out was "You...... stupid....... why..... idiot....".

I then hobbled into my supervisors office and took my shoe and sock off. To my surprise, my foot had turned purple/black/blue and was swollen to twice its size. I also couldn't move it, in ANY direction. I called my father and he came to see me. Once he saw my foot, he told me he was taking me to the ER. I filled out an accident report and left for the ER.

They found no broken bones, just tissue damage and a giant contusion. I then followed-up at a Physical Therapy place by me. After seeing no progress for weeks (I even tried to go back to work twice, but I couldn't do it)... the two doctors there both agreed that I may have RSD. They sent me for MRI's, saw no damage there and definitely decided it had to be RSD.

That's when I started seeing an Orthopedist, who after a few months also agreed with the RSD diagnosis.

PT was slowly helping. After 6 months of it (I think the thing they were using was like the TENS unit with a warm compress, along with the Tylenol 4) my pain went from a 10 to an 8.5. Right after the PT my pain was down to a 5.

Unfortunatley, at this time Workers Comp decided that they didn't want to cover my PT anymore because it 'wasn't working' and 'there was nothing wrong with me'. That was June 2006... Since then I've gotten no treatment, no pay, no anything. I've been at court hearings over and over... The judge actually finally made a decision in my favor last month.. but WC appealed and now we have to wait months to a year for another decision...

That's where I am right now. That's the story of my RSD, and what has happened since. I know it's long... but hopefully some of you will read it anyway

Also.. My PT doctor referred me to the Pain Management Clinic and a certain doctor. However, when I called to make an appointment.. the earliest date for THAT doctor was November 5th... But the woman said I could make an appointment on the 1st with a different one... so I did.

Now I'm thinking that maybe I should just change it to the 5th and stick with the doctor I was referred to in the first place. Would that be a better idea?

It's 3AM and I can't sleep... the pain in my foot just started to kick in more (It always does at night)... I even took a Percocet, and it does NOTHING. By the way, the Percocet is for the two wisdom teeth I had pulled this week (Of course one of the roots broke off one of them in my jaw, so yeah... that was an incredibly painful process, hence the Percocet).

It's just weird that Percocet... Vicodin... do not work for my foot pain. Just the Tylenol 4s do. I bet things like Morpheine wouldn't even help! I feel like Codeine is the only thing that helps this pain in my foot! The ironic thing though? The Tylenol 4's didn't help with my oral surgery, only the Vicodin and Percocet does. And the Vicodin and Percocet doesn't work with my foot pain, only my oral surgery pain. Strange, isn't it?

Last edited by LdyNY; 10-21-2007 at 11:49 PM. Reason: Spelling :)

 
Old 10-22-2007, 07:56 AM   #5
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butrfligirl28 HB Userbutrfligirl28 HB User
Re: RSD - Finally starting Pain Management...

I wanted to respond to the question about work. I have always worked, and had been a few years into my career when a surgery left me in such pain, I was useless at work and at home. I was in my 20's, and could not work at all. By the time I went to a pain specialist, I had been out of work for a year. Within a few months, I could work part-time. It was hard, and I eventually had to quit due to physical aspects of the job.

A few months later I tried again working part-time. I did better, but longed for my career. After one year in pain management, I finally got to the point where I felt I could give it a shot. I have now been working in my field, full-time, for one year. I cannot express what that has done for me. It was my main goal in PM, but scared that it would never happen. Now I am productive, and my fiancee and I started looking at homes yesterday. We can afford to build one, now that I am working.

Long story short, if working is important to you too, discuss this goal with your doctor. It is not easy. I still have days where I hurt very badly, but overall it is so worth it. Good luck to you, and let us know what happens!

Amanda

 
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