RSD / CRPS I or CRPS II

I see a huge gap in actual postings here. May I ask for a who's who posting with a little information about how you came to have RSD, the treatment you have received and the treatment you are currently receiving?
My name is LaShonna. I have RSD/CRPS in my left arm, has spread to my entire arm, left back, chest, neck and is mirroring in my right arm. I have had RSD/CRPS for 20 months. In was as a result of a car accident in 07/00. I was officially diagnosed in 10/01 and currently am on 120 mg of Oxycontin, 4 to 6 capsules of 5mg Oxycodone for breakthrough pain. 300 mg of Effexor, 100mg of wellbutrin, 600 mg of Zonegran, Baclefen as needed.
I have had 2 EMG's, 2 MRI's, prior to diagnosis I had sought chiropractic care on 2 occasions.
I have had 4 cervical epiderals, 22 Stellate Ganglion Blocks. None offered more than a few hour of relief.
I have a list of websites with lots of information about RSD. Blessing to you all

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[This message has been edited by moderator3 (edited 04-03-2002).]

Hi, I also was diagnosed with RSD. It was officially diagnosed by a pain management doctor after months of obvious symptoms that the orthopedic doctor chose to ignore. It started in my right foot/ankle and has since spread to my left foot, right calf, right hand/arm and shoulder, and low and mid-back. I am currently taking Ultracet, Norco, Baclofen, Elavil and Lidocaine patches. I am taking pills all day and all night with no relief. Sleep is non-existent for days at a time; I finally crash for 13-14 hours every 4-5 days. I cannot lie down because of severe back spasms; also, I cannot put any pressure at all on my right arm. It is very hot here and just having the fan on to circulate the air is like torture on me. I used to be a workaholic; I worked very hard and was very good at my job in a hospital. Now I have to sit home and try and get through the days and nights without having serious thoughts of ending this whole mess. I have always been a very very strong individual but this has pushed me way over the edge. I have had a series of 6 lumbar epidural nerve blocks, which only stopped the coldness in my right foot. They did nothing to stop the pain. My doctor changed my meds every week to try and find some that would give me some relief and that I could tolerate, as I have some severe drug allergies. My ex-husband had a back injury and got addicted to pain medicines and it turned him into a monster-so I informed my pain management doctor from the start that I didn't want the "big guns" as far as pain meds were concered. However, I have not had a working vehicle in over a month and cannot get to my appointments(he is 3 hours' drive from here). But when I do get to get a car and resume treatments, I am asking for whatever meds he will give me to make this STOP. I used to say that "I have RSD, it doesn't have me." Well, now I am of the conclusion that RSD does have me. I am sick of not being able to do anything anymore. I want my life back. The other night, I had dinner with my boyfriend. I had loaded up on pain meds and muscle relaxers so I could have dinner in a minimal of pain; yet when I tried to cut my steak, I kept dropping the knife. My arm was in spasm and I had no control over it; I had to ask him to cut my meat like a little child. Talk about embarrassing! I was totally mortified. If this is the best quality of life that I can have, I don't think I want it.

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Kim

I also have rsd in my left jaw, neck, shoulder, breast, back and now is moving down to knee and ankle. I began having pain 4 years ago and started having seizures 3 years ago. The doctors were stuck on finding a reason for my seizures so would not listen to me about my pain and now it's gotten really bad. I'm not sure what trauma caused the rsd. I've seen so many different doctors from neurologists to psychologists. I finally was diagnosed (tentatively) a few months ago with rsd but we are still searching for another possibility as I have non-epileptic seizures along with the pain. I'm able to get through most days with oxycontin, vicodin, neurontin and elavil. The neurontin has helped tremendously. It puts me to sleep too so I am able to get a great night's sleep. I receive social security and medicare but no other insurance so paying for all my meds plus $250 per month for the 60mg oxy a day is breaking us. I have a wonderful, supportive husband and 2 precious daughters. The Lord and my family is the only thing that keeps me going. God bless to all of you.
K

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Hi, I read your post, and have to tell you: you need to get a pain management doctor, one who specializes in PAIN. He/She will work as part of your care-giver team to ensure that you are getting the treatment you need to have a reasonable quality of life.

I finally have a good doctor, and he has just taken me off all meds and started me on 2 new ones-Clonazepam for the nerve pain and Percocet 10/325 for the other severe pain. There was only one pharmacy in this entire town that would order the Percocet for me, as it is a brand-new dose(double the previous strength), and according to the pharmacist, they are nervous about filling an RX for a schedule II drug from an out-of-town doctor. (Mine is 333 miles away). He said drug addicts would kill for that bottle of pills-which is why normal, non-addicted people who suffer from unrelenting pain are often not able to get the meds they need.

Anyways, I hope that you will look into getting a pain management doctor. He/she can also inform you of some of the drug manufacturer's websites so that you may be able to get some of your meds very cheaply or free. A lot of the big drug companies do pro bono (free) on some necessary drugs. Unfortunately, they won't on the schedule II narcotics, as they are government regulated.

I hope this information helps. Keep your chin up(or down, whichever way doesn't hurt!) LOL.

I will keep you in my prayers. Kim

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Kim

Hi... I was I guess unofficially diagnosed with RSD this afternoon by my podiatrist. I underwent 2 surgeries. 1 in Sept that got rid of a bunion, 2 neuromas, an unknown mass and a shattered bone.. the 2nd one was to remove the sesmoid (sp) bone. This was all done to my right foot. I experienced extreme pain after the first surgery and it was decided that I had what is called drop foot. But extreme burning and tingling didn't go away and we finally decided that we shouldn't wait to do the other surgery and I went ahead with it. Since that time I am still experiencing extreme pain but not at all times, and the constant tingling in my foot when I try and do anything. It swells if I'm even try and do housework... I can't drive anymore because of the pain, and at times I can't sleep.

The doctor has asked me to start swimming in my pool again and to also start walking 5 minutes a day to start every morning. So we shall see what happens. I truely hope he is wrong in the diagnosis, as I lead a normally very active life and can't see staying this way forever.


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Of all the things I've lost I miss my mind the most... if you find it, please return it to me.

Hi, I saw your post and you are one of the very few lucky ones who may have been diagnosed early enough to do something about it. The doctor is right; be as active as you can without causing more pain. The worst thing to do is to let the RSD immobilize you; then it will be difficult, if not impossible, to get it into remission and keep it from spreading to other parts of your body. Believe me, do anything you can to prevent THAT from happening. It may happen anyways, but at least you may have a jump-start on it with an early diagnosis. My pain management doctor said that most of his patients aren't correctly diagnosed until 2-3 years after onset of symptoms-and by then, most of the damage is irreversable and you spend the rest of your life living on potent narcotics just to get through the day. I know what I am talking about. Take care. Best wishes. Kim

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Kim

There really is no single "best" treatment for RSD. What medication one finds good, may not help others. There is no set medication for RSD, say as there is one set antibiotic for a bacteria.

Personally I find Zanaflex to be the best for spasms and cramps. I've tried everything from Valium to Baclofen, and I mean everything. Zanaflex I find far superior.

Methadone for pain along with OxyFast for breakthrough. Neurontin for the burning. Lactulose for the bowels.

Does anyone have experience with Actiq? It's the Fentanyl Lollipop? My doctor just prescribed it when I was there Friday and my pharmacy is ordering it to come in this week. Supposed to be very good for breakthrough pain.

Thanks for the info Gabriel. One question, I am experiencing lots of problems with my memory and focus. As well the pain is taking it's toll on my body. Is there anything at all to help memory?
LaShonna

Ritalin "may" help as it does with ADD people. No guarantee. But many doctors do not like to prescribe it.

Hi. My name is Shawnee. I am 30 y/o and was diagnosed with RSD the end of last year. In March of 2001, I was hospitalized for Crohn's disease and a nurse gave me an injection into an iV that wans't to be accessed--the med was phenergan, I immediately swelled up and the pain was agonizing. all said it would get better and "wait and see". well, it didn;t get better...just worse. I have had stellate ganglion blocks--numerous meds. Now, I only take loratab for pain when needed--nothing else works well so, I don't take anything.
The morning is worse time for me. the swelling is so bad. I learned some things from physical therapy (I had about 8 sessions) it did help a bit.
i just pray everyday for strength to get me through and so far, I'm still here.

Take care-
Shawnee

Hi..I originally had a tennis elbow from a work injury.

I recieved a cortisone injection and that seemed to kick my RSD into gear. I've had it for 7 years now, and its like a dog gnawing on my arm and hand.

I've lost most of the use of them and am on permanent partial disability. Through it all I've worked part time off and on, and am currently not working again.

About the only thing that works for me is a combination of oxycontin and biofeedback therapy. I have a seriously cranky stomach, and elevated liver enzymes, so I find many drugs cause me severe trouble.

Hello!

My name is Dawn I am 33 years old have 2 children and have been dx with RSD since Aug. 2000, Although the injury occured May 18, 2000 my ortho. doctor did not have a clue. After 3 months of him trying this and testing that he finally sent me to a Pain Management doc. My ortho. doc did 3 MRI's, a bone scan, ultra sound of lower right leg to look for blood clot to explain severe swelling and blue/purple color of skin. He put me on crutches and no weight bearing for the first month, and PT that included heat and ice treatment. So by the time he sent me to another doctor he had made sure to do everything to me to spread this stupid stuff. And had no idea that everything he was doing to me was wrong. Oh yea and the cortizone shot he gave me in my right hip (greater trocantor area) added to the rapid spread. By the time he sent me to the pain doctor the disease was in both legs from my toes to the top of my pelvis. I have been on so many different meds for the last two years that I can't remember all of them. Right now I take oxycontin, percocet (for break thru pain about 4-6 a day) paxil, baclofen, elavil, gabatrill. I had 3 nerve blocks and was admitted to the hospital for 6 days with a spinal cath, inserted to paralize me from the waiste down. So that they could do intense PT to get rid of some of the severe swelling in both legs. My pain level is from 6 to 10 everyday. Since december my arms and hands have been swelling and have started with the electric shock type pain, and my lower back has gotton so bad that I can not sit up for to long or move around very much. Actually I have trouble sitting, standing, walking, and laying down. My vision is blurred and I have been getting bad headaches that seem to last for days. My days are filled with changing positions and catching a little sleep here and there. I don't sleep much due to the pain. Recently I have started having SEVERE leg cramps in my calfs, the kind that I wake up screaming out in pain.
At my first appt. with the pain doctor she walked in took one look at my legs and me and said she knew exactly what I had, "RSD". Part of me was so relieved to have someone who belived me and tried to understand my desperate need for help. Atleast I knew I wasn't crazy. That day seems to have been the first day of this awful nightmare I am living as a life.
Before this disease took over my life I too was very active. I am a single mother with 2 kids. I worked as a Paramedic/Fire Fighter full time during the day and was paid to standy duty several nights a week for the volunteer rescue squad. I also painted houses on my off days and evenings. I coached my kids soccer team and helped coach my daughters softball team. Not to mention I also had a social life from time to time. My injury happened on a fire scene. Since my injury I have lost my job, my certifications, can't help with my kids sports, can't play or ride bikes with my kids and have absolutly no strenght or desire to be involved with anyone.
I assume it is normal for all of us to have bad days and wish to die if that is the only way to stop the pain. By the grace of god maybe someday someone will find a cure for this condition we all know as our life of hell. To everyone that suffers from this horriable disease I will pray for all and continue to dream about the day that we can wake up and not feel like we have been banned to hell on earth.


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My prayers are with you. The more people we educate about RSD the more chances that just one of them may find a way to help us all.

Dawn, I completely understand everything you are going through. I want you to know that you are not alone and if you need to talk I am here.
LaShonna

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[This message has been edited by moderator3 (edited 07-17-2002).]