RSD (Reflex Sympathetic Dystrophy) Med Question?

Question

Just wondering what other people with RSD are on med wise?

I am currently on OxyContin (just for pain before they diagnosed my with RSD) and Ambien for sleeping b/c of the pain by my primary physician.

My orthopeadic onocologist (who diagnosed me with RSD) put me on Elavil today. He said it was for nerve blocking? But anywhere on the internet says it is an antidepressant.

My ortho wants me to go completely off of OxyContin but I can't imagine what kind of pain I'll be in if I dont have that pain med. And he is completely against pain meds in general. Considering I'm still in a massive amount of pain. And that I have to function in everyday life.

I'm just looking for some advice from someone who has RSD. I'm new to this....

Answer 1

The current term for RSD is CRPS for Complex Regional Pain Syndrome. Though many people not in neurology or pain medicine still refer to it by it's old name RSD.

CRPS is a neuropathic disorder and the pain would seem to be inconsistent with the level of injury. This is usually true as most patients with CRPS had what would be considered to be a reasonably minor or limited injury.

Though all the mechanisms are not clear, the pain and physical responses seem to be primarily an abnormality in nerve transmission.

Oxycontin is a great pain medicine and may give you some relief as it dulls your perception of pain. However, oxycodone is better suited to treating nocioceptive or injury respose pain, and less effective at controlling neuropathic or nerve related pain.

The primary treatment of CRPS is neuromodulating medications. Two of the main medications used for this are Gabapentin (Neurontin) and pregabalin (Lyrica). Neurontin is traditionally an anti-seizure medication, but has been found to be very effective in changing the transmission of nerve impulses by neurotransmitting substances in the body. There are several other seizure drugs which can be used in this manner. Opiate pain meds are used to augment the neuromodulating drugs as needed, but are not considered a method to treat the pain, but instead control or hide the pain.

Physical therapy is also key to this condition.

Amitriptyline or Elavil is primarily an antidepressant medication but it works by blocking certain neurotransmitting substances. While my success with this medication has been more limited with CRPS, many CRPS patients need both a nerve blocking and antidepressant medication to control the issues related to the condition. Your ortho has probably had better success with this med in his patients than I have but that is a common occurence and why different physicians will give you different meds for the same condition.

It is best to decrease and if possible eliminate the Oxycontin from your treatment, as you will become physiologically dependent on the medication and as your body habituates to the med you will need stronger and stronger doses to achieve the same effect.

See this site

www.rsds.org they have a lot of good information on the condition.

If the condition continues despite PT and meds you may need referral to a pain medicine specialist. If you have questions write me at [e-mail]. My nephew has recurrent problems with CRPS but we get him under control by treating the condition quickly and not allowing it to become a chronic issue. I would also recommend you get training in biofeedback as this requires no medications and can give great assistance in managing pain conditions.

Answer 2

elavil is an antidepressant but is used in treatment of rsd, it helps you sleep. I couldn't take it because it caused nightmares. Oxy is a good pain med, but as my doctor told me: when you have rsd you will get worse and when you start off on such a potent pain pill, later when your rsd worsens your options are limited. I have rsd and am going on 5 years. I would suggest a neurologist, they deal with the nerves and rsd is a screw up of your sympathetic nerves. They will try numerous meds, have you had any sympathetic blocks done yet? trazadone is good for nighttime and safer than most meds. e-mail me at [e-mail] if you have any questions or need someone to talk with, this is a life altering problem. you must stay as positive as possible as depression can overwhelm you if you let it.
You need pain meds and if this doctor won't give you any find another. after my numerous tests and diagnosis my md tok over my care, now I just call to get my medicine.
hugs to you charm

Answer 3

I am sorry to hear about your friend. I have two cousins who have been diagnosed as having RSD, one has since passed away (The disease is not hereditary, just a coincidence that two family members have it). From my understanding RSD doesn't cause mental illness, but it does cause such unbearable pain. To help cope with the pain, both cousins have taken some very strong medications that definitely changed their behavior and their mental stability, especially the cousin who passed away. In just a few years he went from being a vibrant happy family man to spending days just sitting in his chair. He would sleep constantly and when woken from his medicated induced sleep he would be totally disoriented. It is hard to see someone you care about go through such mental and physical changes. Unfortunately there is no cure for RSD and many treatments offered in the past did not have any lasting results and often made things worse. But today more doctors are familiar with RSD and more treatments are being offered with better results. I wish you and your friend the best and I pray that a cure is on the horizon.

Answer 4

I have been on several meds, but I found that none of the meds (especially the pain meds) really helped much so the only medication I currently take is Cymbalta, but I have been on Lyrica, Neurontin, Ambein, Oxycontin, Loratab, amnitripytaline (sp?), Methadone, and some others that I can't remember (too many over the past two years). Have you been referred to a pain management specialist? That is probably going to be your best resource to getting the best treatment. Good luck! Feel free to e-mail me with any questions.