View Single Post
Old 12-06-2015, 11:36 PM
Neurochic Neurochic is offline
Member
 
Join Date: Sep 2011
Posts: 246
10 yr Member
Neurochic Neurochic is offline
Member
 
Join Date: Sep 2011
Posts: 246
10 yr Member
Default

Quote:
Originally Posted by guitarguy View Post
Hello,

I have been suffering with CRPS/RSD since 2007. I am 45. I tried everything and the only thing that helped was Nucynta as it took all the pain away. However, I had some side effects and my family didn't like me to be taking pain meds so I stopped months ago.

I started going natural with Kratom which helped great but my tolerance build quickly and it doesn't work well now.

I have nothing for pain now. I even tried to work out today but walking is difficult as it feels like my feet are broken and burning.
Trying to do cardio my feet get icy numb and painful. I can't bend my wrist or elbow much and I used to love weightlifting but without pain relief it is agonizing to workout.

My left arm and hand turns purple and ice cold and I can't even touch it without horrific pain.

I still see a pain doctor and contemplating going back to nucynta long acting in order to have a life again.

I want to see specialist in RSD/CRPS. Does anyone know of any good doctor's in or near Philadelphia, PA or the surrounding suburbs?
You have had CRPS for 8 years now. The harsh reality is that you are likely to have it for the rest of your life to a greater or lesser extent. You need to think about your pain control and medication as something you are going to need for the rest of your life, not just for a week or a few months.

You need to set aside your family's objections to the medication you decide to take. To be honest, its got nothing to do with them. You are an adult and you are the one in agonising pain. You are the one who is suffering, not them. I am certain that none of them has experienced severe, chronic pain so they only understand the mindset of someone who takes medication for a very short time to deal with acute pain like a headache and then stops taking it. You are not in that kind of situation. Your family will not be able to understand the amount of pan you are in without taking this medication. You would't tell someone who was diabetic to take insulin for a few weeks or months and them encourage them to stop taking it, would you? The kind of chronic pain you are having with you CRPS is much the same - you will need to manage that pain, most likely for the rest of your life.

One of the important things to consider with CRPS is that uncontrolled pain tends to become worse over time. It is not like having a headache or a broken arm where you can just suffer the pain and eventually it will go away without causing you any problems. It is really important to try and control as much of the pain as possible to minimise the pain levels that you could suffer from in future. Your family probably don't understand this very important aspect of chronic pain management. CRPS is also a much more complex medical condition and pain is only one element of the problems it can cause. However, if you can control your pain, it will allow you to keep more active and to use the affected part(s) of your body much more - this minimises lots of the other problems that CRPS can then cause you like muscle atrophy, circulation problems, movement problems, osteoporosis and even additional pain that is actually caused by not using the particular body part.

You need to try and explain to your family but if they don't understand then its important to ignore their objections and do what is best for you. Most people with CRPS would be over the moon if they could find a single medication that would have the amazing pain relieving effect that you have had from Nucynta. In the grand scheme of things, it is not a particularly powerful opiod - it sits somewhere between tramadol and morphine.

Our cultures have demonised this kind of medication because it is abused by some people but your family need to get over their misunderstandings and misplaced concerns. These drugs all have absolutely valid medical uses and are invaluable for chronic pain patients if they work for them and are used properly. I use fentanyl as one of several drugs to manage my CRPS pain. It is 80-100 times stronger than morphine and it is also a drug that is abused by people. That doesn't mean that I shouldn't use it for legitimate and necessary pain management purposes. It can be extremely difficult to stop taking it because your body becomes physically dependent on the drug - I am not the least bit concerned about that because I fully expect that I will have to take it for the rest of my life. Proper management also helps to prevent or stops your body developing a tolerance to this kind of medication so that it can continue to remain effective without taking bigger and bigger amounts.

Please find a good pain management doctor as soon as you can and discuss your medication options. If you can get your CRPS pain under such excellent control with minimal or at least bearable side effects using Nucynta then you are very, very fortunate and your family should actually be pleased that you are taking it! As Littlepaw says, there may be other medications it is worth you trying but please, please don't be guided by what your family think. Help educate them but if they don't 'get it' or still 'don't like' you taking pain medication then you need to ignore them for the sake of your health.
Neurochic is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (12-07-2015), mama mac (12-14-2015), PurpleFoot721 (12-10-2015), RSD ME (12-08-2015)