I have had MS for about 5 years now and my biggest issue or symptom is pain. I have had pain now for more than 2 years and it had turned severe for about the last 2 years. In this time it has not been successfully managed.
I have also seen a pain specialist and well most options have run out with medications. He told me that himself last March. Also I want to mention that I am really not interested in adding medications since I have noticed how much life they take out of me, this includes my ability to think – or my intellect. Not to mention I know that I seem hyper sensitive to medications.
I have been on morphine to help manage my pain for about 2 years now. I also receive lidocaine infusions weekly.
More recently, my neurologist believes I should get off the morphine. He is concerned on how much I am on. I am in agreement with this. Actually I am excited to get off the morphine. I really don’t want to be on it anymore. Never did, but I guess it is a tough call to make no matter what.
The morphine isn’t successfully managing my pain and hasn’t coupled with any other medications either.
My neurologist also has the theory that I maybe on too much morphine and that is only increasing my pain. I guess it has something to do with how morphine activates the nerve receptors and that in turn makes these receptors open to feel pain which otherwise they may not have.
So, 7 weeks ago I took my first step down of morphine, and last Monday I took the second-step down. I am to continue to reduce the dosage the same each 2 weeks until I am completely off the morphine sulfate. Then he will convert my Fentanyal patch to the comparable amount of morphine pills until I am completely off morphine. I figure this maybe sometime in June that this process in completed.
My question is for anyone who has or known anyone who has MS and had to get off morphine. I would like to hear how they felt or how it changed them if at all, physically & emotionally while they were in the process of getting off of it. I know morphine is an animal to get off of for anyone, but I know those of us with MS would only likely have additional issues to deal with.
I have noticed changes in both physical and emotional changes in myself. I feel I keep going downhill physically, mentally, & emotionally.
I am trying to get back into my exercise again; it has been difficult for me to get back on track with that these last several weeks too. Of course, nowhere near what I was doing in September prior to when I began going downhill. That seems to have been one thing that has managed my symptoms so well, even helped with the pain. It definitely gave my energy. I had boundless energy – which as everyone with MS knows, fatigue is a hard thing to manage. So this is a way that really did work well for me. I hoped or am hoping it will also help get me mentally and emotionally back to me again.
I find this all so difficult to sort through (What is MS, what is morphine withdrawal, and what is just been “too much”.) I have fallen after bad cycles or attacks many times and emotionally I have never been like this. It feels so crippling and I feel like it is changing everything about who I am.
My neurologist has blamed all my emotional issues on simply how hard it has been for me, especially these last couple of years. But I feel as though he has forgotten how I was just prior to these recent weeks.
I had such a good attitude I was complimented on it all the time. (an attitude that took a long time for me to build) I was in the process of opening two Companies and I kept up with my athletics at the same time. I was finally physically in good enough shape (since beginning sudden improvements in April) that I could have a bit of a life again. I certainly still had many limitations but I had a good outlook and a plan in place with the business knowing that I had this disease I had to be realistic as to how my businesses would run if I was “taken down” by the MS for a period of time.
I am saying this only so it is understood although my attitude was good I was also realistic. I wasn’t in denial or anything like that. Also, how could I have had any real emotional issues and done all that I was doing.
My neurologist was so pleased with how I was doing all the way around a few months ago he thought I should become an advocate. He remarked specifically on all I was doing despite the symptoms that I had to live with everyday. He said I was a success story adding people really need to know what is possible. However, with some of the severe pain I was still trying to manage, and simply the fact I knew I was not capable of even looking for a job on a part-time basis (since the pain was still too unpredictable and that made it difficult for me to know what I could do exactly when) it was hard for me to see me the way that he was.
So that really has me miffed as to how he now believes my recent drastic emotional changes are solely due to how hard it has been for me, especially these last 2 years.
This is so unlike me I even asked him if the MS could have affected my emotions and behavior after that last attack, cycle, or whatever it was, I had gone through. He believes that it is not.
I know this was a very long entry. But I would appreciate it if anyone had any knowledge of how coming off morphine affected a person with MS physically and emotionally. Frankly, this has me both scared and confused. Plus a bit down.
I had also made a posting to the addiction forum of this site hoping to gain some insight on the morphine withdrawal side (which also posted in the pain management forum). That posting was slightly different since I solely addressed what could be morphine related. Whereas this posting I am covering the MS side as well.
I am trying so hard to be or feel like “me” again.