Multiple Sclerosis Community
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1157044 tn?1318303724

Don't know what to think

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.
13 Responses
Avatar universal
My, you have had to endure lot!  I'm sorry that you are having to go through all of this.  Unfortunately, I don't know anything about getting off of Morphine but wanted to let you know I'll be thinking of you.  Recently, I went to an MS meeting and the Dr. spoke of Marijuana pills (Marinol) to help manage pain.  Has your Dr. mentioned that?  She said dosages would not be of such that people se to get high.  The dosages would be more managed and would not be considered to be addictive.  
1157044 tn?1318303724
Thank you for your posting, and for your understanding.

Marinol was one of the many drugs that have been on & it did nothing to ease my pain.  I don't know now what my dosages were; I know that I didn't get high from it.   In fact, the thought the doctor that had prescribed it for me said it wouldn't do that.  He knew of my concerns of that in general.  I refused to continue taking Oxycodone when that was initially prescribed to me because it gave me a "high" feeling.

I have heard that marijuana (smoking it) does manage pain well. Of course to use medicinally you have to live in a state where it is legalized for that purpose. (by prescription).   I know in my state it isn't legal.  I have heard from those that have used it - where it was legalized - said it only took such a small amount that it didn't get them high.  I guess especially since you are using it to counterbalance pain.
But that is just what I have heard.   I thought I would share it.

Avatar universal
D ear M&M--

Welcome to our MS forum. You'll find a great group of friends here, who are both supportive and knowledgeable.

I admire your resolve about getting off the narcotics and am rooting for you to succeed. Please keep us updated on your progress, and hang in there.

Again welcome,
667078 tn?1316004535
I have a lot of pain. I find it is worse if I do not exercise. The thing is  for me to start out slow. I have been off exercise lately so today I walked a half hour. I have to do a lot of stretching. Every few minutes I  flap my arms like a chicken. I  try to stay ahead of the pain. If I take a small amount of Aleve early it works better than if the pain is bad.

I have a therapist who also found I was really good at hypnosis. I use it to fall asleep and for pain management. I also have to look at my emotions. Anger makes me tense causing more pain.

My doctor has me building muscles to support my weak areas.  If one are in the body is weak other places tense to compensate. I have to keep those other places from tensing. For example my left side is weak so I put more pressure on my right hip to compensate. I have to stop myself when I feel my hip tensing.

620048 tn?1358021835
Hi, I have not taken morphine but before I was diagnosed I had a lot of pain, not from the MS but some other problems.  I went on methodone for the pain to get off oxycontin, which was a huge mistake.  

To make a very long story short, even though methodone is different than morphine, and people are also different....you most definitely will go thru some emotional stuff while withdrawing, it can't be helped.  I think that is also what you mentioned.  I have a hard time reading long messages.  My brain seems to get overloaded real fast.

If you have any more questions, i would be glad to talk to you...I do have some experience with drugs before the methodone episode.  

Take care of yourself..

572651 tn?1531002957
HiMissingMe - Welcome to the community here.  I hope you will find the information and companionship useful.  This is a very knowledgeable group.

I have not used morphine so I can be of no help to you in answering questions.  I do admire your determination to get off of it and see what difference that makes for you.

It is so hard to face all these changes we go through.  Although you don't see it, your doctor may be onto something in suggesting this is a cumulative reaction to all you have been through.

I know I was cruising along just fine, and out of nowhere the blues hit me this summer.  Whether it is situational or physical, it can and does happen to almost all MS patients. Throw in the withdrawal from the morphine and I would guess you are having problems, too.

I hope you will come back through here and spend more time with us- we really are pretty good listereners.

Welcome again!

PS - if you could, please try to break up your paragraphs a bit - those here with vision problems have real trouble reading text that goes on.  Thanks.
1157044 tn?1318303724
Thank you for your posting.

You know it is ironic.  I handle my pain very similiar to the way you handle yours.   I usually do exercise.  I have been athletic for many years.  I also found that helped me manage my pain.

I also sought help more than once in these last 5 years from physical therapists.  In the beginning, prior to the pain, I went through physical therapy to help rebuild or regain strength as possible in my legs.  My first 2 attacks namely made me near unable to walk.  This first therapist isolated the areas of my legs that were weak and helped me strengthen them.  This inturn became part of my usual weight training routine.  She got me not only strong but stronger than I had been before.  I had even made my 10 mile running goal that I wasn't able to prior to the MS diagnosis.

Then more recently I did see another physical therapist to help me manage pain.  I knew some of my pain was in my muscles (likely spasticity) and she was of great help to me as well.  She also taught me a bit of ti chi which was a form of meditation my body and mind could deal with.  That was another way I combined with others to help manage my pain.  Since, my attempts were to manage the balance of the worst of it without adding additional drugs.  One can only handle so many.

Thanks again for your entry.  It is nice for me to see someone else has the same outcome from approaches I have used to manage pain.

1157044 tn?1318303724
Thank you for your encouragement!  I can't tell you how much of that I seem to be needing these days.   I have been feeling like such a weakling on all parts of me and my life lately.

I knew that tappering off morphine was not going to be a walk in the park, but I figured I could handle it - but the problem is I don't know if it is "handling me" so to speak.

I will keep you posted and I hope very soon I will have something about me - anything about me - positive to report soon!

1157044 tn?1318303724

Thanks for sharing your experience and knowledge with me.

I will definately take you up on your offer and be in touch with you.

I appreciate all!

1157044 tn?1318303724
Hi Lulu:

I will try to take more notice to how I space my typing so that it is easier for people to read.

Thank you for the compliment of my determination - I guess that is something I am not seeing in myself now.

But then, I am not acting or being the person I expect of me either so that makes it harder to see positive in myself.

I do not discount what the MS can do so far as the emotional side.

But, since this is so drastic I do have to question what my neurologist is saying.   Especially since I am reducing my morphine at the same time.  

Who knows the addition of the morphine withdrawal may have been just the one piece it took to put me in this emotional shape.

I don't know.  I am trying very hard to find out.

I want me back - and I want me back ASAP - so whatever I need to do to get there I guess is what I have to do.

I certainly will not throw out a theroy completely.  That is not reasonable anyway.

Avatar universal
How are you now? Were you able to stay off the morphine? I'm asking cause I have MS and have been taking morphine for six months now. I.m scared. Should I stop taking this? (in your opinion)
739070 tn?1338607002
Hi Shy and welcome to the forum!

I had significant pain due to MS and sought treatment with a pain specialist. I was not put on morphine but rather a cocktail of many different drugs, some off label, to get me to my present state . I used to take roughly 15 meds a day and now I am down to about 8 ,including 3 of those for blood pressure control.

My advice is if you haven't seen a pain management specialist , that you do that and try to wean off the morphine. I was very lucky in that my pain specialist was located literally across the hall from the MS center and they had a LOT of experience with MS pain syndromes.

They did NOT prescribe narcotic pain meds for MS patients. One , narcotics do not work efficiently on MS pain. Low dose anti-seizures meds have a remarkable  pain relief effect on MS patients. For instance, I take Neurontin (an anti-seizure drug) in low doses to counter act my paraestheias (tingling and numbness in my left arm and hand).

I don't know that I helped you  a lot but please keep an open mind about pain management in MS. There are many excellent protocols available for MS patients that are narcotic free. Where are you located?

Please let us know if we can be of further help!!!
Avatar universal
I also take Neurontin for my pain which works quite well.  Other than that  I take Aleve and occasionally Toradol PO (yes, they do make it in a tablet) but you can only take it 5 days in a row and no other anti inflamatories at the same time.

Good luck, we are all here if you need any encouragement or butt kicking!
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