Parkinson's Movement

Parkinson's Clinic Visit & the Pro's and Con's of Pain Meds

Yesterday I spent all day at the Parkinson's Clinic. I had to wait 5 months for the appointment, but it came so highly recommended that I didn't care. I started out seeing the nurse for vital signs, history and such. Next was physical therapy, then occupational therapy, then speech therapy, after that the case worker and finally the Doctor. Robert and I both liked the Dr. because he seemed willing to help me in any way he can. He also agreed to take on my Neuromuscular disease and almost seemed excited about reading up on it and learning all he could. Finally it came down to pain and what he could do to help me.

It was explained to me by my Neurologist that taking pain medication long term trains the brain to want and need those drugs on a steady, regular schedule. If it does not receive the pain meds as scheduled it makes you think your body is in extreme pain, and it is in extreme pain it's just not from the part of your body where the pain originated, this pain is coming from your brain. I was informed that I will need to start weaning off the pain meds and start retraining my brain.

I would truly rather not have the pain and I tried to explain that I just wanted to be able to contribute more to my life. The pain meds just take the edge off the pain so that I am not curled up in a ball crying the pain so bad I want to die. He listened very respectfully and then told me again I would have to start weaning off the pain med and start retraining my brain. It all sounds very plausible and I certainly do want to be addicted, but it scares me.

All in all it was a long day but a good day. I liked the way all the departments worked together and they told me they also will keep in contact with my other doctors so that I would have complete comprehensive care.

I think that last line is a lie because I have never seen or heard of that before in the Medical profession!


8 Replies

Sounds great!

Praying it truly does help you. Please keep us upto date.


Sounds like a great day and you are so blessed to be able to get service from a a clinic like that when so many don't have resources like that close to them.

The pain issue I truly do wish they had other options than pain meds. Have you tried acupuncture or other alternative methods of pain management?

I do believe as Di does that prayer does help!!!



Let me know how it goes with the weaning off. I'm on xanax and clonopin now for pain and more pain. What does he suggest you do in the meantime and what do you do for the pain? I too want to spend less time curled up on the couch. I know prayer works. I pray for wisdom to know right action .


The neurologist started me on Phenytoin Sodium Extended 100 mg caps. 1 pill 3 X a day. This med is used to control seizures, migraine headaches and trigeminal neuralgia. He is hoping it will help with my muscles cramps and fasciculations . I have only been taking it a couple days and although I think it might be helping the muscles I am not feeling very good and I believe I am having some side effects so I will be calling the doctor in the morning. As for dealing with the pain I am a little confused on that. He told me he wanted me to wean off the pain pills but he didn't tell e how or when. Another question for tomorrow.

I really don't feel well...


When my neurologist and I decided I should quit Azilect, he upped my dose of ReQuipXL 2 mg from 4 to 6 to help with the withdrawal from Azilect. It took 6 weeks for my body to get rid of the Azilect effects and then I stayed on the 6 mg dose of ReQuip XL for about another month. Now I'm back to 4 mg ReQuip XL and feel the same as I did when I was on that dose before. We are definitely drug addicts and we pay big time if we just stop taking them because we can't see just what they are doing. That's my experience any way.


Soon we will need our own 12 step program. PDDA (haha)


I'm ready to start on 12 step. Sometimes I wish I had never started in sintemet.


So far the best medicine for pain that I have used is an ice pack. It is non-addictive, inexpensive, you do not have to travel far to refill it (only a trip to the freezer), you do not need to see a doctor or get a prescription, it reduces inflammation and swelling, and it works.


You may also like...