[duckpackerfan]

I have parkinsons with severe dystonia and a lot of pain. muscle pain and then horrible stabbing pains. i have the dystonia everywhere. arms legs torso neck eyes jaw tongue throat face bladder and i believe stomach. it yook me six months to see neurologist which was last week. she told me there is no pain with this and so wont refill my oxycodone which is helping. she backed off my sinemet er due to dyskinesia so now i really hurt cause my contractions are back. i feel doctor doesnt care how i feel. i hurt so bad i am in bed almost all day only let dogs outside and i cry a lot. not sure how much more pain like this i can handle. its bad enough my body doesnt work righy. even with six meds i still have to use cane to walk. its progressed very quickly too.
anyone have bad pain. if what does your doctor give u.

[citabriapilot]

It appears that many PD docs do not believe that PD causes pain. I know my doctor ignores my pain so I get my pain meds from my primary care physician. I was using tramadol and it helped a lot but we changed another med and tramadol was contraindicated so I'm using Hydrocodone right now. I would prefer to go back to tramadol as it worked much better.

[Jomar]

Have you had any recent MRI or x rays to check for any other causes for your pain?
Any physical therapy?

My dad has some DDD/arthritis in his spine along with PD so he has a TENS unit for at home. I also got him a far infrared heating pad - the heating goes much deeper than regular heating pads..

[NorCalGal]

I know it isn't necessairly an easy thing to do but if possible you should look into it. I had terrible dystonia in my feet and my doctors told me to "just walk it out" One day I saw a report on tv about Botox helping with cramps. My old neurologist had retired and I "inherited" a new one who thankfully was open to my suggestion of using it....other things, unfortunately, he has shot down such as the nicotine patch so I just started smoking...which I'm not suggesting you or anyone else do. Its not related to the dystonia either. Best of luck on your PD journey

Diana

[Thelma]

The time I was diagnosed with the second time of having Cancer there was a great deal of pain that was caused by operations on my legs over the years and when I had as much as I could take, and beleive me I can take a lot, I told my doctor and met with with a face that appeared to be amused looking back at me.

I went home about to cry at being ignored and then i got mad. I went back the very next day without a appointent and told them i was content to sit there as long as necessary to see her again.

After a couple or hours when they decided I was serious I was called into her office and before she could start at me I told her plain out that the rudeness of her was unwarranted and she could listen to me for a change.

I was, to me, in severe pain and needed a pain killer of some sort. Not for the Cancer but because of my legs and hips. I now have arthritis in knees and hips and unable, due to Coumadin not being able to regulate, l looked at her and she seemed shocked that I would speak to her that way but I reminded her that this was the way it was and if this Cancer was going to kill me I did not need to suffer along the way with this problem.She sat back and then said she was sorry and wrote a prescription for me for Tylenol 3 which I still take . I have been offered since oxycodan but that is not for me.

So my advice is take the initiative and tell the doctor straight out all is not Parkinsons but some is for dm sure and you see his side but it is you who is hurting and only you know how much. See what happens nothing is worse than continual pain.

But beware of oxycodan I had a very good friend on this very forum who lost her freedom for this foul drug.

You take care and remember this doctor works for you and fire him if he soesn't help you as you want. Parkinsons is not a loss of pride it is a dm disease that one day may effect him or anyone as well.

Fight for the right to denounce Parkinsons and all diseases and make known how the world can help. We are only free when we are one but it is lonely.

[made it up]

Originally Posted by duckpackerfan

I have parkinsons with severe dystonia and a lot of pain. muscle pain and then horrible stabbing pains. i have the dystonia everywhere. arms legs torso neck eyes jaw tongue throat face bladder and i believe stomach. it yook me six months to see neurologist which was last week. she told me there is no pain with this and so wont refill my oxycodone which is helping. she backed off my sinemet er due to dyskinesia so now i really hurt cause my contractions are back. i feel doctor doesnt care how i feel. i hurt so bad i am in bed almost all day only let dogs outside and i cry a lot. not sure how much more pain like this i can handle. its bad enough my body doesnt work righy. even with six meds i still have to use cane to walk. its progressed very quickly too.
anyone have bad pain. if what does your doctor give u.

Hi and welcome,
Personally I think dystonia is the most annoying aspect of P.D. So your posting jumped out!
The stabbing pains, are they part of PD though or something unrelated?
For the dystonia I find it helps to keep a fairly consistent dose of levodopa in your system to counteract it though there are times when even then an off that occurs for long enough still brings on dystonia but to a lesser degree when a consistent levodopa dosage is maintained.
What does the ER in Sinemet stand for emergency or extended?
If it's extended I'm wondering if it's a bit like Sinemet CR controlled release.
Different countries different names I think!
Anyway my point is CR is a very inconsistent way of keeping levodopa in your system it sounds ideal but can give to me a rush of on with strong offs on either side if you do what is prescribed and is in theory a good idea.
I've never thought to take any sort of analgesia for dystonia nor has it ever been suggested by neurologist.
Perhaps you could see your GP and get the stabbing pains investigated independantly of Parkinson's and try a more consistent dose of sine met maybe the plain old yellow tablet form.
Best wishes.

[ginnie]

I liked what Thelma said....look them straight in the eye and tell them you are in pain. Sometimes we have to do that, and or let a physician go and seek someone else. Doctors need to listen. I hope all is better for you. ginnie

[pegleg]

Dr. Michael Rezack , Medical Director for the American Parkinson!s Disease Foundation Young Onset Center, wrote a good follow -up and much more thorough content to an article that I wrote for APDA Young Onset
Dr. Rezek's article:
http://www.youngparkinsons.org/what-...insons-disease

My article:
http://www.youngparkinsons.org/what-.../articles/pain

Pain is not always caused by PD, but in my case it definitely is (and your situation sounds similar). I would suggest you see a pain management specialist. He/she will be able to administer injections, if needed, and the pain doctor will help you maintain a good quality of life on as low. a dose as possible.

Addiction to prescription pain drugs is growing in leaps and bounds. I am constantly trying to reduce my pain medications and therapy knowing how. addictive they can become. A pain management doctor is required by law to follow strict protocol in prescribing pain meds for patients.

I do not know where you live, but I am sure that Julie Sacks with the APDA Young Onset Center near Chicago, will be happy to ' help you find a good one. It sounds like you need a more understanding doctor. I would take your doctor a copy of dr.m Rezek's article..
Peggy

[moondaughter]

have you considered medical marijuana? Not only might it help with the pain but also other pd symptoms.