I have muscle rigidity so bad some mornings it just makes me want to cry. My shoulder and neck muscles are literally rock solid. My buttocks, periformus, muscle hurts on both sides and I can hardly walk. I don't sleep well anymore, probably because my muscles hurt so much. At work I am so sleepy I can barely make it thru the day. My walk looks a little bit clumsy and my feet frequently run in to each other. I am on Stalevo 150 mg 3 times/day, carbolevadopa 25 mg 3 times a day and mirapex .5 mg 3 times a day. Oh and I am on Cymbalta, 60 mg 1 time per day (What! Me depressed?!)
I need to start doing more studying on pd and meds as I have noticed all you do. I think I am getting worse, but at this point, leave it up to neuro to treat me. My next appt is in April. My feelings, by the way, change daily depending on how much sleep I have had the night before. Yesterday I felt grand.
I am just venting again. But it helps to hear how others respond to my posts. Please let me know what you do to help your rigidity and pd besides just taking meds. Here is what I do:
1. I go to a massage therapist about 2 times a month for a deep tissue massage in back and upper back, neck area.
2. I do stretches in neck and upper back area every morning.
3. I lap swim hopefully 3 times a week.
4. I try to fight my depression by getting engrossed in a hobby I love. Thank god I finally found one after battling depression since forever.
5. I keep working because I need the money, but I think it is good to keep my mind active.
Thanks for listening. I need to go do my morning stretches.

Been on Ginseng for a week, 250Mg twice a day and it has helped a little, may be placebo, to early to tell.

Exercise helps some.

The only time I can get close is through my daily Lazy-boy meditations. I sit it, fully reclined an pay attention or watch my breathing, sounds I hear, etc. I watch my thoughts as they arise but let them go and don't pursue them (if I can help it) and eventually barring interruption from my cats or phone, I reach a state of mind where I am still aware of my body and mind but free from thought and rigidity. The challenge in getting to that place and not getting angry and frustrated with the rigidity. It's like a strong undertow that pulls me back out. By residing totally in the observation portion of my mind I can usually make it.

It doesn't help me walk better or relieve it when I'm fully awake, but I am conscious enough during the meditation to notice and enjoy the absence of rigidity in my body.

Robert

Libra, I don't have the severe dystonia issues that you apparently have, but I understand that the classic benzodiazepine Valium(R), besides being a powerful anxiolytic, is also a great muscle relaxant. I have used it in the far distant past for back muscle strain with great results. I am a little hesitant to mention it because of its potential for abuse. If you have a primary care doc that might be a little more accessible than your neuro, you might ask him/her about this approach to getting some relief from your muscle rigidity and pain.

I would like for someone else on the forum with dystonia issues to jump in and give Libra some input on this.

Robert

Hi Robert:
How did you learn to meditate? what is it?
The furthest I got is Yoga physical exercises (video instructions) and breathnig exercise (just breathing).
It sounds great and worth learning only if we know how

What an interesting response. So this must be meditation, something I have never tried. I do enjoy my gliding rocker, spend lots of time there when I am not at work or other places. It's a nice concept that I will try, Thank you very much RD.
Also thank you RLS for your concern and suggestions. I have been on muscle relaxants in past and morphine (avinza) for pain and nothing seems to help relieve dystonia. THis is the first time I have called it that, but that must be what it is. It is very painful and unrelenting. I can't even reach my arm out to side without it cramping in my shoulder and neck. I also had botox shots to neck and shoulders and cervical blocks just recently in neck area. I guess my next thing to try is like RD said meditation or possibly acupuncture. I hesitate to try valium because I work and also I do have an addictive personality and have to watch meds like that.

My mom took me to a Transcendental Meditation(TM) school when I was young. That was the first time I experienced the sensation of being conscious while my body seemed to be asleep. TM is the repetition of a mantra they give you, kinda like the yogis you see saying "ohmmmm" in the lotus position. Some people listen to the slow ringing of a bell or stare at a lit candle.

The trick for me is trying to be observant as possible of all my senses, just watching, not contemplating. I watch my thoughts as they arise out of nowhere and let them go. I watch how my breathing continues on it's own. Thoughts are the biggest distraction, and for me, PD creates a lot of thoughts. In my mind observe how tight my muscles are, how my hand shakes. As long as I can let the thoughts and emotions of the day go I eventually arrive at a pleasant state of mind where my thoughts and body are quiet but my consciousness is still aware. It's wonderful. Sometimes I can get there in a few minutes other times it takes longer. Other times it stays out of reach.

The bell method is cool because it distracts your mind from thought as you ease in to quietness. The bell rings and you listen to it and follow the sound as far as you can until you can't hear it and so on. Amazon.com probably has CDs for this.

A book I read in the 90s called the Power of Now was quite helpful. It doesn't really talk about meditation, it explains being present, being in the Now.

The Power of Now
http://www.amazon.com/Power-Now-Eckh...5948822&sr=8-1

Practicing the Power of Now: Essential Teachings, Meditations, and Exercises from The Power of Now
http://www.amazon.com/Practicing-Pow...5948822&sr=8-3

Libra

I'm so sorry you feel so horrible. This sounds like you need a medication adjustment. I do know that the dystonia I get in my feet has completely left since I've increased my Sinemet. (I'm still at the early stages so I have room to grow still). You should discuss this with your neuro as s/he can work with you on a new course to take.

Good luck,

John

You sound and look very familiar...have we met before?

I have dealt with painful dystonia and found that the only thing that helped was Sinemet (Levodopa/Carbodopa). In the past year I have had to increase my dosage from 4 25/100 tablets to 7, I also take requip, amantadine and effexor. Exercise makes me feel good especially stretching, hot tubs feel good too. I am going to try the meditation, I'd like to find that peaceful place in my mind. Any more good ideas are welcome.

This dosing is similar to mine. I'm on 6 regular sinemet and 1 CR, which I take at night. I also take amantadine 3x per day and a Celexa. I too find a hot bath and stretching helpful.

Before I was on the sinemet, I would get the dystonia while driving, sleeping, sitting, and many other random times during the day. I could also barely stretch. I felt like I could stretch only to a certain point, but could go more and could never undo the tightness. It was as though my legs wanted to draw up tight against my body, or I wanted to walk around with a short right leg. The other things too that have gone away are the numbness on the right side of my face, the tight band feeling across my chest, hands and stomach, and jaw clenching. After many years of clenching my jaw tight and actually breaking some molars in my sleep, the relief came immediately with my very first dose.

When the sinemet works, it's like gold.

John