I'm not sure how to describe this but I have become frustrated with Doctor's and I need a place to vent and discuss.

I went to see a new Neurologist at the U of Michigan medical center. My experience there was awful. The appt was at 845 but moved to 915. I saw the Doc at closer to 1100 and didn't get out of there until close to noon. The staff was friendly enough but you could tell they have had it from too many patients.

What bothered me the most was my this Doctor's attitude about pain. "Parkinson's doesn't directly cause pain but indirectly through muscle contraction, arthritis, etc"

The discharge paper included this; "sinemet will not improve the shoulder pain, as it is not related to PD, but may have initially been triggered by his initial muscle stiffness."

Although that statement might be true, I am dealing with this on a daily basis. It comes and goes, sure. I can get relief from sinemet, a warm shower, massage, cannabis, tramadol and even physical therapy. All provide varying degrees of pain relief but no more than a day. My belief is that I can't take enough sinemet to attack the muscle stiffness that I have and pain keeps returning.

But it's not just pain! I feel pain, stiffness, rigidity, a sense of gloom, apathy, etc. I get all of the above kind of at the same time. When I have stiffness.... IT IS PAINFUL! They all come together.. everyday. I get some relief from sinemet (about two hours). My tremors are completely gone fortunately all day with the exception of micro-tremors. I know that sinemet works for tremors but I feel it doesn't do much for muscle stiffness therefore I have pain.

Why the F don't these Doctors acknowledge pain as a big part of this?

I've been through a lot of PT/Bikram Yoga/etc. That is the Docs answer, more PT. I'm not looking for a magic pill but I can do PT until the cows come home and I will still have pain/rigidity/stiffness/etc. To me they go hand in hand.

Does anyone else feel that way?

Hi Ollie, I once had a problem with what I would describe as a "Parkinson frozen shoulder" It turned out that the cause was an abrupt switch between generic and name brand requip. Once the medication problem was solved, the shoulder problem was resolved quickly.

Others have told me of situations where a patient's shoulder pain was the first symptom of PD and the patients had shoulder surgery that yielded no benefit or improvement.

I know that neurologists here use botox on upper limbs. Have you considered that as a possible treatment?

Did dr do any imaging (x ray/MRI etc) to actually verify if there are some physical issues with the shoulder or cervical spine?

If those possible issues ( tear, bursitis ,disk, arthritis etc) are ruled out, then maybe expert chiropractic? Perhaps one with a soft laser (also called low level laser or cold laser.)
Not to be confused with LED light therapy.. Laser is quicker and much better than LED therapy.

Did you do any repetitive, reaching , overhead work or desk job for years, or prior sport/injury in that area? then it could be a chronic shoulder injury...plus PD..

[QUOTE=OlliePop;1164380]I'm not sure how to describe this but I have become frustrated with Doctor's and I need a place to vent and discuss.

I went to see a new Neurologist at the U of Michigan medical center. My experience there was awful. The appt was at 845 but moved to 915. I saw the Doc at closer to 1100 and didn't get out of there until close to noon. The staff was friendly enough but you could tell they have had it from too many patients.

What bothered me the most was my this Doctor's attitude about pain. "Parkinson's doesn't directly cause pain but indirectly through muscle contraction, arthritis, etc"

The discharge paper included this; "sinemet will not improve the shoulder pain, as it is not related to PD, but may have initially been triggered by his initial muscle stiffness."

Although that statement might be true, I am dealing with this on a daily basis. It comes and goes, sure. I can get relief from sinemet, a warm shower, massage, cannabis, tramadol and even physical therapy. All provide varying degrees of pain relief but no more than a day. My belief is that I can't take enough sinemet to attack the muscle stiffness that I have and pain keeps returning.

But it's not just pain! I feel pain, stiffness, rigidity, a sense of gloom, apathy, etc. I get all of the above kind of at the same time. When I have stiffness.... IT IS PAINFUL! They all come together.. everyday. I get some relief from sinemet (about two hours). My tremors are completely gone fortunately all day with the exception of micro-tremors. I know that sinemet works for tremors but I feel it doesn't do much for muscle stiffness therefore I have pain.

QUOTE]

Ollie, I have similar symptoms of upper back/neck pain and stiffness. My MDS says it is directly attributable to the PD and possibly the development of some cervical dystonia (I already have foot dystonia). I think its sort of ridiculous to say that PD causes the muscle stiffness (which we know is fact) but it's the muscle stiffness that causes the pain. The cause and effect may be true, but for PWP, it's all tied together. I've tried all of the same remedies as you have, and they all work short term but then the symptoms return. I find qigong and tai chi work the best for me to stretch out the muscles. Try your best to make sure sitting, standing and walking posture are all upright (hunching over is the worst thing for the stiffness).

Your doctor is also wrong about the frozen shoulder as it is a known, and rather common, early symptom of PD. I have had it in both shoulders. Both healed over time but with some loss of motion.

You should consider speaking with another MDS.

Good luck,

Gary

I highly recommend:
The Frozen Shoulder Workbook: Trigger Point Therapy for Overcoming Pain and Regaining Range of Motion Paperback – August, 2006
by Clair Davies NCTMB (Author), David G. Simons MD (Foreword)

Irony is an ortho doc commented my shoulder would never improve until I had rotator cuff surgery. It was painful and stiff, couldn't through a ball overhand only underhand. So with the book and a theracane, after a year I was able to spin my arm around in a full circle! Amazing! Never had rotator cuff surgery, either!

Fast forward 10 years... Dx of PD. I suspect the frozen shoulder was just one of the issues that was PD/Dystonia related but never realized it.

Yes, I still have my book and still refer to it. Between local PT classes for PWP, and David Zid's book I'm doing great.

Thankfully my MDS does accept that PWP do have pain in their bodies. LSVT BIG got me moving, and daily stretching makes a huge difference. The pain is still there, but it is a great day and time to keep moving.

My pain is PD. I am fine all day unless my L-dopa level gets too low (from neglect or being too busy in the garden) then, the neck pain will start creeping in til I take a dose of fava plant tincture (that I make) . Then in minutes I am pain free again. First waking up in the morning is my pain time. I stretch and massage neck and shoulders in particular, but all over for 10 to 20 minutes before I am released from it's clutches. Then the channels are open it seems and my eyes start to water finally and I am free for usually the rest of the day. Seems like the stiffness causes pain because the muscles shorten and we have to stretch them out to their limit before they will relax. Hope this makes sense. It takes discipline to do all this stretching and the knowledge that it will be over soon is the only thing that gets me to the release point some days when it is so bad. We have to overcome and really work to keep the monkey off our backs. A cute trained pet monkey would be ok, but not this big one that clutches onto your shoulders and pulls you down/ and weighs you down/ and slows you down ...giving you pain and the feeling that you can't even think about getting out of bed. We have to fight that big , ugly monster off! Keep the faith....fight the good fight. We can overcome! So far I am winning

Thanks Aunt Bean! The way you describe pain is exactly the way I feel. When that monster grips it is an absolutely shi!!y feeling!

I read your website regarding fava bean tinctures. I will be experimenting with cannabis tinctures for my symptoms, why not fava as well!. To get the best benefit from cannabis, the cannabinoids with terpenes and other molecules are necessary (not just THC or CBD). Who knows, maybe there is a synergistic effect with fava? Have you ever tested your tinctures? Have you come across any studies that show long term use and dyskinesia?