Parkinson's Disease Tulip


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Old 12-09-2014, 04:46 PM #1
OlliePop OlliePop is offline
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Default Pain Management

Pain... who has it and what is your best remedy?

I need help to determine what I might do next. Please keep in mind that I work in an sensitive industry and I cannot take most drugs for the symptoms of PD.

I am recently diagnosed, 48. I currently take 2 25/100 Sinemet tabs, three times per day. This works well for most of my symptoms except that it does not do much for pain. I have shoulder pain/back/arm pain, from the stiffness/contraction of PD. I can only take Sinemet (cannot take agonists) and still will have to prove in the workplace that I am ready and able to return (big if!)

Cymbalta was first mentioned from my Doc... wow, nice side effects on that one! Who is on it and what is your experience? He suggested that it should work on pain and depression since it is a serotonin-norepinephrine reuptake inhibitor. Guess what... I can't take it!

He also mentioned that Celexa (this is one I can take!) as an option that works on serotonin but also would work indirectly on pain... I'm not sure that I buy that one. I get the depression aspect but pain? Anyone comment on this drug?

Cannabis... obviously I can't do this one (yet) but it seems with it's side effects (buzz, munchies, red eyes)... I can live with these! Anyone have experience with it?

Thanks.
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Old 12-09-2014, 05:37 PM #2
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Quote:
Originally Posted by OlliePop View Post
Pain... who has it and what is your best remedy?

I need help to determine what I might do next. Please keep in mind that I work in an sensitive industry and I cannot take most drugs for the symptoms of PD.

I am recently diagnosed, 48. I currently take 2 25/100 Sinemet tabs, three times per day. This works well for most of my symptoms except that it does not do much for pain. I have shoulder pain/back/arm pain, from the stiffness/contraction of PD. I can only take Sinemet (cannot take agonists) and still will have to prove in the workplace that I am ready and able to return (big if!)

Cymbalta was first mentioned from my Doc... wow, nice side effects on that
one! Who is on it and what is your experience? He suggested that it should work on pain and depression since it is a serotonin-norepinephrine reuptake inhibitor. Guess what... I can't take i

He also mentioned that Celexa (this is one I can take!) as an option that works on serotonin but also would work indirectly on pain... I'm not sure that I buy that one. I get the depression aspect but pain? Anyone comment on this drug

Cannabis... obviously I can't do this one (yet) but it seems with it's side effects (buzz, munchies, red eyes)... I can live with these! Anyone have experience
with it?

Thanks.
Hi Ollie and welcome,
The pain could be from one of the Parkinson's symptoms dystonia.
You take 200mg Sinemet 3 x daily.
Perhaps try spreading the same daily dosage over a longer stretch in the day so instead of say 6am midday and 6pm try 6am 9am midday 3pm 6pm 9pm 100 mg each dose.
You're still on same amount that neuro prescribed but not such a big hit each time.
Itt should help give you a smoother more consistent dosage maintained throughout your day.


Sorry can't help re other drugs you mention.

throughout the day and it might help.

Last edited by Jomar; 12-09-2014 at 10:06 PM. Reason: fixed quote tag
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Old 12-09-2014, 08:31 PM #3
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Default nicotine? mucuna?

Early on we had success with nicotine patches....you have to work up from the 7mg patch and you have to take if off several hours before bedtime (we never got as high as the 21mg patch, made us too dizzy) but for a couple of years it really helped keep things "normal".

Then nicotine started leaving us with very hard offs, and we had to quit the patch. We found mucuna, an aryuvedic herb. Search this forum for more information, but for us it helps in many ways:

1. comes on within 30 minutes at the most
2. it still works even if you eat (can't say that about sinemet)
3. helps with all symptoms (sinemet does nothing for tremor and little for pain, in fact, if mucuna did not wear off so quickly, we might ditch the sinemet entirely)

We take 1.5 TEAspoons in a small amount of water, mix it up, and drink it...ghastly flavor, so wash it down with more water. We may take this several times a day, once, or not at all, depending on what kind of day we are having

It's cheap, too: a one-pound bag is around $20.00 and lasts a long time. Put some in a glass jar for use, and freeze the rest in an airtight bag

Also make sure you aren't deficient in B vitamins or magnesium as most people are (Epsom salt baths can help with the magnesium). Both can cause cramps.
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Old 12-09-2014, 10:11 PM #4
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Are you sure the shoulder, arm, back pain is from the PD only?
Both side equally or more on one side than the other?

Could it be from some type of repetitive motion injury /long time desk work or such?
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Old 12-10-2014, 10:12 AM #5
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Made it up - dystonia.... That's exactly what it feels like. I'm going to try that schedule of one tab/per, I like your idea.

Lurking - I have some MP. Back when I was still working and just prior to being officially diagnosed I experimented with it. It did seem to work for the pain and other symptoms but was very short lived. I will investigate it further. Regarding the tremor, I do have a tremor but for the most part it is an occasional slight rumble, it used to be much more but the Sinemet is very effective for my tremor.

Jo-mar - I have been to a plethora of Doctors for my pain and there is nothing stemming from overuse, injury, etc. The best that I ever felt was when I was consistently doing Bikram Yoga and I worked out all of the pain in my lower back (different issue) which was why I started Yoga. Then one day I noticed a circle of pain radiating from my right shoulder blade. No exercise, massage, physical therapy, etc, could touch it. Nothing on MRI, x-ray, etc. Now I'm not 100% convinced that this is from Dystonia from Parkinson's but I am 100% it coincided with the onset of my PD and it was the first symptom. My other symptoms were all creeping up too but the pain was the first and probably the most annoying symptom overall.

Thanks for your responses, I appreciate it.
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Old 12-14-2014, 01:46 PM #6
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Neck and shoulder pain are something a lot of us have (monkey on the back) it is one of my first symptoms that my l-dopa level is too low. I can stretch these muscles out to their limit and stifle it for a while even without taking my tincture. In the bed...stretch your arms up into a bent positions over your head and push against the wall or headrest if sturdy...like you need to hold the world up. Do it together a few times and hold and then do alternate left right pushing. Make your scapula and shoulders push into a stretch as you do this..it is a workout. If you are "up" Stand with your hands above you in a doorway and your back against the frame and stretch, pushing neck and shoulders back , then put hands behind your shoulders on the door frame behind you and stretch/ then drop hands to your side and grab the door frame behind you and stretch. Each position of the arms stretch different muscles that get tight on neck and shoulders. Also, it is good to frequently turn your head slowly from side to side/ up and down/ cock it sideways also. You can also put your fist under your jaw and push down with chin and then push your fist upward and then resist it with your head and push back downward. Sitting in a chair, reach across to your left side with the right arm and grab bottom of the chair. Then turn your body and left shoulder as far backward in a stretch as you can. Repeat on other side. You can also grab the bottom of the chair with both arms straight down and bend your elbows...pulling the shoulders down as far as possible. These all help me with tightness and pain.
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Old 02-11-2015, 11:32 PM #7
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The best natural pain remedy I have found is Nopalea (Nopal cactus juice). It knocks out my inflammation and pain better than any prescription medication ever has. You first take a "loading phase" as they call it, then take around 3 oz or so a day after that. It is amazing stuff!
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Old 02-14-2015, 10:41 AM #8
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Default Great pain relief

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Originally Posted by Stephie View Post
The best natural pain remedy I have found is Nopalea (Nopal cactus juice). It knocks out my inflammation and pain better than any prescription medication ever has. You first take a "loading phase" as they call it, then take around 3 oz or so a day after that. It is amazing stuff!
I have found a great pain relief. It is cbd which comes from marijuana or industrial hemp. If you get the extract from hemp there is no the so you don't have to worry about tests. I take half a dropper twice a day under the tongue.
I get mine from Sootheen.com.
From the same site I get cream with cbd which does wonders for my neuropathy. Hope this helps. People always think that Parkinson's just makes you shake and walk slow. I wish! I fell twice in the last week, once against a concrete fireplace. So there's those extra pain things!!! The other thing about cbd is it doesn't seem to have any side effects.
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Old 02-17-2015, 08:42 AM #9
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Seriously?
Pain- who has it ? Id say EVERYONE on this forum has it in some form.

Best remedy is dependent on MANY MANY things and facets of your physical make up.

Very vague questions here and no explanation of exact injury. Mine was all combat related TBI, Cervical , and serve PTSD from 3 IED blasts and other related weapon issues. Tried EVERY medication available and still in unreal pain!
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