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Survey on Pain


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#1 Luthersfaith

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Posted 25 February 2012 - 10:39 AM

How many of you experience pain due to your PD?
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#2 MarciaJ

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Posted 25 February 2012 - 06:35 PM

I don't think I should contribute because my MDS changed my diagnosis to Corticobasal Degeneration. It's a Parkinsonism. Plus I don't know if what I experience is due to PD or something else. It's all a big muddle to me. Oh, I forgot...I don't have PD...I'm still not sure he is correct on that one.
<3.<3.<3.

#3 Jenette

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Posted 25 February 2012 - 10:09 PM

I have alot of pain. It's worse in the morning. My body wants to get up and walk it off, but my mind doesn't. The weather seems to determine my pain level. When it's damp or raining, I'm useless. I have flexoril and Vicodin for those days. I take one of each every night before bed so that as the Sinemet wears off, the pain doesn't wake me.

#4 Luthersfaith

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Posted 26 February 2012 - 06:04 PM

It's all a big muddle to me.

Yes it is a big muddle! I just had a Neuro. Doctor tell me that PD is really easy to treat... all he says he will give me is Mirapex. No discussion about any other drugs. (Everyone who reads this blog knows there are other drugs to consider.) What at muddle.

I have pain in my left foot. Toes want to curl under and the foot cramps up under the ball of the foot. It hurts! Doctor says he can't give me anything for it.

Edited by Luthersfaith, 26 February 2012 - 06:04 PM.

"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#5 Sera

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Posted 26 February 2012 - 06:58 PM

Oh dear, do I ever.

I don't know the proper term, but I get what I call muscle "locks". I get them every single morning. Mostly in my foot. Also in that muscle that runs from the top of your hip, to under your arm, up the rib cage. It usually eases as the day goes on, but not always. I've missed work, sometimes a couple days at a time due to this. Feels like if I move, or stretch those muscles, they will tear.

My Parkinson's doc says this is not Parkinson's related, but due to stress, so sends me off to my regular doc. Regular doc disagrees, and gives me Metaxalone.

Great. Now, I have dueling doctors.

Since most of the pain I have is in the morning (when the PD meds are down), wouldn't that sort of point towards being caused by PD instead of stress? It's not like I wake up stressed. That happens as the day goes on.

I guess my short answer to the survey question is, yes. Yes, I do experience pain due to PD.

#6 Capa

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Posted 26 February 2012 - 09:37 PM

I have a lot of pain in the morning especially as well. In the past few weeks I have been waking and walking on my treadmill to loosen up which has been a significant help.

It is nice to compare notes with others who are going through the same thing.

#7 rws2266

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Posted 27 February 2012 - 09:34 AM

My pain is usually confined to muscle cramps, but some is constant. Luther, concerning your foot issues, try the Vibram FiveFinger shoes. They have done wonders for my balance and I have heard other's that have had relief from cramping. They are ugly, expensive and take some getting used to, but I have 3 pairs now and wear them almost exclusively, even hiking here in Colorado!

Rob

#8 Beau's Mom

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Posted 27 February 2012 - 01:16 PM

Thanks for bringing up the topic!

I started with diaphragmatic dystonia pain (right upper quadrant) in 1992 which for years they blamed on my irritable bowel syndrome. I went on an IBS diet in 2009 which caused great weight loss (40#--yeah!), but did not totally remove the pain, which I began to recognize occurred only in certain standing positions. In 2009 and 2010, I began to have tight neck and shoulder muscles all the time. By this time the PD had traveled from the right side and now included the left side as well. I admit I am not one to just grit my teeth and bear it. I know too much about modern pain management to believe I have HAVE to be in constant pain. I use a great microwaveable heated shoulder and neck wrap I just got on Amazon for $30. It can be frozen and used as an cool pack if that is needed as well.

Some days I handle it better than others. If I've had plenty of rest and downtime, the pain does not take over my mind and make me irritable to everyone around me. If I put less stress on myself to be as strong cognitively as I ever was (which I'm not!), I feel less pressure. I am beginning to be able to let small things go. It sure is a slow process for the Type A's among us.

My pain is directly proportionate to my ability to cut myself some slack. For a long time my intellect made me appear more cognitively able than I was. I was wearing myself out physically, mentally and emotionally and the only person who cold stop it was me! So, one moment at a time, I do.

Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#9 CynthiaM

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Posted 27 February 2012 - 07:17 PM

I've been suffering horrible amounts of pain in my neck and on my back near the lower part of my shoulder blade.
Also my right arm. All of my pain is on the side that is affected by PD. None of the doctors that I've been to will
address my pain issue. There was a high profile arrest of a doctor that prescribed large amounts of narcotics and
other meds. I feel that it has made doctors in my state reluctant to write prescriptions for these drugs.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#10 Beau's Mom

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Posted 28 February 2012 - 12:02 PM

I've been suffering horrible amounts of pain in my neck and on my back near the lower part of my shoulder blade.
Also my right arm. All of my pain is on the side that is affected by PD. None of the doctors that I've been to will
address my pain issue. There was a high profile arrest of a doctor that prescribed large amounts of narcotics and
other meds. I feel that it has made doctors in my state reluctant to write prescriptions for these drugs.



Cynthia, I'm finding that to be true in WA state as well, where they just passed a law stating that doctors had to account for every narcotic they prescribed and that they had to get proof that the patient wasn't doctor shopping to accumulate meds. It's unfair that those of us who do not abuse pain meds (a huge majority) should be affected by those who do (a small minority). I for one am sick and tired of being treated like a drug seeking addict if I even bring up the issue.


On the other hand, I do know that my MDS wants me off all medication that could lead to a fall. There must be a meeting place somewhere in the middle. I know that the pain from my muscle rigidity in back/shoulders/neck area affects me in a number of ways: it increases my depression and irritability, it makes it even more difficult to try to relax those muscles, it affects my marriage and sex life, and it limits my ability to drive and get out by myself for awhile for a sanity break! You can add as many ayou can think of to that list!

Also, I just purchased a neck and shoulder cape that heats up in the microwave and soothes some of the pain away. I got it on Amazon and it is wonderful. You might also try some biofreeze ointment, if you can stand the odor. I have been lucky enough to find a massage therapist who will treat me once a week for any amount of cash I feel I can afford!

Good luck in your search for answers. You sure have to be proactive or have a caregiver who is working through the system with you. If you live in the US and are on SSD or SSI, you might be able to get a caseworker assigned to you to help you navigate the treacherous waters of the US social services ystem.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#11 woodbee

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Posted 28 February 2012 - 04:24 PM

Sorry to hear that any of our group suffers from pain and can not be treated for it either. There is a huge knowledge base out there and I wonder how a dr find time to absorb new information once they leave med school. I don't know how anyone else feels but I would copy one of these articles and give it to each of my doctors.

http://www.pdf.org/e...kinsons_Disease

OR

http://www.pdf.org/w...tanding_pain_pd


Good days to each of you and hope you get relief soon.
eileen

#12 jb49

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Posted 29 February 2012 - 06:44 AM

Thanks Sparky,

I will add that to a list of documents that I feel like handing out to people who have no idea about PD.

Sorry for everyone's pain, mine is in my lower back but I'm sure it isn't as bad as what a lot of you must endure.

Wish I had a cure for all those aches.

jb
Don't be hard on yourself, try your best and be strong!

#13 carol42

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Posted 29 February 2012 - 11:08 PM

I hav a lot of pain with my MDS! shes a real pain in the rectum!.... :mrgreen:

#14 thlthl

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Posted 21 March 2012 - 01:39 PM

I have quite a bit of pain with my PD. It can either be full blown muscle contractions (like you are lifting weights and stuck in the locked position) or just general stiffness or I guess they call it rigidity. It is worse in the morning because the medication has worn off. I have found it helps to exercise in the morning to get the medication working faster. It is also important to keep a good time table and follow it everyday. I have to take my meds every 3 hours or it really increased the pain. I haven't found anything other than the Parkinson's medication or just stretching that can help eliminate it. Not being able to move like long car rides or sitting through a movie can also cause the muscle cramps for me. After 2 months of physical and occupational therapy they have determined that my right side is my dominant side - I didn't know how PD worked - I just took my medication and did what my neuorologist said. But with time off for the therapy - they have told me which side I need to work on more to even out the muscles throughout my body - but the pain can occur anywhere - in fact the muscles around your throat can contract to where it is difficult to swallow....This disease can be managed but I wish I would have taken it more seriously when I was first diagnosed in 2007. But if you have the time I would recommend physical therapy to help with the pain.

#15 roy g

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Posted 21 March 2012 - 09:29 PM

I have quite a bit of pain with my PD. It can either be full blown muscle contractions (like you are lifting weights and stuck in the locked position) or just general stiffness or I guess they call it rigidity. It is worse in the morning because the medication has worn off.



This.

And morning is now between 3:30 and 5:00 am. Most mornings my second thought is Melvin Udall's "what if this is as good as it gets?"


roy g




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