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Mihai

Can you describe your pain?

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Mihai    104

Hello PD friends,

 

One of the symptoms that many of us deal with is pain.  I'm just curious as to how each of you would describe the pain that you experience as part of your PD journey.  I have had PD for 15 years now and am dealing with much more generalized pain.  Some of it is due to rigidity (especially in the morning after I have been still most of the night).  Some of it is due to dystonia.  It seems to be mostly muscular pain, although it often feels like it is also in my joints.  It's not easy pain to describe...  Sometimes all I can say is that my whole body hurts...a mix of sharp pain and dull aches.  I was just wondering if others here dealing with pain as a symptom could give me some insight into how you experience (and how you would describe) that pain.

 

Thanks for any thoughts or help!  It's always good to know others understand!

 

Blessings,

 

Mihai (Michael)

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stump    452

I tend to get more localized pain, perhaps as I'm only a bit over 2 years since symptoms first started, and 1.33 years out from Dx.  My left forearm gets sore a lot.  It's mostly a muscular pain that I feel between the radius and ulna bones.  Sometimes I get quite painful cramps in my left had or foot.  Most other aches and pains are not consistent enough to attribute to PD, so get written off as due to something more transient.  Had some back pain

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Gardener    193

Michael,

 

I would describe my pain much as you did.  My hands are the most affected and their pain signals the first warning that my medication is wearing off.  I can't hold an object such as a paint brush, pruners, etc. for more than 5-10 minutes as they will cramp. My body pains move around - I might have problems with a hip for several months then it disappears and I'll have pain in the other hip.  I have a lot of neck and back pain.  It is difficult for me to distinguish between dystonic pain and pain from stiffness but I guess it really doesn't matter because both are helped by medication.  I don't take pain relievers during the day but I have been taking Advil PM at night and it has helped with sleep. 

 

Thanks for posting this topic - it helps to hear from those who have had PD for many years.  Gardener

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New normal    1,273

Pain moves from place to place...mostly in shoulders and right leg. Recently, I have had sharp groin pain as if I sprained it over exercising. Tendons feel stretched beyond capacity.

 

I use an exercise ball at least 2 hours a day to stretch tendons, muscles, and fascia. Watching TV, reading a book, I move the ball in every direction. I take it to bed when we retire to watch a movie and stretch the entire time.

 

If I dont stretch, pain and tightness return. Neuro says it is beginning of regidity..

 

More annoying, is a feeling of "chaos" throughout the body. A pressure builds like an energy that must be released. I think it is what restless leg syndrome feels like...but all over. I find if I sit directly in front of powerful jets in swim spa, it is relieved. I also use a yoga tube...a black hard rubber tube with 1/2 inch nobs. Laying and rolling on it is like a massage or chiro applying to pressure points.

 

Internet articles say alternative stimulus to area helps...guess that is what I am doing.

 

Consider pain was not noted as a PD symptom til recent years.

 

Keep swimming.

 

NN

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papa57    60

Usually it seems to be associated, I guess, with an old injury. I once separated my shoulder while skiing. It never really hurt after that until PD came into my life. Recently I've had almost constant pain adjoining my right collar bone. Have no idea why.

 

Any other "pain" seems to be associated with rigidity. Exercise and stretching help a great deal.

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adams234    238

The pain I associate to PD is in my neck and shoulders. I get stiffness pain in my calf muscles (as if they are tiered/over worked) and this is my first sign that I need my next dose of meds. In the morning my feet are sore sort of like I have been walking all night. When I wear off I get cramping dystonia pain in my feet. The 50/200 CR has helped my feet overnight.

 

Most of my other aches I attribute to other injury since they don't change with meds.

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Good question, Michael.  Every time I read something from New Normal I cringe because it sounds so familiar to my journey--and now yours too.  Yea!!  Buddies in arms.  No, I mean "boo, Parkinson's."  Maybe someone has the answer.

 

My Simple Answer is "No."  I cannot describe the pain.  I try, but the human language does not seem to me to contain the right words for me to describe most of the symptoms of Parkinson's, let alone the various and assorted pains.  In general, it feels like I've lost control of and access to my muscles.

 

As for me, some of my pains occurs during movement; some quickly build shortly after I stop moving; and others because I have not moved.  The location of the pains can vary from moment to moment.  The pains can vary from a dull aches to a sudden and sharp sensations.  Sometimes it feels like a muscle sprain/strain and at other times it feels like a muscle tear.  Sometimes it feels like my muscles have become dry and brittle, like beef jerky that cracks and crumbles when bent.  Sometimes movement of muscle feels like I am ripping apart two pieces of Velcro.  Sometimes its a spasm (sudden and sharp sensation that occurs with movement and quickly stops that movement).  Sometimes a charlie horse (like an ache caused by a strike to the muscle).  Sometimes a cramp (muscle balled up).

 

The location of pain can vary around the body, usually depending on what I've been doing.  Talking can cause pain in the larynx; laughing can cause abdomen muscle pain; sometimes holding a book can cause muscle ripping sensations or cramping sensations the length from my fingers to my shoulders.  Sometimes stiff and sore neck and shoulder muscles cause headache sensations.

 

If dystonia decides to strike my feet and fold my toes back to meet the heel, it tends to feel more like a rigid bone that if I could take a hammer to would yield and flatten out the foot back to normal.  In those cases I have to remind myself that its the muscle pulling back, not a bone growth problem that a hammer can break apart and cure.

 

The intensity of the pains can vary, usually based on the activity.  The strenuous nature of an activity doesn't really seem to directly correlate with the intensity of the pain.  On the doctors poor excuse for a pain scale, I have generally rated most of my pains at between 3 and 9--only because I'm sure that getting boiled in oil and then lite on fire has got to hurt more than my filleted muscles.

 

Sometimes, Sinemet can resolve most of the pains, and sometimes curcumin helps (the dystonias).  If the pain has persisted for days, or weeks, to the point that I wise up and concede that Sinemet isn't going to wind down the pain, I'll take 400 mg of Ibuprofen.  (Found out by accident that large doses of Norco also work fairly well, although regular or even infrequent use of an opioid is not something I want to dabble with.  On another occasion (again in a hospital setting) I learned that Morphine does little to nothing.)

 

Sometimes if I remember, I will prophylactically take Ibuprofen before an activity in an attempt to ward-off or lessen the expected pain.

 

Yoga, LSVT Big training and other stretching exercises have become mandatory.

 

Hope this helps answers the question, adds to what others have written or is useful.  Probably more I could write, but my fingers and brain are done.

Edited by BigRingGrinder
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Forgot some of the devices that help me with muscle pain (easing it and delaying the onset of pain) and even a bit of muscle endurance/compliance:

 

1) Medical massage;   2) physical therapy exercise bands to lightly exercise my arms and legs if I have to sit for long periods of time (like a two-hour car ride to visit MDS);   3) cervical collar;   4) compression socks,   5) compression recovery pants for groin, thigh and calf muscles;   6) compression recovery arm sleeves;  and 7) a weight lifting belt around my waist to hold my upper body upright, instead of slouched.

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adams234    238

I have found the Ibuprofen seems to help. I take between 400 and 800mg at a time. If possible I keep the dose low or only use as little as possible. I do not want to hurt my liver.

 

Exercise is also a big help.

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Linda Garren    733

Forgot some of the devices that help me with muscle pain (easing it and delaying the onset of pain) and even a bit of muscle endurance/compliance:

 

1) Medical massage;   2) physical therapy exercise bands to lightly exercise my arms and legs if I have to sit for long periods of time (like a two-hour car ride to visit MDS);   3) cervical collar;   4) compression socks,   5) compression recovery pants for groin, thigh and calf muscles;   6) compression recovery arm sleeves;  and 7) a weight lifting belt around my waist to hold my upper body upright, instead of slouched.

 

Amazing, BRG.  First time I've heard of this.  I especially like the idea of a weight-lifting belt to help hold the upper body upright.

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Mihai    104

Hi all,

 

Thanks so much for the information and suggestions!  I appreciate your insight and willingness to share it.

 

Blessings,

 

Mihai

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SeanK    1

I'm newly diagnosed w/ mild symptoms... some tremor in my left hand, slowness (bradykinesia) in my left arm/hand.

 

Oddly enough the pain I get is mostly in my jaw.  I find when I'm doing things w/ my bad hand (typing on a keyboard, cooking), I'm inadvertently clenching my jaw.  At the end of the day, I'll often realize how sore it is.  Like if you'd chewed the same piece of gum all day.  I'm trying to consciously think about relaxing my jaw as I work during the day... including as I type this.  It helps when I can remember.

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swva    81

They say pain is not a symptom of PD, but PD causes muscle tension and stiffness, which results in pain. Pain in my wrist preceded me noticing the tremor in my finger. I believe I was tensing my muscles without realizing it.

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New normal    1,273

I'm newly diagnosed w/ mild symptoms... some tremor in my left hand, slowness (bradykinesia) in my left arm/hand.

 

Oddly enough the pain I get is mostly in my jaw.  I find when I'm doing things w/ my bad hand (typing on a keyboard, cooking), I'm inadvertently clenching my jaw.  At the end of the day, I'll often realize how sore it is.  Like if you'd chewed the same piece of gum all day.  I'm trying to consciously think about relaxing my jaw as I work during the day... including as I type this.  It helps when I can remember.

 

Hi Sean,

 

DH (dear husband) who has PD (Parkinsons) has jaw pain which radiates into his temple. We have been working with an excellent dentist to balance his teeth and make sure his TMJ is aligned. It has helped as well as using a night guard while sleeping. Operative word...is "excellent " dentist....

 

Welcome to the forum, Sean. Notice posters put info in their signature line so we can compare our symptoms, meds, so members can find others with similar histories.

 

PD is unpredictable from day to day. One major challenge is to distinquish what is PD related and what is not.

 

I hope you and other new posters feel comfortable in joining the conversation.

 

Good luck to you.

 

NN

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swva    81

Swva - How long would you say you had the pain before noticing the tremor?

I had back pain for several years prior to my diagnosis. I just thought I was having muscle spasms. Sinemet has eliminated that pain for the most part. My wrist pain started about a month prior to me noticing the tremor.

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MurrayPD2    219

To answer seriously, I had back pain for years.  I was thinkin it was due to a malformity in my l4-l5 lumbar that I knew could give me trouble.   Then, the stiffness spread to my shoulders and neck, causing more pain.  Then my left foot started cramping up on very short walks; which added more pain.  It hurt to even open door across my stiff neck and shoulders.  I got a SCS for my leg nerve pain, but once I took PD meds, 80% of my pain went away.   Of course, I had bradykinesia mainly.  I have some postural tremors in my L hand and just random tremors in my L foot with painful toe curling on occasion.  Overall, much better now.

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stump    452

They say pain is not a symptom of PD, but PD causes muscle tension and stiffness, which results in pain. Pain in my wrist preceded me noticing the tremor in my finger. I believe I was tensing my muscles without realizing it.

My MDS said it was typical in PD to have pain vs ET that it's not.

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BillBRNC    25

I guess I have all the pain, discomfort, whatever in all the usual places, which is most of the places. I find the word "pain" to be difficult to define, because I've always tried to ignore pain in my life. I think of it more as uncomfortable. But I have real pain in both sides of my butt from these Parkinson things, standing or sitting or walking or sleeping or anything. But what the heck, I now have a better appreciation of what it means for something to be a "pain in the ass."

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GypsyGold    2

Whomever stated that PD isn't a particularly painful condition should shuffle a day in many of our shoes. Seriously ignorant and sadly, probably a Neurologist or MDS. Unbelievable and makes me incredibly concerned that our PD pain is merely fobbed-off when the disease is so similar to MS or MND well known for their agony. My PD experience is little but pain of varying types round the clock, years of it. I'd say for me, the pain I get from my sudden freezing gait is horrific - from toe to butt plus the rigidity of muscles & dystonia wherever. I hurt even when trying to sleep. Trying Norspan 40mg patches but having little effect. Seriously hoping medical cannabis will be permitted in due course to see if it resolves the pain. Constant pain is exhausting. 

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johnnys    460

I might have come on to something for my dystonia and the jerking I  switched brands of c/l and the jerking slowed considerably.Its been three good days so far.

Another possible  consideration for this improvement was more sleep a good 9 hours.

Have any of you experienced similar experiences?

thanks

john

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adams234    238

Hey, Johnnys

What brand you using for C/L? I was taking sun pharma and found that to be very quick to act and I had less issues with restless leg and twitching. Now my pharmacy has switched back to teva and the twitching and restless leg is back.

 

Thanks

Edited by adams234

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