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stump    452

I'm starting to get a little rigidity when my meds have worn off.  It's one of the ways I know I'm overdue.  Mostly it's a stiff leg or a stiff forearm.  But it's still not very bad even if I'm way late on meds.

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New normal    1,273

Thanks, Stump. I didn't know if it feels like leg won't move or if there is cramping. I have pain & tightening in tendons in groin area.  I stretch for nearly 3 hours a day, but that isnt working as well any more.  Now other leg  is feeling same way. Without meds both legs get resistant to bend.  hard to tell if it just aging or a PD symptom. It seems resistant to stretching exercies now.  Just wondering if this is rigidity.

best to you

NN

Edited by New normal

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MurrayPD2    219

It starts in my left shoulder and left hip, then the left arm and left leg, and it will get worse the longer I wait; which also causes back pain.   My off times are not good.  The joints can get resistant to bend. When I was diagnosed, my fingers were constricted and my left arm would not straighten out.  My left foot would not lift or adjust well, it would respond by cramping if too much stress/walking was demanded.  I respond to stretching fairly well, more when I am on C/L; then they can sometimes release and pop in ,my hip and back.

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New normal    1,273

Thanks much  for response.  Yesterday, DH awoke and could not move. I didn't  know if it was stroke or what.  Eventually I helped him stand up...but his knees wd not bend for him to walk.  I gave him baby aspirin and was going to call 911...but with vigorous massage his legs moved & he could walk  after anout 30 minutes.  Still we don't know what that was about...it might have just been extreme fatigue cuz he has been working extra hard to go on our "bucket list" road trip.  We are now delaying trip and flying to Michigan for grandsons grad.

Does rigidity ever act like that?  His left hip is very painful and now he is cramping in left leg throughout day.  He also stretches daily..mostly cuz he wants to be able to ride his Harley trike (smile).....( we r still fighting...but seem to be working aginst the tide)  He has neuropathy in legs ...atypical of PD....which neuro says is likely to agent orange exposure.  So guess we will be seeing more "atypical" things.

with me, if I stretch with exercise ball everyday for at least 2-3 hours, I awake and can walk pretty easily.  Lately, muscles tighten early in day and eventually leg stiffens..and upper thigh tendons hurt like heck to point I have to use cane. Rigidity?

it is helpful to know stiffness responds to C/L.  I should increase, but am trying hard not.  This topic is not discussed much..and research doesn't really define it.  

Thanks so much for info.

 

 

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New normal    1,273

Ok, folks...have read alot from Dr Google...changed exercises...tried supplements like potassium, calcium, magnesium...."rigidity" or "stiffness" has now evolved into the most awful debilitating pain of all time.   All you former athletes and/or smart people please advise.

Twice the thigh, groin, calf pain has increased to "charley horse" level...but entire leg is in constriction and pain...tendons are tight..and even with generous adipose tissue, the thigh muscle is obviously in spasm.. During the worst times, knee and ankle are tight and hurt.  Other than those two times, pain and cramping come and go.  I have noticed I think it is worse as I come down from meds.  There are times with little pain...giving me false hope that I'm cured.  I am so grateful DH is a chiro who can work the spasm out...but if this happened in public I'd be humiliated...I've had 5 unmedicated births...have a high pain tolerance and generally can manage any pain situation...not this one.

So...am I experiencing the "D" word??....dystonia??

NN 

PS:  This could mean a "no" to kayak and trike.....🙁

 

 

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Quietstill    450

Rigidity.  Sigh.  DH has non-tremor PD; combined with RBD.  He does Rock Steady boxing (that helps with mental acuity), does Tai Chi (flexibility), and deep tissue massage (again flexibility).  Number one is call your MDS. 

PD ain't cheap.  Rock Steady, Tai-chi, massage aren't covered by insurance.  Neither is Acupuncture (once a month) which I don't perceive as making a difference, but he does, so I encourage it.  If you can afford it, find a good massage therapist and go 2x a month.  It will be painful, but it has made a visible difference here.  Think about one major PD sign: Cog wheel rigidity.  It is called that because your brain activates a muscle, and motion is completed.  However the 'release' command does not fully go through, leaving that muscle contracted a little more than it was before the action was initiated.  And so, throughout the day, the muscle remains tight, and ratchets tighter every action.  Hopefully it fully resets and smooths out when you are relaxed and asleep.  My DH ratchets tight his middle back, hips, and shoulders.  Sometimes his hands will turn bloodless and white and cramp.  Is this dystonia?  Hard to say.  I do know when that occurs, if I work on his upper arm, near the armpit where the ulnar nerve passes by, there will be a knot of rock hard spasmed muscle.  If I can get that to relax, his hands 'pink' up and the pain goes away.

My friend who had terrible dystonia in both feet (bedridden) was greatly eased by massage.  I hired a massage therapist to come in and show me which muscles were involved. and how to address them.  Her 'knots' were in her inside calves, right where the calf normally starts to round out, above the ankle.  After 2 weeks of my working on her, 15 minutes a day, her pain lessened quite a bit, and her feet were twisted only occasionally, rather than most hours of the day.  Over in the UK, they do a lot of massage for PD.  We don't here.  If I was forced to drop all but one of DH's therapies, the one I would keep was the massage.  Call your Doc, explain the situation, and see if the MDS has ideas.  If not, good luck, and try to relieve what you can..

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pdmanaz    48

So with increasing symptoms do you increase meds ? How long do you wait to see your MDS? I mean what do you do?

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New normal    1,273

 

 

14 hours ago, pdmanaz said:

So with increasing symptoms do you increase meds ? How long do you wait to see your MDS? I mean what do you do?

Hi PDmanaz,

Thank you for your participation...now, first, u understand we are all different and few of us are medical professionals.  When I joined the forum, I wanted to know how PD evolves...and I wanted true anecdotes.  Thru the years, I have learned that one must be very careful interpeting symptoms of others and remedies.

However, it is interesting to share info to enlighten...not necessarily solve.  I tend to over analyze and over think everything...which is getting more difficult as my "thinker" isnt the same as before. I have learned PWP and especially care givers have life experience not found on Dr Google.

To your question, what do you do?  When a new symptom arises, I start analyzing...trying to determine if it is PD or not.  I am 70, so most aches and pains, cognition,  and unusual autonomic things are natural. I research, and "wait it out" to see if it is transient...or if I own it.  Now....many PWP will adjust their med regimen according to their symptoms or environment...adding or subtracting doses til symptoms relieve.  I don't do that normally.  I have at times gotten very symptomatic in an environment I can't change...I will,take a C/L.  My first line of defense is change the environment.

My thinking: this spasm episode is so off the charts, I know I need intervention.  I have to try to identify it before going to MDS as I don't want to mis represent the symptom, and start taking another PD med. So, after all attempts to solve it..the nxt step,is HERE....inquiring of the forum...and look at the great input I have received, PDman (sorry I shortened your name...but it makes me smile), 

This a long answer, typical of me...but your question brought back memories of pre PD or initial PD.....PD is a huge universe..but soon we all find our tracking...stay with me PDman ( this is gender neurtal)....and lets learn together ...as hopefully we get more discussion.

NN

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New normal    1,273

Quiet still,  thanks for your response.  Very helpful.

Do I have this right? :  1. Rigidity is when a limb will resist movement..even if someone pushes on it.  The limb will actually feel it is pushing back.  2. Spasciity is when muscles will contract and seize for a period of time. 3. Stiffness is when it is difficult to move, but it will eventually resolve after exercise. 4.Dyskinesia is when a limb or body part moves in an uncontrollable unnatural way.  5. Dystonia is like an extended cramp.  It could be toes curling...or arm bending.

Sigh...methinks it is dystonia.  I stretch every moment I can.  Both shoulders have ratchet sounds.  They keep moving as long as I stretch every day.  To your suggestion, I am having a 90 minute deep tissue massage tomorrow And resuming water exercise.  This could atill be an issue that will resolve itself.

So....with PD, the brain misinforms muscles because of dopamine reduction.  HOWEVER, we can offset and delay with exercise and alternative therapies. I think I get it.  Just don't know how I can control a screaming episode in Walmart when leg goes for a walk by itself! 😳

QS, thanx again.

NN

 

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