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New normal

Extreme muscle tension. Dystonia?

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New normal    1,268

Hi guys..

i saw thread on muscle tension..which has been a problem in right leg for monthes.  Tried everything.  Muscle stretching daily.  Now thigh muscle will get rigid and rise about 1/2 inch..looks like a board...stretches tendons from hip and groin...and from knee.  The cramping extends to calf...until entire leg is one huge "charley horse".  Pain is indescriable.  

I'm away from home, neuro would not prescribe.    3 ER trips...MRI, CAT scan, Ultra sound, steroid IV, hydraoxycodone.  Nothing helped.  Soft tissue attachments were so painful, I barely could,walk...and acute spasm episodes  intermittent.

Answer : (dont try this at home). I swiped gabapentin from DH.  It works!  I googled it alot..and was desperate.  I could not believe that a condition which exhibited dramatic physical distortion.....and PAIN...could come from the brain!! I cannot wrap my head around it...it just does not match with anything I have learned about body function working with DH in chiro practice for 30 years.

So called neuro..reported history...and he prescribed gabapentin.  I was experimenting with doseage...too much made me woosey.,,, his prescription now is working after 3 days...no cramps...just soreness from past distortion.

Hope,this helps someone..  so, guys, IS THIS DYSTONIA??

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Linda Garren    725

NN, I don't know, but it does sound like h_ll!  Awful, awful.  I''m so sorry, and for it to have been so severe and for so long--I just can't imagine how you stood it.  Will you be able to stay on the meds until you can find a doctor who knows what is going on and can hopefully help you? 

Have you contacted our Ask the Doctor section here?

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Linda Garren    725

Here are some fellow sufferers, though I'm sure you've searched for same on your own.  One mentions using quinine, and I remember somewhere on our forum someone saying he used that and that it helped (but don't remember if it was for the same problem......)

https://patient.info/forums/discuss/upper-thigh-muscle-cramps-216352

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New normal    1,268

I am comfortable in having Gabapentin control spasms and conclude it is PD related.

i,hope others can benefit.

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MrFritz    109

Hi New, Sorry to hear about your new issue. With PD, life isn't going to be boring.

I was on Gabapentine for Neuropathy. It made me feel very tired and I lacked a normal level of concentration when driving. Bad stuff. I switched to Lyrica. Works well for me without making me sleepy. Warning! It's very expensive.

Fred

 

 

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New normal    1,268

Thanks Fred,

I am so grateful for gaba's help the excruciating pain, I wd take fatigue as a side effect any day.  Literally, thigh muscle raised up and went into a board like form...tearing all tendons with it.  As,Gaba wears of it resumes.   So far, I havent noticed more fatique.  Dr Google says MSA has dystonia like that... so there ya go...it is what it is.  

I am glad to hear from you Fred and that you are still in the fight.  Keep swimmin'.  👍

NN. 

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Beau's Mom    1,046

NN, yes, this is dystonia. I had an adverse reaction to gabapentin, so no relief there for me. I use Baclofen, which helps the dystonia in my stomach. So glad you're feeling better.

Dianne

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jul    3

Thank you for sharing.  I have a much milder (but still really annoying) distonia.  I will keep this in mind.

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Linda Garren    725

jul, always enjoy the precious picture of the kitties and the caption you put that is just perfect, It's cut off in this picture, and I don't remember the exact words.  Can you remind me?

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New normal    1,268

 

RE:  dystonia.  Well...as Fred says, PD is never boring...so here is the REST of the story.  WARNING: no one heed my previous experience re:  gabapentin.  I should have known when Diane, the most stable of beings, issued her subtle warning   So, I was doing great with gaba.  I took 300 mg gaba with each l dopa dose...total 1500 mg gaba a day...well below the max Dr Google stipulates...and within my neuros guidelines. 

It didn't take but days I was looking forward to the next dose...even to the point of spouting, "Yay, its Gaba time!".  I was so relieved from pain, I thought I could compromise my adamant anti drug mantra. Nothing that good could last forever.  Very soon I noticed emotional swings, and personality issues.  More research showed Gaba is very addictive and can require a difficult withdrawal regimen. Even worse, Gaba can interfere with brain chemicals to cause more irregular l dopa assimillation (as I understand ) and may accelerate Alzheimers..... but not always.     "Everyone is different" 

I've stopped Gaba.  Some of you may have seen Dr Okun answer to my question if my muscle spasms are more likely PD or MSA.  His cryptic answer was the dystonia I described is not likely PD.   I've resumed daily stretching with an exercise ball...even while on our bucket list trip. 

On a personal note, I drove Big Blue today (our HD trike)..short run to swap vehicles, but included unfamiliar 4 lane traffic, steep hills, trucks and motorhomes. I pulled aside, parked.  Called DH. I was beyond capacity.  In nearly 50 years never a motorcycle accident.  Tonight, as right bicept clenches in tandem with right leg I know it is time to move on.  Hmmmm...two wheels to three...now its time for four wheels to touch the ground...sports car??  with an automatic....smile...

On a very serious note, I counsel everyone to reconsider their bucket list...whether it is a motorcycle ride or a walk in the park with a loved one....a favorite memory written to a grandchild......if it is worth doing.....your passion or theirs.....It is my hope and prayer each of you has the opportunity and strength to accomplish it...and then...have the wisdom to know when to change...to accept....to grieve.... to move on.

NN

PS. To forum members who are confused by my divergent posts...from having painful dystonia in two limbs to riding motorcycles, I understand how perplexing it appears.  Or how I can write and speak with some coherance, but now am not trusted to get out of a grocery store.  Yep, that is the face of PD.  That is me.

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