Feeling Great On New Medicine For My Spasticity!

I’ve been on Baclofen for three years now since my stroke, for my night-time spasticity with very little success.  Yes, it helped…..mildly.  But even at the highest tablet dose, I was still waking up 4-5 times a night with my right leg & arm in spasms!

I didn’t want to add another, stronger medicine, to the others I’m already taking.

So, on my last visit, after telling my doctor again that the Baclofen wasn’t really working, and I was exhausted from not getting enough sleep, we decided to try another medicine:  REQUIP.  This is a med used for muscle spasms, mostly with Parkinson’s patients.

I was ready to try anything.  So for the last 2 weeks, I’ve been lowering my dose of Baclofen, while slowly introducing the Requip.

The last three nights, I’ve  taken 1 Baclofen (vs 4) and 3 Reqiuip.  And I am so excited to report it’s working great!!!!

The last three days, as the Requip was slowly upped and the Baclofen was taken down to 1, I’ve felt more alert, more “my old self”, with more energy and ready to “get moving”.  Best of all?  I am sleeping thru the night with no painful spasms during the night!

The folks I work with have even commented on the difference in my alertness, energy, and mood.

I’m keeping my fingers crossed that my body doesn’t throw a whammy in there and get used to the med and start spasming again, but for now, I’m HAPPY!

As always, it’s up to the patient to SPEAK UP, SPEAK OUT, and MAKE THE DOCTOR listen!  If your meds, your therapy, your treatment, aren’t working, don’t just “go along”, assuming there’s nothing else.

Today, for now, I’m almost pain-free, sleeping great, and raring to go during the day, all because I didn’t give up and I spoke up!

Will the spasticity ever end!?!???

It’s been awhile since my right foot/leg has claimed the attention of more than one family member.

But, tonight it certainly did!  Earlier today, I pulled a muscle in my back. Nothing major, just one of those “twisted wrong” moments.

So I got out a TENS unit I have.  With my husbands help, I got hooked up.

45 mins later, and ready for bed,  my back felt great.

But…. My right leg/foot DID NOT!

My husband went upstairs first and I followed. Soon, VERY soon, it became apparent that although my back felt better, the nervous system on my right side….. Was ticked off!

With the help (and extreme patience) of both my husband and oldest son, we spent 25 mins of extremely painful muscle spasms & muscle tightening of both my right foot & lower leg.

I am writing this in bed, after all has quieted, feeling as though my right leg has been driven over by a truck. 

And that’s taking the max oral dose of Baclofen! 

I really DON’T want to take anything stronger.  What’s the alternative?

What should I do??¿

Falling After Stroke Is ALWAYS A Possibility! See Proof of My Wonderful Week!

My week sucked!  How was yours?  Monday I had a root canal that left me sore and irritable.  Just as the soreness was ebbing away, Thursday night I fell.  I fell HARD!  I cracked my noggin and bruised my head and right side, (These pics were taken today), four days after the fall!  The dark bruise on the right is on my right thigh.

bruise1bruise2

Then as I was just beginning to feel “somewhat back to normal”, yesterday while our family was eating at a Chinese buffet, my damned temporary crown fell off!  This, of course, meant I had to go in today to have it put back on.  The result?  My head hurts again because I had to lay it back on that darned hard surface of the dental chair, AND my mouth hurts from them poking, prodding and jamming the crown back on.  AND I GET TO GO BACK NEXT WEEK TO HAVE THE PERMANENT ONE PUT ON!

So if one more person asks me “How was your holiday weekend?”, I will just point them to this post!

 

Spasticity: A Pain in the Ass & Everywhere Else!!

From the National Stroke Association:  Spasticity is a condition in which muscles become tight and stiff, which makes movement, especially of the arms or legs, difficult or uncontrollable. Approximately 40 percent of stroke survivors live with spasticity.

Symptoms

Spasticity can cause long periods of forceful contractions in major muscle groups, causing painful muscle spasms. The spasms produce a pain similar to athletic cramping.

Symptoms include:

  • A tight fist
  • Bent elbow
  • Arm pressed against the chest
  • Stiff knee
  • Pointed foot
  • Stiffness in the arms, fingers or legs
  • Painful muscle spasms
  • A series of involuntary rhythmic contractions and relaxations in a muscle or group of muscles that lead to uncontrollable movement or jerking, called clonus
  • Increased muscle “tone”
  • Abnormal posture
  • Hyperexcitable reflexes

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Since my stroke spasticity affects my right side daily.  I take Baclofen, but it doesn’t take away all the pain, stiffness or spasms.  Most nights, I  wake up a couple times.  But sometimes, (like last night), I will wake up four or five times with pain in my right leg & foot.  I will have on/off cramping in my foot & calf muscles, in addition to the ever-present foot spasm.

Some nights I will wake up, sit up, and grab my foot and use a t-shirt or towel to pull the toes up and toward me for 1-2 minutes.  It feels so good to have the foot in this position.

I’ve tried wearing my AFO to bed to keep it in this position, but it’s so uncomfortable.  I have seen a couple “night” type braces that supposedly keep the foot in this position, but I hate to spend money (insurance won’t cover it), order it, and then find out it’s a waste.

Anyone out there tried a night-time brace to help keep their foot in a flexed position with any success?  What have you done/tried for your night-time spasticity pain?

Pain on Unaffected Side

It’s been two years now and I have noticed something interesting.  On days when I am more active, by evening my unaffected side (my left) is really sore.

It’s mainly my left hip & leg, but sometimes my arm & shoulder.  The arm/shoulder I understand.  If I’m really active, that means I’m holding onto and manipulating a cane all day.  But the leg/hip I don’t understand. Since my gait is still a bit wonky, it’s possible I am leaning more on the left side?

wonkywalker

Are They Serious?

I was just online searching different sites about spasticity.

I am amazed at how most articles seem to be written by people who have no clue as to what a stroke survivor goes through in regards to spasticity and pain.

“Take pain meds, muscle relaxant medication, and maybe try different physical therapy techniques and you should be good to go.”

There isn’t really any sense that the medical community has an answer.  When reading all the articles out there, you get the feeling everyone is just guessing, and hoping they “get it right”.

What really upset me though was when I came across one article from a prestigious university that said, ” The way to cure spasticity is to avoid having a stroke in the first place.”  NO KIDDING. ..REALLY?

And they received millions in federal funding for that grand conclusion.

Dealing With Life

I haven’t been writing much on my blog lately.  I have been dealing with the things “life” has thrown at me, and some “things” I have thrown at myself.

The one great thing to come into my life lately is our puppy Emma!  We adopted her from a no-kill shelter organization.  She was only 9 weeks old when we brought her home.  This meant (and still does, but it’s getting better), getting up occasionally at night to take her out, and puppy-proofing the house.  She is growing like a weed and will soon dwarf our pugs.

I am in awe of young stroke survivors who have young children to take care of!!  You have my undying respect and admiration for your stamina, courage, and “stick-with-it-ness”.

The things “life” has thrown at me that I am dealing with lately have been horrible pain at night.  Specifically, leg cramps, or a “charlie-horse”, as my Dad calls it.  I wake 4 or 5 times a night aware that my legs, mostly my right, hurts so bad.  Sometimes it’s in the process of having a cramp just start, other times it’s during a full-blown cramp.

I am trying to lose weight, which means I am also trying to “up” my activity level.  I am wondering if the cramping at night has anything to do with it?  I hope not because I really want to get into better shape.

Here is a quick pic taken of Emma at 11wks.  She is quickly growing larger than our pugs, Myrna (front), Riley (back left) & Scooter (back right).

Emma with pugs at 11wks

Leg Cramps!

I am having a HORRIBLE time with leg cramps, mostly at night, but I have them during the day also. It only affects my right side.  The cramps wake me up 3 or 4 times a night and hurt soooo bad. They affect my calf muscle and also my toes and ankle.

I have tried elevating my legs at night.  I have upped my Baclofen dose by one tab, to no avail.  Has anyone had this problem?  I never had leg cramps before my stroke and hate to think this may be something I have to “live with”.