Friday, December 12, 2014

Thursday's Tumbles and Stumbles ~ Botox Troubles

Today's "Thursday's Tumbles and Stumbles" has to do with the side effects of Botox injections. They are miserable! After the last round of my Botox series, I suffered through flu like symptoms without a fever for a couple of days. I thought that would be the worse I would experience, but I was wrong. It was only the beginning.

It started about the week after my shots on the 25th. My series was done on the 20th. I was in a therapy session with my OT. It was just a vague achy feeling. What I like to call my-rode-hard-and-the-day -after. If you've ever pushed yourself past your level of endurance, woke up the next morning, and everything causes you pain, that's it except I didn't. I had a hangover without touching a drop of liquor. Sounds totally unfair, doesn't it?

Don't get me wrong. The Botox injections were working. Where I was getting 15 degrees of motion prior to the series, I got 75% movement and it was still an early return. The next week I got 90% of normal range or at least everything at mid line. This was fantastic and if I had felt better I would have been happy.

But I didn't feel well. My bladder response, have to go urge, was three minutes. There was plenty of time to get my AFO and shoes on, and make it to the bathroom. The response time after Thanksgiving weekend dropped to three seconds. That isn't enough time to turn around good, or even get up from a chair before the urine was pouring past the pad, past my underwear, and down my legs soaking my pants as it went. Definite signs of a bladder infection for me. I called my GP and got a prescription for Macrobid, an antibiotic.

But my body aches continued and intensified. I kept telling myself that it was just a flare up of my Fibromyalgia. I wasn't running a fever so it seemed like a logical judgement. I took a pain pill each night because I can't care for my hubby if I take it during the day. My left (functioning side) arm all the way down to my fingers and my leg started with muscular spasms. Not as painful as a charlie horse, but just enough pain to make me stop and say ouch.

But, my hip and spine were the worst on my right
nonfunctioning side. I will remind you that I have rods in my lower back and an artificial hip on that side. It was like the muscles were trying to move the immobile objects.I mentioned in another blog how I have to squeeze my gluteal muscles to engage my hamstring to take a step. Except now that these muscles were in constant spasm, my gait was off and the Botox relaxing the muscles around my peronal nerve, walking across the room was a problem. Bending over to pick something up off the floor was like playing Russian Roulette with my balance.

Then the wheezing started. At first it was only in the morning, but progressed into all day thing. I was having to use my steroid inhaler twice a day instead of as needed for my allergies. I was developing a head cold too. It became increasingly difficult coughing and clearing my upper respiratory track. Not to mention, the stabbing pains running through my back and hip with each cough. The stuff I coughed up was normal colored.

All this caused my heart to race more than usual. Which in turn caused me to take more
medicine to slow my heart down. I was also even more tired than usual with the added nonstop exertion. I was swelling up faster than my Lasix could handle. By swelling I mean abdomen looks like I'm six months pregnant, leg (defunct, stroked side) has major bulges on either side of where the straps are, and even my fingers. Not as bad as when I'm in congestive heart failure but close. My daily naps became a twice a day effort to have enough energy to make it through the day with the things I had to do until bedtime. Even still, time and time again, sleep was often interrupted by coughing fits during the attempt.

Through it all. I never ran a fever. Puzzled, I ran a search for answers on my computer. I had no idea which of my doctors to call...heart, arthritis, GP, allergist, or neurologist? Of course this decision making process happened on a weekend, doesn't it always? But it gave me time to make the decision. All the searches came up flu, except there was no fever or maybe an allergic reaction. Well, my memory told me that so that narrowed the field down some.

I recalled some of the side effects to Botox so I researched it. (Ding, ding, ding) we had a winner. Every single thing that was going on was listed under side effects of Botox. So Monday I called my neurologist.  The nurse practitioner suggested an antihistamine, but checking my chart she realized that I was already on three (pills, nose spray, and eye drops). So now begins the wait until my appointment time next week.

I'm actually concerned that the Botox treatments will stop because of the side effects. Without Botox, I'm destined for a life of pain and spasticity. Nobody, meaning researchers, have found the cause or cure for spasticity. This scares me because it hampers me more than my obvious disabilities. I've dealt with chronic pain for most of my adult life, but it's nothing compared to the pain I feel with the spasticity. Yes, I spent months in the beginning waiting on the approval for Botox, but the spasticity is far worse than two years ago with more muscles involved. I wouldn't be facing months but years of it with no reprieve.

So that's my stumble for this week. My darling hubby's condition has stabilized once again, or at least nothing critically or disastrously wrong happened. Thank God! I've had enough to deal with. How has your week been?


  1. I don' understand why researchers say spasticity is not real. I hope you feel better soon.

  2. My week has been ok, not great. My mother-in-law has FINALLY decided to move to an assisted-living facility. She has dementia, trouble managing her prescriptions, and is quite unsteady. We spent the week in western NY state, packing some of her possessions and organizing the papers covering every horizontal surface. It's hard to invade someone's privacy like that, but she can't do it, and she has run out of horizontal surfaces.

  3. Rebecca,
    They used to say Fibromyalgia wasn't an actual physical condition too. Researchers need to do real research. Ask anyone who suffers with it or any therapist who works with spastic clients and there would be no doubt.

    Hugs coming your way.

  4. What a crazy week! I hope you and your doctors find a solution soon!


I love to hear from you! Agree, Disagree, matter. Even if it's to say you were here.