Mon Mar 17 to Sat 22nd:
Rather than bore you with the day to day details this week has been a very
tight week. Started out with tight, back, arms and legs. The nose gets stuffy
and my ears ring and the eardrums vibrate which is uncomfortable. Even swimming
was a problem. The leg muscles are so tight I have to work to bend and
straighten my legs. I walked from the bathroom to the bed a couple of times.
That really tightened everything up for bed. If I don’t move at night I don’t
feel the tight muscles until I move in the morning then bam, it’s all back
again as soon as I move. Went to coffee one morning and sat in the manual chair
for 1½ hours. Got home and the back pain was at about an 8 out of 10.
Since I was getting so tight/toned, I decided to restart to
nabalone, again which is synthetic marijuana. We took it out because we don’t
think it was working so we put it back in on Friday as I getting a little
desperate about the muscle tone .Took 1 gram tablet Friday at noon and at night
and then one at breakfast and at noon on Saturday plus a ‘relax’ pill and some
hydromorphon. Saturday was a very strange day. I was tight/toned when I got up in
the morning. I felt more tingly/burny than usual. Did karate class and
tightened up some more after a very short walk. When I got home I did the
stretching drills in bed to try and loosen up. It didn’t work. At about 2
o’clock I started to feel different. My ears started to ring louder and
vibrating ear dumbs picked up and it felt like all my muscles were being pulled
tighter and tighter. My eyes also started to go in and out of focus which made
it hard to read the screen. Had supper and ate but I really wasn’t hungry. Still
feeling strange after supper and as I write this blog the print is fuzzy. I
have a strange feeling on the left side of my head, not really a headache just
feels like some pressure there. It’s not a stroke, I stuck my tongue out and it
came out straight, so no stroke.
All my muscles are tight/toned and feel like they are being
pulled tighter and they are tingly/burny particularly the legs above and below the
knees. Wish I had something good to report but not being able to any exercise
has really got me down, no gym for 2 weeks, and no bike and now I won’t be able
to go to therapy. Okay, I just feel like shit. Going to bed catch you in the
morning.
Sun Mar 23rd
to Wed Mar 26th: Felt better in the morning. Still so tight/toned
that I’m not going to the pool or riding the bike or walking as it seems that
any exercise tones me up. It is particularly aggravating because it tightens up
my rectum and I can’t poop. If I take enough pain pills to relieve the pain, I
get very constipated. Don’t know what’s worse, constipation or pain. Perhaps, I
should try the bike for just 3 minutes to keep some leg muscles working. I am
finding that since I am not doing exercise and not using my legs by the time I
get into bed at night my feet are like ice cubes.
Yourleg muscles help the blood circulation in your legs.
When you walk or stand the muscles contract and then relax. This contraction
and relaxation helps pumps the blood to and from your feet. Since I am not
moving and the muscles in my legs just contract they don’t help move the cool
blood away from my feet. I get ice cold feet. No muscle contraction/relaxation
in the legs = poor circulation. In the past the right foot has always been
colder than the left foot, now for some reason it has switched. Lying in bed
seems to warm them up, guess with the legs lying flat it allows the warm blood
to get down there and the cold blood to move away from the feet with no help
from the muscles.
Monday, I had the
ultra sound on my stomach and got a Dr.’s appointment in the afternoon. The
ultra sound didn’t show anything abnormal. I had extensive blood work done and
it all came back normal. The Dr. doesn’t know what to do with me or what to
look for. He said he’d talk to the Dr. at Parkwood. I have the uneasy feeling that
this is the progression of the condition. Exercise causes muscle tone.
It’s even tough going for coffee and sitting in the manual
chair for an hour or so. It is very hard to speak has I have trouble sucking in
enough air to speak and by the time I get home I am a real mess.
After lunch Darcy and I did about 20 minutes of stretching
and used the back massage vibrator on my back and legs as vibration is supposed
to relieve muscle tone...2well it doesn’t, at least not yet. We’ll do it again
around 3. Another issue is my mouth dries, out. It’s not from breathing through
my mouth but my face and ears get tone up and my salivary glands don’t make
spit anymore and that can last for several hours. I much prefer the old hangover
day’s dry mouth to this.
I am painting and I am going to finish this one come hell or
high water. My biggest complaint is that I haven’t got the tone correct. The
dark areas are too dark and some of the light areas are to light and some are
too dark. I use a lot of colour straight from the tube which is a no-no. I
haven’t figured out how to correctly tone colours down with white paint. I
don’t quite have the colour knowledge to tone colours up and down with other
colours. For example, what colour do you add to yellow to tone it down? Can’t
add white as that makes it brighter. Guess practice makes perfect. I do have
trouble doing detailed work such as drawing tree trunks, branches and any other
fine details, such as adding fine highlights etc. As they say some of the best
art is actually from making mistakes, so I’ll have some very good pieces...lol!.
Given the muscle tone, I can only paint for an hour or so and that’s not long
enough to get the right side of the brain, the creative side of the brain tuned
in. The painting is about 75% finished. I’ll keep plugging away at it.
Mar 27 to Apr 6
I really don’t like what is going on every day my muscles
are in spasm. My legs, arms, back and stomach are all turned on. The pharmacy
changed some the drugs from brand name to generic. We will try to get them
changed back. Generic drugs can be as
low as 90% of the brand name drug. I take 120 mg of baclofen daily. That means
I could be missing up to 12 mg of baclofen a day. Only about 1% of the oral
drug actually gets through to my spinal cord so I need all I can get. We’ll get
the Dr. to straighten that out.
As mentioned, my rectum tightens up and I can’t fart. There
is a buildup of gas which causes pain which causes the muscles to tighten up
and around and round it goes. If I exercise that is any exercise, walk, ride
the bike or go to the pool it tightens up everywhere. After just 3 minutes on
the bike my rectum is so tight I can’t poop at night which means I have an
intestine full of poop that causes pain and I tighten up more.
I have had to cancel therapy because their goal is to get me
walking and I have so much muscle tone, I am unable to walk.
I saw the Dr.at Parkwood on Monday, Mar 31. I had the Botox
put in my arm and then had my 6 month checkup. I was in bad shape, very tight/toned
everywhere. He hooks me up to an oscilloscope to tell when the needle is in the
right spot. There is a lot of static and he mentioned that if it was on his arm
it would be silent. The static is from my muscles being on all the time.
We talking about my muscle tone and what could possibly be
the cause. As mentioned muscle tone or muscle tone overflow is usually caused
by something visceral...intestines, bladder. Whenever I have gas or can’t poop
I get a pain in my abdomen about where my appendix is. Now here’s a great
example of this. On Thursday night I didn’t have a BM. I was a hurting puppy
all day Friday.
Tight/toned everywhere and a pain in my low right tummy. Put
the suppository in as usual and went for a poop. It wasn’t a real big one
considering it was two days accumulation. I know this is too much info but this
my reality. There was a lot of gas that I had to force out. Thought I was finished and got into bed. I was
still very tight and very uncomfortable and had a sharp pain in the lower right
tummy. Took some pain meds but that didn’t help. My nose was still plugged up
and my mouth was dry. At about 10:30 when Darcy was heading for bed she rubbed
my lower stomach in a clockwise direction which is supposed to help the bowels
work. Well it did work. After about 5 minutes I had to go on the john and had
another BM. The pain in the tummy subsided and I was able to get to sleep.
Back to Monday with Dr.
Mentioned the bowel problems and he said he’d send a note to my family
Dr. to have a scope to see if there is any problems up there. Geesh, can’t wait
for that. The other thing we talked about was a baclofen pump. Since about 1%
of the oral baclofen gets to the spinal cord they would put a pump in my tummy
with a line running around to my spine to but baclofen directly on my spinal
cord...yikes! I would go to UH and before they put the pump in they would
inject various amounts of baclofen into the spinal cord to see what dose would
work. Once the pump is in they would adjust it to the right amount. The pump
holds enough for 2 to 6 months.
The other thing we talked about was my back pain which could
also contribute to my tone. He suggested that I have some steroid injected into
the facette joints in my spine. Those are the little joints between the
vertebrae.
The other grabbing at straws thing we did was to do with
olanzapine which I started in the hospital for depression. We took it down
slowly as you can’t go off it cold turkey. It stopped the last week in February
and that’s when I started to tighten/tone up a lot. Did some google research
and found that in a study of 12,000 patients olanzapine stopped muscle tone in
29 of them. Not a big number but I may be in that group. I am back on 2.5 mg of
olanzapine for 3 days now but no noticeable effects.
I’ll have the scope and the steroid injection into the back
and if the scope doesn’t show anything wrong with the bowels I guess it’s give
the baclofen pump a try.
It is getting quite boring as I can only ride the bike for 5
minutes a couple of times a week. Haven’t been in the pool for 2 weeks. Talked
to Stephanie, the physio at Parkwood and my therapy is on hold until we get
this thing sorted out. Must be careful with the muscle tone as the muscles can
pull so tight they start to pull the ligaments off the bone...don’t want that
to happen.
Oh yes, we went to Motion
Specialties on Monday, after lunch at Cora’s to see what they can do about my
manual chair to make it more comfortable. He moved a few things around and put
a lumbar wedge in the back of the chair. When I go for coffee in the manual, I
can’t sit for very long as my back starts hurting a lot. Right now I am sitting
in the electric and we use the same back and seat from the manual. We moved the
wedge a bit and my back is just killing me right now. Darcy is downtown, I will
get her to move it or take it right out cause it sure ain’t working in this
position. The chair fitter from Motion Specialties is coming on Monday to set
me up in the power chair.
Sun Apr 6th: Not a good day. Couldn’t get comfortable in
the chair. Played on the computer and painted a bit. At 3ish, rode the bike for
5 minutes at tension 2 for 1.2 k and a 3 minute cool down at tension 1. A far
cry from 40 minute rides at tension 5, 6 and 7 and 6 minute cool down at
tension 3.That short ride tightened me up so much that I couldn’t have a BM at
8 o’clock. Hopefully it will all come out alright in the morning...
How am I Feeling?
Like shit...but Darcy and I may be
onto something. Tell you on the next blog.
Thanks for listening...
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