Re: Advice about pain, disability, etc...

[Guest guest]

Hi Therese,

 

Thank you for your post.  I was interested in the Panadol Osteo, so looked it

up.  It's called Acetaminophen (or Tylenol) in the U.S.  It's available

over-the-counter (no prescription required) and is inexpensive, so may be a

good solution for many.

 

In the US, it's also added to hydrocodone to form Vicodin and Norco. 

 

One of the primary concerns with it is liver damage.

 

Last year, when I was in severe pain from my back and taking Vicodin every

few hours, my doc switched me from Vicodin to Norco, because it has

less acetaminophen in it.  (I take other medications that can impact

the liver, so I needed to be very careful.)  For me, the Norco was more

helpful than the Vicodin with the severe nerve pain radiating down the leg from

the back.  Fortunately, post-surgery, I don't need either one very often

anymore.

 

My biggest problem right now is my hip, which is deteriorating and needs to be

replaced soon.  I'll try plain Tylenol and instead of the Norco on bad days

and let you know the results. 

 

For long-term users of acetaminophen, liver function tests (a simple

blood test) can be routinely performed every few months to make sure all is

fine.  For all users, exercise care not to exceed dosage instructions.

 

From: thereseclark@... <tesso73@...>

Subject: Advice about pain, disability, etc...

Date: Tuesday, January 11, 2011, 8:22 PM

 

Hello everyone,

I am 37 years old and have CMT3 (Dejerine Sottas syndrome the most severe form

of CMT), I was diagnosed at 18-months-old and have had progressive neuromuscular

deterioration throughout my teenage and early adulthood. I have been unable to

walk since I was 15 and in the past 5 years have had significant muscle wastage

and am now unable to use my arms and hands (I use my computer through dictation

software called Dragon NaturallySpeaking).

I have had scholiocis at age 15, and I now rely on a breathing machine (bi pap)

to assist with breathing at night while I sleep. Generally my peripheral nerves

are not communicating with my muscles and I am suffering from increasing

respiratory stress now as well.

Over the past 3 years I have developed neuropathic pain and I have tried Lyrica

and Neurontin as well as a number of other stronger drugs, however I have found

that the side-effects of these drugs including extreme fatigue/drowsiness and

inability to control my bladder meant that these drugs were not a suitable

option. Also I did not find the pain relief significantly beneficial.

From my experience the best pain management results I have had for the intense

neuropathic pain which I have in my right foot and leg (symptoms include extreme

electric shock/burning sensations which can also feel like my foot is in a vice

being twisted) has been a constant 3 to four hourly dose of Panadol Osteo which

was originally recommended for my osteoarthritis in my hip joint.

I take one tablet every 3 to four hourly and this controls the pain

significantly (although not totally). I still get occasional sharp spasms every

day, but these are momentary and quickly pass, whereas without the Panadol Osteo

the pain is frequent and longer lasting and I am often unable to sleep at all or

concentrate during the day.

I know that many CMT sufferers experience significant pain and it is always a

challenge to find a balance between the side-effects and pain management, but

for me Panadol Osteo has meant that I have no side-effects and am able to

function from day to day with manageable pain levels.

This may be an option for many of you guys to try, and although it sounds like a

simple remedy, it has taken me many months/years and a number of doctors

including my neurologist, physician and GP to finally settle on a drug which

from the outset is probably not the initial first choice for severe pain. My

advice though, after trying many of the stronger drugs, is to give it a go and

see if it works for you if pain is a problem.

Hope this helps. Keep me posted.

Regards

Therese (Brisbane, Australia)

[Guest guest]

Hello ,

Thanks for the interesting information about the different medication options.

For me though I have been told that the risks of long-term liver damage is the

least of my likely future problems.

A month ago when I saw my respiratory specialist he basically said that because

of my muscle wastage my life expectancy is not good.

Especially now that I am having to struggle and work so hard just to breathe.

Pain management and being comfortable is a priority for me at this stage while I

am hopeful of a cure/healing in the near future.

Regards

Therese

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[Guest guest]

Oh, Therese, I'm sorry.

I am here to say that pain management and comfort are priorities for me as well,

but I have been able to improve every system in my body through the use of yoga,

or specifically Yoga Tuneup. Google it, and you will find that Jill has

been chose Yoga Teacher of the year for 2011, and my story is about 20% of the

first half of a two part article.

Here is the URL. My story starts about 2/3 of the way down.

I have improved strength, balance, coordination, proprioception, and, as Yoga

Tuneup very much concentrates of breathing and working on increasing breathing

capacity and efficiency by exercising the diaphragm and surrounding tissues,

including the pelvic floor and all the sphincters, in ways you may not be able

to imagine.

I have stopped taking prilosec for acid reflux, as it is gone, as is 40-55

ponds, depending upon what date one picks for the start of my weight loss and

how much extra muscle has been built, especially in the lower legs, ankles, feet

and toes.

I stopped taking flomaxx for frequent urination, and there is now a pronounced

fluidity of motion which was not there 2 years ago.

My point is is that it is CMT is not an inevitable downward slide. There are

periods where one has difficulties, but other times we things get easier.

If you are working with a " fighting a losing battle paradigm, may I suggest, as

hard as it is, to try and look at your difficulties some other way. Ir does seem

your doctor is operating under such a paradigm.

And in this case, I think it is time to seek out a second opinion.

That is just my two-cents worth.And I hope it helps.

[Guest guest]

Thanks for your comments.

It is always good to hear of the positive outcomes that other people are

experiencing with different treatments.

I think it is terrific that you are having such success with Yoga. I have a

friend who is a Yoga trainer and although she is 60+ she does not look much

older than 40, so I have every confidence that it is a very beneficial

treatment.

I took a look at the yoga exercises on the Internet, however unfortunately most

require some degree of physical dexterity and I am not able to move or lift

myself or my limbs at all any more independently, so I am not sure that this

treatment would be practical for me at this stage (definitely more an option for

me about 10 years ago) if only I had known.

Anyway, thanks again. This is what networking is all about. Providing valuable

information and sharing experiences.

Regards

Therese

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[Guest guest]

Hi ,

Do you go to classes or do the at-home program?

The classes closest to me are at least 40 min away and with this active winter

weather pattern we've been having, that might be too far.

Thanks,

>

> Oh, Therese, I'm sorry.

>

> I am here to say that pain management and comfort are priorities for me as

well, but I have been able to improve every system in my body through the use of

yoga, or specifically Yoga Tuneup. Google it, and you will find that Jill

has been chose Yoga Teacher of the year for 2011, and my story is about 20% of

the first half of a two part article.

>

> Here is the URL. My story starts about 2/3 of the way down.

>

> I have improved strength, balance, coordination, proprioception, and, as Yoga

Tuneup very much concentrates of breathing and working on increasing breathing

capacity and efficiency by exercising the diaphragm and surrounding tissues,

including the pelvic floor and all the sphincters, in ways you may not be able

to imagine.

>

> I have stopped taking prilosec for acid reflux, as it is gone, as is 40-55

ponds, depending upon what date one picks for the start of my weight loss and

how much extra muscle has been built, especially in the lower legs, ankles, feet

and toes.

>

> I stopped taking flomaxx for frequent urination, and there is now a pronounced

fluidity of motion which was not there 2 years ago.

>

> My point is is that it is CMT is not an inevitable downward slide. There are

periods where one has difficulties, but other times we things get easier.

>

> If you are working with a " fighting a losing battle paradigm, may I suggest,

as hard as it is, to try and look at your difficulties some other way. Ir does

seem your doctor is operating under such a paradigm.

>

> And in this case, I think it is time to seek out a second opinion.

>

> That is just my two-cents worth.And I hope it helps.

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