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Old 06-28-2007, 09:34 AM #21
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Default ALternatives

Sounds like there are non-lethal alternatives to some of this pain - need to look into some of the OTC creams mentioned and also if insurance covers any of the electronic units? I know for my back - the doc said tens wasnt strong enough - mentioned another machine that might work but was very expensive and non-covered - so not an option for now..... for the buzzing legs - David - does tens really help that? The ice is something I can try - but at night cant imgine getting up at midnight and soaking my feet! (my head mybe!)

Its been suggested by several wise members I have genetic testing for drug intolerances - so am going to look into this with my doc as we may be able to find something I can tolerate.... (I'm the poster girl for adverse drug reactions)

So we keep moving forward and hoping to find the right combo for each of us!
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Old 06-28-2007, 04:37 PM #22
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Quote:
Originally Posted by kmeb View Post
...

I know for my back - the doc said tens wasnt strong enough - mentioned another machine that might work but was very expensive and non-covered - so not an option for now..... for the buzzing legs - David - does tens really help that? ...

So we keep moving forward and hoping to find the right combo for each of us!
TENS units can be stronger than you can stand, but the current stays pretty close to the skin. EMS gets deeper, but is better for muscles than nerves.

Interferential units are strong enough and the pulse frequency and wave-form is adjustable for both muscles and nerves. They get much deeper than TENS, EMS, or the ReBuilder. They're not expensive, but the supplies can add up. I got my interferential unit at>>>>> oops, I must have deleted all the links and email to it. This is the unit MrsD recommended, and several links to companies that sell it. My physical therapist uses the IF 4000 when his big unit is in use. It works great:

http://www.medicalproductsonline.org...ential-if.html
(high price - pay by Paypal*)
http://www.med1online.com/pc-12508-2...nit-77719.aspx
(low price...but no instruction manual, and a different brand name. It looks the same as the IF 4000)
http://www.tartangroup.com/store/ite...1&ITEM_ID=1779
http://fitnessproductsplus.com/ecom....25&gotopgnum=1
(good price for IF-4000, with manual and case - pay by Paypal*)
http://www.amazon.com/Channel-Interf...3064954&sr=8-2
http://www.egeneralmedical.com/dual-...tens-unit.html (web site of the company that supplies Amazon...selling the same unit for $30 less than Amazon - pay by Paypal*).

* Paying by Paypal offers very cheap return insurance if you feel more comfortable with that, and Paypal gives you an extra layer of security since you don't have to type in your credit card number again after you're registered with them. That being said, I've had nothing but good experiences with online medical supply vendors.
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Old 06-28-2007, 09:21 PM #23
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Default David, I've tried 'tens' but...

the 'accupoint' pen version...Let me tell you that DOES set off NERVES big time! If you mean the attach contacts and plug in kind, whole different kettle of fish.
I guess My concern would be regarding stimulation of one severely sensorily compromised and the ultimate safety of such contact instruments...IF one can feel NOTHING from a particular area [all nerve endings being compromised] any contacts could be doubly/triply-dangerous would they not?
IF it were my back, spine and related areas, it shouldn't be a problem, but with the peripheral areas...I have not found much to direct appropariate therapies other than the tens-accupoint...do you know of any particular research or feedback regarding this tool that might be beneficial?
For me it is the 'sensorily dead' peripherals...I found for a short term of PT that That Pen worked in waking up dead nerves...or dormant ones? It did wake them up BOLDLY! Justification for the appliance would be a whole other matter. According to one PTherapist, a script has to be written and 'instructions' given..I was the one who found the 'protocols' for the therapists in the 2 different handbooks..Duh. How hard can it be?
Issue for me is I do not have any 'breakthrough' pain...it is constant, unrelenting, unremitting, and unforgiving. Please articulate the differences...I believe some new folks here do not know of these differences.
I have done "Alexander, Feldenkrais, Rolfing, reflex, accupressure, T.E.A.M. techniques and a few others. Some experiences have been with national 'gurus' of these philosphies....and/or their acolytes... But I went in well versed and grounded as to what I viewed the pros and cons' of any approach to 'HEALING'. I still do. I will end here. - j
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Old 06-28-2007, 09:41 PM #24
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Dahlek,

I wonder if the level was just set way too high. Logically, if the level was set at 0, you wouldn't have had that extreme reaction. What about if were set at 0.1 on a 1.0 to 10.0 scale?

We do have to be gentle and kind with ourselves. You might have had a technician or practitioner who was not sensitive to your needs or skilled enough to be doing what they did.

From the American Chronic Pain Association web site:
Quote:
Breakthrough pain is an intense increase in pain that occurs suddenly even when pain control medication is being used. Breakthrough pain can happen spontaneously or in relation to a specific activity. BTP can start and become severe in as little as three to five minutes and last an average of 30 to 60 minutes. Most people with BTP report that it happens three to four times a day. Sixty four percent of people treated for chronic pain associated with cancer and seventy four percent of people treated for other chronic pain conditions will experience BTP.
I think it applies to most of us, myself included. I don't think I slept through one night for about 4 years. That did wonders for my career as a computer programmer as you can imagine.
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Old 06-28-2007, 10:00 PM #25
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Default I guess, communication is going to be....

difficult then...as my 'normal pain' is constantly at a 6.7 on the Richter scale? Ironic issue then would be, I fall asleep, meds or not, sleep for X # hours and then wake up..same as before. Maybe then, by your definition, I should simply switch to the 'chronic pain' aspects of this board?
As for variations of PAIN...remember The Lawrence Welk Show...and the guys would finger up and down those accordion keyboards like Silk?...well my own pain goes up and down just like those chords...IN the course of one static morning I can go UP and DOWN that scale of chords in minutes...at least five times...I do not think this is 'breakthrough' pain. I surely WISH it was. I guess I would appreciate some input as to a 'definition' of what a 'consistent, pulsating, progressive' pain is...
Please help me with such defining such a constant process. Many thanks in advance - j
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Old 06-28-2007, 10:10 PM #26
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I don't know about your situation, and would be guessing. With me, my breakthrough pains are either "electric" type shocks in the joints, a feeling like a carnivorous worm is eating the flesh way deep, or a sudden increase in throbbing pain. They made life very difficult indeed when they were common, and still stop me occasionally and take the breath away.

It's impossible to do almost any activity or even think when that happens. I don't react with any fear or anxiety because I know that it will pass, and what to do to make it happen less frequently.
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Old 06-28-2007, 10:53 PM #27
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Default I sure wish it were one....

'carnivorous worm'! My pain is more akin to one constant 'throb' as connected to a hi-tension line...you know, the HUMMM. they give off? Imagine being 'plugged into one'. You mite be CLOSE. in that aspect, but not nearly as articulate in terms of 'feeling it'.
What I have is no parasite...believe me. - j

The tens pens are totally lo key, and there was no mega vibe involved...it was just vibe waking up dormant or malfunctioning vibes...at levels that make my electronic DH positively YAWN as to the 'levels'.. DH is HOT on anything that involves CURRENTS. Ergo, this stuff is totally TAME,,, unless applied to key 'nerves'..
Any input? I'd appreciate sources/resources - thank you - j

Fear-Anxiety? Tell me how, one can safely MOVE with out fears of fractures [usually-multiple] and without fear of potential balance issues.. inspite of or as a result of extensive physical therapies...This Really is an Issue that MUST be discussed in depth other than in passing. As we tend to do...then gloss over?
'
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Old 06-29-2007, 01:09 AM #28
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Dahlek,

If you could define your need for understanding clearly and in detail, that would certainly be worth its own thread. My understanding is that you want to know how to deal powerfully and effectively with health issues that cause falling, fractures, and intractable pain. Is that right? Another way to put its, is what you're asking how to live a life worth living with PN, fibromyalgia, chronic fatigue syndrome, general autoimmune disorder, rheumatoid arthritis, and other debilitating, extremely painful chronic diseases with no cure and few effective treatments?

What you bring up is exactly the type of issue that caused an explosive increase in knowledge about PN and techniques to cope with PN in the previous Braintalk forum.

Physicians and neurologists lurked and were active in the old Braintalk forum and and are in this forum. For obvious legal and social reasons, they participate as peers rather than as physicians, but I'm sure that we've helped move the knowledge and practice of medicine forward in regard to PN and associated issues through our professional participants. .

This isn't a complete answer to what you're asking, but I found the book "Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness" to be full of helpful insights and advise. (http://www.amazon.com/Sick-Tired-Fee...3096763&sr=1-9 )
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Old 06-29-2007, 09:21 AM #29
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Default CHecking it Out

I just coughed up 97 cents to get the book! (new) but "used" on Amazon -cant beat that!
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Old 06-29-2007, 10:19 AM #30
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Talking

Quote:
Originally Posted by Wing42 View Post
Your kids can get it for you.
Buwahahaha!!! *gasp* I'm sorry. I had to laugh. Get your kids..... LMAO!! My kids would gladly do that for me. But I know many many people my age (in the 46 yr old range that is) who smoke pot. Getting it is not a problem. Getting it to work that way for pain is for me.

Thanks for the laugh! That helps too by releasing endorphins.
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