Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 02-09-2009, 07:32 AM #1
llrn7470's Avatar
llrn7470 llrn7470 is offline
Member
 
Join Date: Nov 2008
Location: southwestern PA
Posts: 101
15 yr Member
llrn7470 llrn7470 is offline
Member
llrn7470's Avatar
 
Join Date: Nov 2008
Location: southwestern PA
Posts: 101
15 yr Member
Default Update and TENS question

I have actually been having a run of good luck with my RSD. There is a big improvement in the sensitivity and my mobility is very good. I am still off work trying to get some strength back. Still have discoloration at times and still have areas of patchy numbness and burning. I took myself off of MSContin (WOW did that suck) and am decreasing my Lyrica and so far so good.
Now my concern is pain control for my eventual return to work. I know that once I get back into the ICU my sympathetic will be firing like crazy, but I don't want to do a SCS since I am improving and it's too soon. My pain doc thinks that a TENS unit might be helpful. Anyone have any experience with TENS units and RSD pain?
Lori Lee
llrn7470 is offline   Reply With QuoteReply With Quote
Old 02-09-2009, 11:58 AM #2
Mslday's Avatar
Mslday Mslday is offline
Member
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Mslday Mslday is offline
Member
Mslday's Avatar
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Default

Hi Lori,

I'm thrilled to hear you are doing so well right now. I know it's hard not getting back to work just yet but you know your job right now is to take care of YOU first and foremost and it sounds like your doing well at that. We all know it takes work to manage RSD daily. Keep up the good work!

I have a TENS machine that I have used over the years off and on with a fair degree of success. I typically have used it when I knew I would be on my feet for a while, like cooking dinner or doing my housework. It has helped me get a bit more done with out increasing my pain. I have even used it when doing some exercises. I will pull it out and use it as a treatment option before taking medication and that is helpful. Just one of the many tools in my pain management tool kit.

In my opinion an SCS should be a last line of defense. I was offered one too in the beginning and I''m glad I rejected it. I know it has been very helpful for some people here but for me the potential complications and risks are quite high. I've seen other patients go through hell with problems with the units, the batteries and further invasive surgeries and that put me off it as a treatment option.

I think you know know I'm a big fan of Lidocaine infusions. I started having them done with a subcutaneously pump after Christmas and it is working just as well as the IV infusion. Below is a picture of the pump. I have only needed to take 1 Tylenol 3 in the past month for pain. Lidocaine allows me to function at a much higher level with much less pain medication. I am able to drive, well not on my lidocaine days, but that is really important for me, to maintain my independence. There are many patients here doing very well with Lidocaine also. I can send you the patient info sheet on it if you would like.

I'm hoping to go back to work in the near future, find a new job of some sort. I still have to manage my daily stress and pain levels but I think it would be better for my self worth to get back into the game even if it isn't in the same capacity as it was before I got my RSD.

When you are ready to go back to work will they allow you to do a modified return to work program of some sort? I did that for two years after I got RSD and I was able to work part time, unfortunately my company would not allow me continue on that program, insisted that I return to work full time at full capacity. My body could not handle that at that time, I was still having constant flares from the metal screws left in my foot. I think it will be very important for you to take it slow returning to such a high stress job.

MsL
Mslday is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
kelly6449ed (02-13-2009), llrn7470 (02-13-2009), loretta (07-27-2009)
Old 02-09-2009, 12:01 PM #3
Mslday's Avatar
Mslday Mslday is offline
Member
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Mslday Mslday is offline
Member
Mslday's Avatar
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Default

Opps...forgot the photo of the pump, here it is.
Attached Images
File Type: jpg P1240137.jpg (213.1 KB, 125 views)
Mslday is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
llrn7470 (02-09-2009)
Old 02-09-2009, 12:55 PM #4
llrn7470's Avatar
llrn7470 llrn7470 is offline
Member
 
Join Date: Nov 2008
Location: southwestern PA
Posts: 101
15 yr Member
llrn7470 llrn7470 is offline
Member
llrn7470's Avatar
 
Join Date: Nov 2008
Location: southwestern PA
Posts: 101
15 yr Member
Default

Quote:
Originally Posted by Mslday View Post
Opps...forgot the photo of the pump, here it is.
I talked to the pain doctor that I am seeing now (not the psycho that I fired) who I love and she was open to my talking about options. She thought that trying this would be the least invasive way to try and get back. I'm not sure how long I am allowed on modified duty, but they do have it for my for some period. Until then, I have bee just trying to stay moving to some extent to the best of my ability around the house to try and regain my strength. She would consider other treatment options in light of this failing. It's good to hear that you are having such success with the Lidocaine pump.
Do you (or anyone) know of a place in the resources which list a) precautions that I need to take should I ever need surgery again and b) information that I can give my dentist about how my RSD impacts my dental care. She thought I had an abcess (I told her I didn't-no fever, no yucky taste, no drainage, no certain tooth that was sore and they are all three crowns), but put me on antibiotics anyway. I developed an intestinal disturbance called CDiff and now need two weeks of treatment for that. Not fun!
I really am betting on the TENS unit being enough to help me through working pain wise. I could of course take anything OTC in addition, but I just have to get back.
Thanks! You're such a support.
Lori Lee
llrn7470 is offline   Reply With QuoteReply With Quote
Old 02-09-2009, 02:17 PM #5
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Hi Lori Lee,

This is wonderful news. I am so very happy for you. Much Love, Roz

I am starting to use the Jai Energy Enhancer.
  Reply With QuoteReply With Quote
"Thanks for this!" says:
llrn7470 (02-09-2009)
Old 02-09-2009, 02:21 PM #6
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Here is a link about it.

http://www.americanwellnessnetwork.c...n-Therapy.html
  Reply With QuoteReply With Quote
"Thanks for this!" says:
llrn7470 (02-09-2009)
Old 07-27-2009, 10:01 AM #7
Bean Bean is offline
New Member
 
Join Date: Jul 2009
Posts: 1
10 yr Member
Bean Bean is offline
New Member
 
Join Date: Jul 2009
Posts: 1
10 yr Member
Smile

Quote:
Originally Posted by buckwheat View Post
Hi Lori Lee,

This is wonderful news. I am so very happy for you. Much Love, Roz

I am starting to use the Jai Energy Enhancer.


I have also been using the Jai, for about 7 years. It's a spectacular technology that helps with pain, fatigue, depression, stress and sleep. It's worth renting one to try it out.
Bean is offline   Reply With QuoteReply With Quote
Old 02-09-2009, 03:51 PM #8
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Heart

Hi Lorie,

I can't tell you how happy I am to hear that you are finally getting some much-needed pain relief and seeing some improvements - that is GREAT and you SO deserve it after everything you have been through!! I really hope that the improvements continue and that you are in remission very soon!!

I tried a TENS Machine before I was diagnosed with RSD and it didn't work at all for me. If anything, I think it probably made the spasms worse as my muscles just couldn't cope with the stimulation from the electrodes. I also noticed that I was having quite a bit more cramp after the treatment. The TENS didn't work at all for ME although everyone is different and it really is a matter of trial and error - as I am sure you know already, no two people are the same when dealing with this illness!!

Here is an article that my Physical Therapist gave me when I first tried the TENS machine that you might find useful - it tells you what to expect, how the TENS works etc:

Facts about TENS
Technically, it is low voltage and hence safe. It uses a biphasic alternating current so as to avoid tetany and to prevent the increase of ionic concentrations under the electrode surfaces). It can be used as “high” frequency (greater than 50 HZ) or “low” frequency (less than 10 Hz). It is typically battery operated for portability, compact and discreet for the user.

The author’s prescription for TENS:
CRPS pain and changes to that area of your body are like scrambled signals going to your brain. This has resulted in the brain putting that area on the highest alarm status. All signals coming from your area of pain are amplified as a result. Even normal signals are translated by the brain as painful. This has become a vicious cycle. The treatment is aimed at reversing this cycle.

5 Application of TENS to CRPS

Settings
High frequencies (200 Hz) and low intensity (50 to 100 us) have been shown to be the most beneficial for persistent pain conditions [16]. A low pulse width is used usually 75 us. A constant or modulation mode is better tolerated. Few enjoy the “burst” mode. In clinical practice, the constant mode is always used.

Duration
Research into duration of use is scanty. Our current thinking of 20 minutes once during therapy day may not be effective simply because it is not long enough. The longer duration of use is useful. This means using it for up to 8 hours a day.

When can’t TENS be used?
There are several situations where TENS cannot be used:
• TENS cannot be used on the site when the skin sensation is decreased due to sensory nerve damage, or when there is hyperalgesia or allodynia. However it can be used further up from that site to access the nerve or dorsal column.
• Patients who have a high tolerance for opioids and are taking large opioid doses for their pain cannot use TENS, as the opioid receptors in the brain may appear to be the same as the TENS sites.
• If the patient has a pace maker-check safety with the Cardiologist first.
• If someone has severely sensitive thin skin, prone to rashes it cannot be used.


What should the patient feel?
No muscle contraction should be felt. it is not the strength of the sensation that is important. It is simply that there is a pleasant sensation all the time. Remember, we are distracting the brain’s radar from the pain and closing the gate to the nociception. As the skin accommodates the current, the intensity can slowly be increased over the day. What is “started” with is not what will be “finished” with. The first sensation is typically felt around 11 ma and then still comfortable around 30 ma after eight hours.

I'm thinking about you and please keep us updated when you can!
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
kelly6449ed (02-13-2009), llrn7470 (02-09-2009), MominPainRSD (02-10-2009)
Old 02-11-2009, 10:44 PM #9
Imahotep Imahotep is offline
Member
 
Join Date: Feb 2007
Posts: 606
15 yr Member
Imahotep Imahotep is offline
Member
 
Join Date: Feb 2007
Posts: 606
15 yr Member
Default

The tens helps me to get distracted from the pain but it's a little like sending a bee to kill an elephant. I have been using it a little more recently though.

The biggest problem is that it worsens my tremor that keeps me awake. I can't use it more than about twenty minutes a day because of this.
Imahotep is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
llrn7470 (02-13-2009)
Old 02-12-2009, 11:16 AM #10
Mslday's Avatar
Mslday Mslday is offline
Member
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Mslday Mslday is offline
Member
Mslday's Avatar
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Default

Quote:
Originally Posted by Imahotep View Post
The tens helps me to get distracted from the pain but it's a little like sending a bee to kill an elephant. I have been using it a little more recently though.

The biggest problem is that it worsens my tremor that keeps me awake. I can't use it more than about twenty minutes a day because of this.
Can you adjust the modulation on your unit? The TENS that I bought on my physiotherapists recommendation has different programs that I can change it to. On days when I'm really sensitive I switch it to a different program and turn it down.

MsL
Mslday is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
llrn7470 (02-13-2009)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Tens unit razzle51 Classifieds 7 11-23-2012 04:32 PM
SFN Progression Update and Question jsrail Peripheral Neuropathy 8 11-13-2008 04:17 PM
Scott update, and a question about botox FeelinGoofy Tourette Syndrome 2 03-30-2008 08:29 AM
TENS Unit theoneRogue420 Classifieds 5 05-30-2007 07:30 PM
update...question... sallyb Chronic Pain 4 11-07-2006 08:09 AM


All times are GMT -5. The time now is 12:00 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.