Desi,
I'm sorry that it is causing more pain. Stop using it, and let your doc know what is going on. If it is hurting like it is, he should know about it. My pt gal would only do what doc told her to do. One Sat. she call my doc at home as he found a very small soft spot. I told her not to call him at home, and she said she was required to notify the docs of anything she found. She said that they are not able to treat anything other than what doc ordered. She would have to get permission for any type of therapy such as whirlpool, etc. You don't deserve anymore pain. maybe a good day to do nothing and watch tv, read, etc..
your friend.
Mary

Hugs.

Stop the tens unit. Then before your next therapy appt, sit down with the therapist and say "I have some concerns." 1. the tens unit is extremely painful and not helping at all. I will not use it again until I have a chance to speak to my dr. 2. I do not focus on my rsd spreading. It just so happens that everyone is different and some people go forever and not have it spread, others it spreads immediately. 3. Please do not compare me with other people. I realize PT is a good thing to have, however, everyone is different and everyone responds differently to PT, please don't compare me.

Now if she cannot accept any of the above. Make an appt with your doctor and let him know all of the things you have talked to her about and are not happy because she will not accept one or all of them and you need a new person.

PT offices usually operate under the direction of the hospital or Dr. office. Where I live I have been to both types. Tens units are routinely used by most PT offices without the need of a DR. giving permission. I used one, at first I thought it helped, but decided it really caused me to be more on edge with more pain. I was renting it for the month to see if it helped. I gave it back and told them how it made me feel. The PT told me I could buy a low voltage one that wouldn't make me want to scream-as loud LOL So I did, it did not help either. So stop using it and tell your Dr. why you stopped. He may have other methods that can help quite nerves. I think the method that worked best for me was the passing of time. I just got up and went to bed and got up and went to bed, and one day I thought maybe I can do this after all, thanks to my wonderful dr.and all the help I got from him. I still have days I could shot myself and days I can almost convince myself I don't have RSD as I feel so good. Here's to more feel good days and less pain!!! Carose

Heya Desi,

That sucks my dear!! However... PTs can try you on things if they think that it might help you and as the others have said, some people are helped by it, some aren't. However. I have had a ligament disease (HMS) since I was young and though it didn't cause too much discomfort I did get alot of stabbing pain going through my neck from HMS, too much hockey, netball, climbing, rugby, sailing and too much music (double bass, accordian, piano to name but a few) and it did help then - but that might be because it was more muscley pain that say neuropathic pain.

However, after getting RSD I started using it on my neck and upper spine again to try and get some relief in my arms - as there was no way that ANYTHING was touching my arms... I found it did help if it was set on the weird buzzy frequency. Instead of it sending little shots out it would instead just start buzzing. I would then turn the voltage up until it numbed parts of my neck and spine and I think it helped.

Gel - if you don't use it then the electricity doesn't conduct as well. Also if you damp the pads before putting them on your skin they conduct better (well, mine used to!).

I used to use a different one which worked in a similar way to an SCS but it didn't make that much difference to me unfortunatly, but some people recommended it as the non surgical version of SCS..

erm... that's it for now!!! LOL

sending you tons of love!!!

Frogga xxxxxxxxxx

PS Shoulder is back in..!!!!! since Saturday!!

I just got a tens for the first time and am having some success with it. It stops low level pain which is important for me since I get so much of it. Unfortunately it just makes the higher level pain mad. It turns it in to a sort of persistent ache that feels like the regular RSD pain.

I also have to be careful with it because it seems to cause tremors sometimes. I'll report back when I know more but so far this thing is great.

My worst trigger for pain is usage of the affected hand. It doesn't hurt when I use it but 12 to 72 hours later. I've had to learn what I can do and what I can't and it's a continuing education. Using it as much as possible is important but it gets veto power.

Desi,
I got kinda worried when I read your post here. I will try to keep my response as short as possible...but I apologize in advance if it winds up being long.

I have only used a TENS unit once....and I won’t again. However, I HAVE and DO use an Interferential Unit. I have two different kinds of these....but I will only talk about the one that is most comparable to the TENS unit. Not all electrical stimulation devices are created equal. While both of these kind have settings, where you can change the intensity and frequency of the stimulation....there is a difference in the TYPE of stim that each gives. If this makes sense? Right now, I am having a brain fart about the whole thing (I will post more about it later, after my brain loses all of the gas build up and doesn’t have so many brain farting problems! LOL)...but I believe that it has to do somewhat with the level of the penetration of the waves, and the type of waves that each device puts out. The TENS unit drives me crazy and hurts like hell. The IFU feels wonderful, and helps to relive some of the pain. It can be set so that if feels like gentle finger giving a massage....which feels very nice, since I can’t tolerate regular massages!

About the PT lady.....her ability to “treat” you all depends on what the doc wrote on the script for PT. If he put “Evaluate and Treat” (or some other such type wording) then she can treat you....to a point. She also has to report back to him how you respond to the treatments, and any progress (or not) that you have during PT. I don’t know if this is done weekly or what. I DO Know that she should have a file on you, and make notes in it each and every time that you come to PT.

There is a couple of things that you said about the PT lady that have me kinda.....concerned. First...the comment about not thinking about the TENS unit causing spread, because if you do think about it, you will have spread. Or whatever the cockamamie hell she said. My response to that when I read it was “WHAT???!! WTF??? Does she even have a CLUE about RSD?” I agree with you; that boarders MUCH too closely on the “It’s all in your head” thing. I guess that if you concentrate on the TENS Unit HELPING you, then that will work too? The whole time that you are in pain...as long as you concentrate on it helping, you are good? Whatever.

Also, she actually told you that using the TENS (and, I asume, doing other types of PT) will make your RSD..”go away”? That set off all kinds of alarm bells for me too when I read that. She CAN NOT make such claims. She can say things about how she is helping/wanting/hoping that you get better, and that your condition improves because of PT and other treatments...but to make the claim that something that she does there in PT will make it “go away” is absurd, unethical, and unprofessional. LOL, at least in my opinion.

Another thing that is glaring at me here.....she asked you to bring in your HUSBAND’S TENS Unit? And, she told you to hook it up and have it on and going all day long? Ok....what is your husband supposed to do? Does your Husband have RSD also? Or, is his pain of a different type totally? One type of pain treatment can not be assumed to work for ALL Chronic Pain patients. Or, even all patients with the same dx. Another thing that I have a problem with here, is that she told you to hook it up and use it ALL day?? WTF?? Even with my IFU, I was told to use it for only 20 minutes or so at a time, at least at first. Then, I could use it for a bit longer (it has a setting on it, so that you can set it to go for 15-20 minutes, cut off for 40, then cycle back on without you doing anything but making sure the batteries are good), but not for HOURS at a time. Not even on that setting that I just talked about. In my case the stim that I get from the IFU is helpful to me...but I was told that there is such a thing as “too much of a good thing being bad” for me. In your case, it sounds like this is just a case of too much of a BAD thing being bad for you!

A good rule of thumb; if something HURTS and causes you more pain than you would be without doing it...DON’T DO IT! Now, I understand that there are some types of PT that cause some pain while they are going on (desensitation [sp] comes to mind right off hand), but they are actually things that will help you in the long run, and don’t leave you squirming in pain for hours afterwards. AND they aren’t things that you, or any of us, are told to do CONTINUALLY, non stop throughout the day.

I am curious; what does this woman say when you tell her that the TENS unit is CAUSING pain, instead of relieving it? I understand that she has trotted out some story about some guy that had sprung his ankle and used the TENS, and got “all better”....and I am assuming that she says that this guy had developed RSD from that sprung ankle. But....SHE should know that not all people are the same, and not all people respond the same way to treatments. So, besides trotting out that tired story (I think that we all have heard a verison of that story at some point in our lives with RSD...I know I have! LOL), what does she say about YOUR case? YOUR Response to the TENS? The pain that is it causing YOU?

I agree with all of the people that have posted before me and said to stop using the stupid TENS unit. I most certainly would. If she says something about you being “non compliant”...just tell her that you will talk this all over with your doc. That you are willing to try treatments to see if they will help you, and that you understand that some of the treatments might be uncomfortable at first....but that you REFUSE to subject yourself to some kind of treatment that causes you continual pain each and every time that it is on. And..I WOULD talk to the doc about this whole situation. The PT lady has to do what HE says....no matter if she likes it or not. If she passes out flyers on RSD< then she should know that everyone responds differently to different types of treatment, and that PT should NOT consist of things that increase pain. I also agree with the person that said to sit down and talk to her about all of this. I think that is a good idea, too. Just, remain calm and cool through out the talk. But, I would also keep in mind that if she is going to be set in her ways of treatment, that you probably will need to try to find a different PT person or place. Also, when you talk to your doc, ASK him how he wrote the PT script. If he has on it the “Treat” part...ask him to either take it off, or revise it, or to make it more clear...or SOMETHING to help you with PT and not have you having to do things that cause you more pain.

In the meantime, just stop using the TENS unit. There is no reason that you should do something that is causing you this much pain.

I hope that I helped a little, and didn’t confuse things more. I just got really concerned when I read your post. Sorry that this wound up being so long...I DID try.....I just talk too much, I guess.


Jose

Thanks Friends! I am going tomorrow afternoon again for PT I will write you all a reply on your posts when I get back tomorrow. I love ya all and I want to thank each and everyone of you again when I get back from PT boot camp.. LOL

Hi Desi,

My experience has been that if it causes more pain, it's ultimately not going to help me and might even make me worse. It was a physical therapist that aggressively treated my knees & caused the RSD spread there. I'm not saying that all PTs are bad, but I had a bad one. Prior to her, I had a good OT that treated the RSD in my hand. She did have me use a TENS at a very low level and constant modulation on my arm. She said the intent was to disrupt the pain gate. The TENS was not put on the RSD hand. I can't say that it really helped but sometimes I use it now on tense shoulder muscles. I've tried it on my sacro area but it makes the pain worse there.
I wish PTs knew more about RSD. I just don't trust them anymore. I hope yours can help you.
Linmarie

I definately agree with the others- Stop the tens unit- I would never do anything that makes my RSD feel worse. Unfortunatley a lot of professionals including PTs do not really understand RSD- They cant get thru the "work thru the pain" concept. I have had it with them and many docs who just don't get what we are going thru and what makes us worse....

Deb