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

Desi? what happened?? we are all curious???

Hi there!! Thank you all so very much! thanks Jacquelina, Tayla, Sue K., Mary, Christine, Carose, Frogga, Imahotep, Jose and Linmarie!! Your all the "BEST" sorry it took this long to get back to you, I went school shopping with my hubby and daughter for her school clothes. LOL
Ok.. I went to PT at 4:00 and as soon as I got there, I went to the desk(where you sign in) The girl there said ;"Yes, can I help you?? I said;"yes, you can, I need to talk to the Dr." so, the girl says, he's with patients.She said I will tell him that you need to see him, I will make a note of it. I said, ok.. I have a PT appointment at 4:00 (His office and the PT place is in the same building, right across from my Dr.'s office).. he can see me in PT Ok, I go into PT and Sue (My PT therapist) She starts to get the heating pad all ready to put on me and as she's doing this, in walks my doctor! He smiles, comes right over and said;"Yes, you wanted to see me??" I'm like...yes, Dr. I do NOT want to use my Tens unit anymore, as this hurts me. he's like what do you mean a tens unit.. and Sue's face got all red.. and I mean RED!! So, I say; well.. and before I can finish, Sue said to Dr. Engle.. oh.. ummmm.. I thought I would try this on her to see how she would feel on this. Here, he said .. Sue I did not give the ok for her to use this, may I see you please?? So he's talking to her. Darn, wish I could have heard their conversation!!! So, he comes back and asks me how I am doing. I told him everything about how I hurt more with the pain from the tens, how doped up I am from taking 600 mg. of the Neurontin 3x a day. He was so nice, changed my dose, left it to more of a dose in the evening before bed. He said how sorry he was that nothing was called to his attention about using a tens on me. ok.. So, I go to PT and let me tell you, she was the nicest PT for the rest of my session! I feel I learned a lot by this, was to speak up!! I want to thank you for telling me to speak up (I'm sorry I forgot who told me this, you know who you are, so a HUGE THANK YOU!!!) Sue will be on vacation.. AGAIN! next week, so I will have a guy named deven doing my PT this coming wednesday. Hope he's cute! HA! HA! HA! had to say that!! I bad! LOL
Anyway, that was what happened. Now, as far as PT went she said it again, I shouldn't dwell in my mind about it spreading! I then said"You make it sound like it's all in my head"! She just shook her head no, then said oh, no that's not what I meant! I then said what, then?? She dropped the subject like a hot potato Hmmmmmmmmm..... wonder why!! I said, also you mentioned about that guy getting better with PT??(remember, I mentioned in my post about the guy who sprained his ankle? had several PT sessions?) She said that's right, he's all better and doesn't need to come here no more!! I said;"ohhhhhhhh.. I see, he's all better?? She said yes. I said you mean he's in remission?? she said;"No all better"! I then said;"Ya know, RSD effects everyone different, and no two people are the same. He may be in remission, may come back?? She said no, he's done with PT, he is now working! I said;" "he's done with the Dr. here"? she said I don't know he didn't see our Dr.'s here. she then went on to say, well he may still need his medication. I said, then he still has it?? she said Oh, that I don't know?? So, I am hearing two stories to this one. Well, again, thanks friends.. you truly helped me by having me speak up, and I feel mighty good about this. When she starts getting too rough with PT on me I will say STOP IT... YOUR HURTING me! Thanks again all who replied... your "AWESOME" I FEEL MIGHTY GREATFUL" FOR Having the guts to stand up to this PT lady because of all your help!! Love and to ya all!! Love, Desi

You go Captain Desi
I am so very proud of you

You are on the way to the best medical care for you !!!!!

much love

GnP

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

Desi,

Way to go!

Linmarie