Tried TENS for the first time today

[ICLori]

Well, I got to try a TENS unit today for the first time. The physical therapist was such a sweetheart, she was as nice to me as any person could be, listened to me very patiently, answered all my questions, and really I could tell she wanted to help me and cared that I was hurting. So I really got lucky that I had such a wonderful experience and got a wonderful, caring healer today!

There was some good news and bad news with the TENS though. The good news is, I didn't get relief while the machine was switched on (for ten minutes this session) but about half an hour later, I started feeling numb "down there" and all over and my bladder pain/frequency/urgency went away. It was nice! I went two whole hours before I had to urinate!

The bad news, though, was that when the numbness wore off after a couple of hours, I then had much worse pain for a couple of hours and even a little more pain now. I had to pee every ten minutes, the frequency/urgency was way up, and even a hot, hot water bottle didn't take the pain away when normally it does.

So it's almost like, it helped and then the pain came back twice as bad. I wonder if anyone has had that experience? I wonder if that means I wouldn't be a good interstim candidate?

Oh, and I was glad that I don't seem to have any PFD or muscle problems down there. At least that part of me is working okay, LOL!

Blessings, Lori
P.S. I'm still going to go to the other appointments and try again, you know, just to confirm what I experienced today, and see if it was a fluke or if this happens all the time to me. I'm thinking though if this is what happens to me - pain relief followed by twice as much pain - maybe the TENS isn't the way to go for me.

[Katrina]

Oh sorry Lori! Wish it had been a perfect experience. I don't know what that all means but I hope that it does turn out to be an over all good thing for you. Definatly helps when you have a good healer helping you!!!!!

Good luck on your next visits!!!

[ErinBear]

Hi Lori,

I hope you'll go back and try again. It may be possible that they can readjust the TENS unit to a different frequency or modulation, one that will work better for you and not cause the same problems. If it gave you some relief, I would say that's a hopeful sign. It may have been...well...cranked up too high <s> for your particular situation and it may need to be readjusted. So I hope you'll talk with the physical therapist about it and let her know what happened later in the day. My guess is that you got a lot of muscle stimulation by accident. (I used to use TENS for a different pain problem in the past - I am looking into using it again for IC now)

Take care,
ErinBear

[jen_dahling]

Lori, my mom used to sell the TENS unit about 15 years ago when it first came on the market. I think it is a wonderful invention and helped me so much with my awful period cramps before I went on BC. I think that it is important for ICers to remembre that while you are feeling good, like for your two hours of no pain, you STILL HAVE TO TAKE IT EASY. The TENS is only a nerve blocker and once you take it off or the nerves catch up to the TENS not being there, all the moving around and stuff may aggrivate your bladder very badly. Everything that you do to be careful about flaring when not using it still applies while using it. So my advice is to take it easy and try not to over-extend yourself. Take care!

[ICLori]

Hi, Erin and Jen, thanks! I think I may have had it on too high too - I wanted it to be on nice and high so that it would really work, but I noticed it was giving me some muscle twitching so maybe it was too high.

I was very inactive that day with the TENS - really just drove home and laid around on the couch, my usual daily stuff, LOL. Didn't eat or drink anything no-no either really...can't think of anything I did that would have set my bladder off at all.

What scared me that night is, I've always been able to make the pain go away with a hot water bottle, but after the TENS unit that didn't work that night...still had pain...

Blessings, Lori
P.S. I will try again this week (Thursday) and maybe try a lower frequency...

[ErinBear]

Hi Lori,

I'm not sure how you're using the TENS at the present. Are you just using it at the physical therapist's office? If you end up getting your own unit and it helps you, another good thing is that you can use it more frequently. So, you might be able to use it....I don't know...2-3 times a day? You'll have to ask for recommendations. But that would give you another option for pain management at home.

Usually muscle twitching is not advisable, so yes, probably it was cranked up a bit high. :-) Depending on what people can tolerate, usually a bit of a buzzing or tingling sensation is all that is needed to get an effect. As you get used to it, you may get an idea of what works for you and what doesn't and be better able to adjust it yourself also (if you stick with it). It doesn't have to hurt or have a strong sensation to work. But you can talk with the physical therapist to get better advice.

Hope this helps.

Take care,
ErinBear

[ICLori]

Hi, Erin, I was using one at the office, and she said it wasn't a TENS but some in-office machine like a TENS. She is setting up a once-a-week treatment schedule for me. I guess if she decides that I am doing well with it, I might get a prescription for one at-home? I hope so anyway. Haven't really gotten that far yet.

Boy I know this isn't related to TENS but I am getting kind of bummed out about what options are open to me if TENS doesn't work - Interstim and bladder removal. To be honest I think Interstim is probably (even if it works and doesn't make me worse) only a stepping stone to bladder removal - not a permanent cure.

Well, maybe I am not being optimistic enough, I have to give TENS more chances, maybe it was on too high, I will talk to the physical therapist and we will adjust things. Maybe what I will have to end up doing, if I have a device at home is keep it on very low for many many hours, like all the time. It's so weird that I didn't have any pain relief DURING the ten minutes - not until about half an hour afterwards...is that normal I wonder?

Blessings, Lori

[jen_dahling]

It sounds like it was too high. I remember having muscle twitches like that and it could also be the source setting off pain later on. The muscles could get too much stimulation and cause achiness and pain. I used to leave my unit on at low or medium frequencies, depending on what you can handle, for hours on end. I would take naps with it on and could rest without any cramping or pain. I would prefer to have a unit at home under my own control. That way you could put it on to help control break through pain any time you needed. Good luck, Lori!

[ErinBear]

Hi Lori,

I don't know what kind of unit that you were using in the physical therapist's office, although I know there are some different kinds of gizmos that are sort of similar to TENS but different in one way or another. Maybe you can ask the physical therapist to explain it more so you'll know! :-)

I used TENS in the past for a totally different problem, and I haven't tried it for IC problems yet. But when I used it, I did get pain relief for a good bit of time with each treatment, if I remember right. It seems like it helped when I was using it, and at least for a few hours afterwards, if not longer. I think I used it twice a day. I was using it for severe pain related to my jaw joints and it was very helpful.

I also think that Interstim isn't necessarily a stepping stone to bladder removal...it sounds like there are some people who have written here who have had very good experiences with their Interstims, and that Interstims can be very helpful in the right instance. From the things I've read here from people who've had good experiences with their Interstims, it doesn't sound like they have any plans to have their bladders removed. Now, granted, Interstim surgery doesn't always go perfectly for everyone, but I think positive thinking is an asset if you plan to do a surgical procedure, even when you know there are risks. Although hopefully the TENS will help you (and me) and maybe we can find a treatment that will help us without resorting to surgery. Or at least I am hoping that for myself anyway.

Anyway, good luck with the TENS treatment, and I hope the physical therapist can come up with a better setting for you!

Take care,
ErinBear

[ICLori]

Hi, Jen and ErinBear, thank you both! Jen, I think you are right! I had this mistaken idea that if I turned it up as high as I could stand it, it would make the pain go away better or longer! I guess that isn't true, LOL! So thank you so much because I'm pretty sure that's the reason I did have the pain when the numbness went away, just like you said! So perhaps at a lower setting it will work much better and I won't get the increased pain after the numbness wears off. I do hope that if this treatment seems promising, I might be given a prescription for an at-home unit.

I just don't know what machine was used on me..I will try to remember to ask.

I know I should try to be more optimistic about what can happen in the future, with Interstim. I'm having a devil of a time trying to figure out if I want to try it or not.

When I read the success stories here on the board, for Interstim, I think - oh yes, I should try it, it could give me my normal life back. When I read the failures and horror stories, I think, oh, no, I could be letting myself in for something way worse than what I am suffering now.

I don't have any scientific studies. The site at Medtronics makes it look good, but, hey, they are the manufacturers of the thing, of course they will make it look good. (I'm skeptical of businesses, I admit.)

So the only thing I have to rely on, to make my decision, is what I read on this board and also my doctor who seems to think it's the best thing since sliced bread. Even though it's a totally new thing and they have no idea what happens in the long run. And even though apparently the surgery is really horrific for it.

It's really scary, I'm really scared. I'm hoping so much the tens will work well enough so I won't have to decide right now, maybe I can just live with a tens unit...keeping my fingers crossed.

Thanks so much you guys for everything, I feel much better now that the mystery was solved! I didn't know that if it was on too high I could get the increased pain after the numbness wore off. I thought maybe I was just crazy, imagining things...I was thinking..do I dare report this to my PT or will she think I am nuts? Now I know that it is a possible side effect so I feel more confident about reporting it.

Blessings, Lori

[ErinBear]

Hi Lori,

Oh yes, I hope you'll tell your PT about what happened. I feel quite certain that the machine just wasn't adjusted right for you this past time. Sometimes it takes a process of trial and error to find the best setting for each person, I think. When I first started using my TENS unit, it took me a few visits to find the right setting for me. I think the first visit didn't have much effect, and then the next visit....we set it too high, and I had worse pain, I think. So we took a few tries to find a good settting.

There are also machines that are similar to TENS but are not, and are used for muscle stimulation instead. If that's what she was using, that's a different ballgame. It is probably not appropriate in this situation. So ask about using TENS specifically, because I have heard of using it to treat IC pain.

In terms of Interstim or other surgery, my doctor has sure mentioned those options too. Repeatedly. I think, for myself, I want to know that I have tried every other option first, and completely/exhaustively, before I even begin to seriously consider surgery. I have had a lot of surgeries for other things. I think it is wise to try every conservative, non-surgical treatment that I can. And then I would evaluate how bad the situation is, and what I can do about it. In my case, I think I would even evaluate whether I could go on long-term opioids (pain medication) and whether that might be a possibility. That would not address the frequency problems I have, but it could address the pain, which is what troubles me the most. And with Interstim, theoretically, it doesn't help with pain in all patients, just some. I think each person needs to make their own decision and speak with their physician. I just know when one has surgery, it's hard, because even when things go well, it makes irreversible changes - like scar tissue. And when it doesn't go well, there are also irreversible changes a lot of the time that can be more significant, like nerve damage, for instance. So I definitely would only choose that as a very, very last resort, at least for me.....but that is just me. <s>

And I think I would have to be even more exhausted with my IC and having even worse symptoms than I am now.

I don't know - it's pretty complicated!

So I am wishing the TENS would work for me again - that sounds much better :-) and I am hoping TENS will help you too

Sorry this is long. Good luck with your next PT visit

Take care,
ErinBear