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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 02-17-2006, 11:02 AM   #1
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TENS treatments

I have read about TENS units and their "effectiveness" and want to hear any personal experiences with this kind of treatment.
I started therapy with a new pt, he calls it Sympathetic Transcutaneous Stimulation. Basically, it is a big TENS unit, but the electrodes go on acupucture points. the pt says that he has had two patients with RSD go into remission with this treatment.
But it is very painful for me, giving headaches and increaseing the RSD pain in my bad leg. I even get very nauseous, and have vomited once.
So I gave it another try, and the pain just climbed again, the frequency was turned down three times until the session was over. Now I have a headache again, and my leg is so bad, and the breakthru meds are not helping.
i just need to know that I am not the only one who has not done well with TENS therapy. All I have read makes it sound like it is this great treatment for everyone. That very few have adverse effects.
Am I the strange one that it doesn't work for? Or should I try to stick it out?
Not sure what to do.
Please, if you have a TENS, know someone who does, or had a bad time with a trial or TENS treatment, please let me know. any information from those who have RSD too is better than anything I could read about it from doctors. thank you. I hope everyone is doing well, and that your pain is low. sorry it has been a while, but I am trying to deal with IME's and family, and all these appointments and pain.
hugs to all!
michelle

 
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Old 02-18-2006, 02:56 AM   #2
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Re: TENS treatments

Hi Michelle. I too tried the tens treatment and it did nothing for me. Although it didnt make the pain any worse, it certainly didnt make it any better. I think everyone is different. Anything is worth a try but if it is making you worse Im not sure I would continue. Claire

 
Old 02-18-2006, 09:09 AM   #3
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Re: TENS treatments

I think Skooze uses this machine and likes it. Hopefully she will see this thread. I read about it on the internet, but my husband has only tried the regular TENS unit, not this kind.
Sunny

 
Old 02-20-2006, 07:22 AM   #4
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Re: TENS treatments

Getting mine was really a godsend actually.I was really quite suprised on how well this worked on my deep bone ache pain but unfortunetly it does not seem to actually work really well on the deep burning pain.I am wondering how having the TENS on your leg actually could cause headaches,but then again when dealing with all of the strange and bizarre crap that causes the RSD,notbhing should really suprise me anymore.but the knee I used it on not only has RSD but also a chacots joiunt a meniscus tear,a bakers cyst and alot of fluid.but the TENS really does help with the bone ache pain really weel .when it wants to I can even sometimes relive at least a bit of the burning but not often .the thing is the electrode placement is actually the most important part of whether or not it will even work.my therepist told me to always set the electrodes,no matter where I am using it,so they actually will run in a cross thru and not parallel to each other,do you know what I mean?you criss cross over the (in my case)knee with connecting one electrode to the other that is crossed over to the opposite side so the current actually has to go "thru' the affected area.depending on just where the worst pain in the knee happens to be on that particular day I usually have to just shift exactly where the placement goes so it will run thru the worst pain area on that particular flare.but it is always pretty much just a tiny shift different then where the worst pain will be on the opposite side of my knee that day.I also almost always leave the setting on number twelve which is that pulsating one?i have tried the others and don't really like the effects and it quite frankly isn't quite as good as that pulsating one.God some days i will only have to turn the actual velocity setting up to like a fifteen and other days I will actually have to reach around twenty to twenty five in order to match and hopefully over ride that signal to the pain.but i wouldn't give up totally on it till you have tried the electrodes in many different configurations.and making sure that those electrodes are always criss croosed from each other so it goes thru the affected pain part.This is better than my oxy IR for my BT flares.thats what really suprised me the most.just play with the machine to see if there is some configuration that may help before giving up on it all together.I didn't get any real relief til after trying the electrodes in different ways til I found the one that worked the best.You have a very very wide range of signals,geez I do think that you can actually turn it all the way up to around 100 if you actually have to.i seriously doubt(at least I hope not)that I would ever have to go that high up since i am currently getting some pretty good results at no higher than 25,but who knows how things will be tomorrow with this crappy RSD stuff,ya know?good luck,marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-20-2006, 10:49 PM   #5
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Re: TENS treatments

Hi Everyone
First of all let's clear up something here. Michelle are you actually trying a big TENS unit or an STS or a microcurrents (MENS) unit? I'vw tried & owned them all. First of all a TENS unit is the worst thing an RSD can use because it will do more harm than good. It is the size of about a pager (do these still exist or has the cell phone changed everything?) It's amperage is say 1000 megahurts. No pun inteneded. Then you have the the MENS machine, which is about the same size, however, unlike the TENS-- which you apply to the injured area, the MENS unit you crisscross the wires, like Marcia was explaining, and you can use this unit for up to 8 hours at a time>>unlike a tens unit which you can use for about 20 minutes to 1 hour max. The MENS unit also has the pulsating switch mode, which is a good feature. The MENS unit uses one/ one thousandth the amperage as a TENS unit. Your 8 volt battery in a TENS unit would be gone within * hours of continuos use, unlike the MENS unit which woucld last about 48 hours. The STS machine uses 1/one thousanth of the MENS unit or we are talking 6 kilohurts vs the megahurts.
I hope you guys and gals are following this. Then there is the STS unit that is my baby and got me out of my bed and into the living. It cost me $3k vs the the TENS $400, and the MENS $100. It runs on electricity only. Instead of 4 electrodes there are 8. with 2 sets of lead wires, or you can use the inferatential side (Which I have never used because this is for Accute pain and only has 4 electrodes and are placed on the area like that hurts the most like the TENS & MENS. The STS option vs the IFC option in the machine (same machine) is about 12" wide by 7"high by 6" deep. The STS side is used to treat chronic pain, just like accupuncture. When I first heard of this unit I was on wc and of course, they denied treatment. A friend of mine, Kathy, who was on medicare started this machine in 2003, the year it was released on the market by the FDA. She came to our support group in crutches, 3 months later a cane, then while I was deterioating (bed-ridden) she was blossoming. I closed my wc case in 2004, and started a 10 day trial treatment on this machine. The first few days were h***. I couldn't even drive afterwards. Yes it dinged me. But after the 3rd day, I slept for the first time in 5 years! I was estatic. To sleep 8 hours without waking up was a good sign, and Kathy drove me every day. AS THE 10 DAY TRIAL WENT ON, my previouis PT ERIC, which I flunked PT with him 3 times prior, even noticed the change in me. I still had to use my cane(my RSD is in the upper extremity but was spreading into the lower, I was moving so much better, and my color was coming back into my face. About the headaches>> well after every one hour treatment, it literally felt like a mack truck ran me over. They told me not to cut down on any meds, which I didn't, in fact I ate extras. But I saw it as the ticket out of this nightmare and bought the machine. I have been using this for 2 years now, and I have cut my meds in 1/2 and sleep like a babe every night(except when the stress interfers>>my daughter's 4 collapsed lungs last year, etc. I take at least 5 treatments a week which take 1 hour, and I read the paper or watch TV. Since my RSD is in the upper extremity, which only 20% of us RSD'rs have, I do a 20 minute session on the feet and a 40 minute session on the hands. People who have it in the lower extremity do 20 upper & 40 lower. 4 electrodes are put on each foot with a color coded wire>>red, black, white and yellow. The hand treatment you place 4 electrodes on each hand. The placement is very important and the color wires are clearly marked in the book. There are 19 protocols, depending which area hurts the most, say interior knee or exterior knee. I follow the one for the shoulder area. I have another good friend on the Big Island, and she says after 3 years her RSD is in remission. She is a LMT and is healing all sorts of people with stomach problems, etc. You can't use this machine if you have any heart problems or cancer. But I am a whole different person who is getting her life back. People I haven't seen in awhile, even admit to me that 2 years ago I looked so out of it they thought that it was the end for me.
Sorry I don't mean to digress, but Michelle if this the machine that they are using, I'm very interested in helping you through this. Yes you can headaches, like I said I felt like a mack truck ran me over every night at first. It's your body's way of having the central nervous system fine tuned, which has been knocked out of whack from RSD! I'm not completley off my meds. but I am in the process of & I believe that I am having my RSD go into remission. I still get the burning pain, but the soma meds help with that along with the numbness. In fact the meds I'm cutting out are the pain meds. I am up to the setting 14 on my feet, but my hands, where the RSD is, I can't make it pass 6. When I first stared I was like at a 5 and 3. I do have a cyst on my left RSD wrist, and I think that has something
to do with it. Ask your PT which machine he is using. Are you on the 10 day trial? If it is the STS, are they using the IFC mode (accute pain) or the STS mode (for chronic). If you can answer these I will try and help. And don't ice that leg(duh) The headaches you describe could be what I called the mack truck effect. At first I had to sit for 1 hour after a treatment before I even could move. But it was well worth it. I'm very excited to hear back from you. I pray that this is the machine and if it is I would give it the trial run. But a point I want to bring up is that if you are having alot of IME's, you are in the process of closing your case. If they see that this machine is working for you, and is healing you, they might get off easy buying it for you, and setteling for less $$$. A point to truley consider. I'm the 3rd miralce on Maui, and I myself have healed 2 other women who lead full lives once again.
I truly believe it is an option all of us RSD'rs should look into, but not when they are close to closing their wc case or any settlement. You suffered so long with this monster that you should be compensated first for all that they put you through. I got $150K when I cliosed my case, but if you divide it by the 6 years is comes out to $25k a year where I was making $40k plus. But let me know-- I am anxious to find out abouit this big TENS unit. Aloha Skooze

 
Old 02-21-2006, 05:30 AM   #6
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Re: TENS treatments

just a quick question skooze,what is wrong with using the TENS on an RSD extremity,you kinda freaked me out with that sentence.am I causing something to be damaged or what?it just works sooo well and is the only thing that actually calms the flares from hell.i would really hate to have to stop so i am wondering what the deal is,could you enlighten me?Thanks for any info on this,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-21-2006, 04:51 PM   #7
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Smile Re: TENS treatments

Hi Marcia,

If the TENS is working for you, I'd keep using it. I've never heard that it's bad to use with RSD and my PT uses them on me.

Sharon

 
Old 02-21-2006, 05:22 PM   #8
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Re: TENS treatments

Hi Marcia and I am so sorry to freak you out. When I first got injured, and before RSD, I found a neuromuscular massuesse who was the BEST I ever had to work on my injuries. I had a shoulder and neck injury. She taught me more about how the nerves and muscles works, along with realigning my jaw from the myofacial pain I was developing in my left jaw, after I discovered I had RSD. She worked on me for 4 years, until she broke her neck in a freak bike accident. Anyhow, she refused to work on ANYONE who used a TENS unit becaquse it defeated the purpose of the work that she was trying to accomplish. She was trying to calm the nerves down, where she said, a tens unit was doing the opposite by getting them all worked up. The TENS unit never worked on me, in fact I hated it. But Marcia it sounds to me like you got good instructions on how to use the TENS unit from a licensed PT. When I re-read your post, you were being instructed to criss cross the wires, which I was taught to do when I got my MENS unit. And you experiminented by placing the electrodes until you received a comfortable level. I guess too what I was trying to say that, placing electrodes on the area that hurts the most (like places that you can''t touch without flying to the moon) is not a good idea. Anything that causes pain, we all tend to avoid. The way you are using the unit, and are you sure that it is not a microcurent?, on the pulsating mode would be the best, because you don't get constant stimulation while using it. So you are not constantly receiving a steady pulse form the electrodes. I personally have not known anyone with RSD who could use one. If it works for you and helps you in pain relief, you go girl.

I also pulled out my manual on the STS machine for Michelle. It says that if a patient is not progressing when starting treatment, try the next plan in the series. There are 5 placements for each target area of pain. Also if the patient is still not finding relief in pain, try a lower preset. Preset 7 & 8 are the lowest frequency. Then there is 1 & 2, then 3 & 4, and the highest is 5 & 6. . I am now on the 3 & 4 level. They started me out on the second lowest when I started and it was way toooo ssstttrrrooonnnggg for me. I felt best at 7 & 8. It also says to always deliver the lower body portion first. Michelle are they doing this? The 2nd sentence says occasionally a patient may report feeling nauseated during a treatment, particulary during an upper body treatment. Such incidences typically occur within the first few treaments. If nausea is reported, try reducing the insensity setting for that treatment and/or try using the next higher set of frequency ranges--for the lower body protocol only. I even have to think about this!! So if I were you I would try using 7 on the lower extremity and than 2 on the upper -- provided that your RSD is in your lower extremity. If it were me I would just stick with 7 & 8 both the lowest, because that is what my friends that were cured did and so did I. I did get a little dizzy when I started. I remember always eating lighly at first and taking me meds first before, and right afterwards. I also remember that I couldn't even drive there or back. It took the full 10 days straight of treaments, with 0ne Sunday off in between, and I just basically rested alot during this time. I like having the home unit, because A- I didn't have to get dressed and go for the 30 minute ride there and then back. B- I like having the machine at home, and at first I would lay down and watch TV. Kathy could always sleep through this. Now if I'm exhausted, I've been know to hop on the machine and wake up 3 hours later still wired for sound. The machine was on but the timer stopped the current. My other friend Tina, started giving herself 2 treatments a day, and that's when she really blossomed. Two was too much for me. So I hope this helps. I want you to think to about what I said about curing yourself before closing your case. If you have any ?'s juut ask away.
Once again Marcia, I apologize for misleading you. Aloha Skooze

 
Old 02-25-2006, 07:41 AM   #9
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Re: TENS treatments

Thanks for answering,I do feel much better now,lol.the thing is,when my nerves are running amuck in that knee by using the TENS and getting the amps up enough,it seems to actually counter those signals somewhat and thats when I get the relief,that criss sross pattern works wonderful for me as it goes right thru the bad area.i would never be able to actually tolerate a solid signal at all.but that alternating pulse is really good.My biggest problem with this particular knee is that I not only have RSD in there,I also have alot of structural problems that need surgery,just recently tore the damn meniscus while i had to put the surgery on hold because they found an anerysm sitting up against my brainstem.life IS wonderful.Besides the RSD i also have severe injury to parts of my spinal cord due to a surgery done on the inside of my cord.I now have,brown sequard syndrome,charcots joint,a huge flippin bakers cyst along with the tear that started the actual cyst formation,three areas of grade II and III chondro,the tibia keeps popping around in the lower part of the joint due to the charcots.alot of swelling that used to just be in the knee which is now spreading up into the thigh area,and of course the brand new meniscus tear.so whatever the TENS is doing,it is somehow calming down alot of inflamation in there from a ton of crap that are all inside this one tiny little knee.it is really unbelievable.the surgery is scarring the crap outta me too.god only knows what that will result in.

It's always something,ya know??Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-26-2006, 11:02 AM   #10
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Re: TENS treatments

Hi, and thank you all for responding to my post. I have been off for a while, the treatments really messed me up.
We tried all the things in the book, all different settings but the highest, and all the different placements. And they were always crossed on the placements. I took your posts to the therapist and he siad that you were saying to do exactly what he was doing, and showed me. I was on an STS machine, and they have never seen a person respond the way I have. I threw up, have severe headaches, and it actually made the leg worse! Now my arms shoulders and hands are acting up, getting swollen and painful, and my fingers get all pins and needles filled and blue! So they stopped the treatments, put me in the pool, and took me off the crutches and told me to use my chair. so I am now a few steps back from where I was. I am not responding well to any treatment. Meds keep getting changed, tryied Lyrica and got so sick I could not stand, and shakes so bad I could not be still at all. And now the STS made me worse, and the therapist has had people cured with it, so we know he is not treating incorrectly, and the blocks do not help for long, about 7 hours is all the relief I get, even then the pain is not completely gone. I am not sure where they will go next. I have a new doc who is very nice and treats RSD quite often. I even have spoken to people in the office who say that the STS and her treatment has tthem practically cured! So why am I not doing any better, but in fact worse? I am just disgusted with this disease. But i keep going on, I have kids and have to be here for them, even with a leg that hurts so badly, and another leg that is starting to hurt, and arms and hands that seem to be going like the leg. They still love me and need me, so I keep going. I am just so frustrated and feel like a freak because nothing seems to help like it does other people.
Thank you all for your help. I need it to keep going.
I pray that you are all doing well. Keep in touch! and thank you!
hugs
michelle

 
Old 02-26-2006, 11:46 PM   #11
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Re: TENS treatments

Gosh Michelle--sounds like me in physical therapy round 3!
I had the same problem in PT, which I nicknamed "Pain & Torture"! I threw up all the time. I wonder if you are at a bad timing spot in life? Now think about it. I was so bed ridden for 1 1/2 years going to PT, doing everything under the sun, to get relief, that I experienced the same symptoms that you did, and nothing but brutal attacks!!!! When I tried the STS machine for the first time, I couldn't function. I couldn't drive, let alone walk, with my cane! But I saw how it cured 2 of my closest friends with RSD., so Ikept going. On the 3rd day, even though I was dizzy as *&^@*&^@$#**. I kept going, and that night, I slept for the first time in 5 years for 6 hours straight!! Everyday I woke up and it felt like a MACK truck ran me down--and my body cried out louder of PAIN than it ever had before, but I kept going--because I saw the changes inmy 2 other friends. One is in complete remission now. But what you are describing sounds like me, before my time with the STS maschine, when I too, thought of my kids, cause I'm a single mom, whose dad just passed away. While in PT I threw up and had migraines, especially when they did traction on my neck. I'm sorrry that it didn't work for you because it turned my life around. It even stopped it from spreading to my lower legs. I believe you and your therapist--but nothing comes with a guarantee does it? I guess that's why they say to try the trial run out first before getting the machine. If it wasn't for the STS I would still be on my cane. However, I can't go beyond a 6 on my neck, pretty much where I started from 2 years ago. My legs though, I can go up to 14, which I believe has stopped it from spreading to my legs. Has anyone else,developed bumps on the outside of thir calves from RSD??? Blackened toenails?? Those are my symptoms now in the legs, but the RSD in the neck, remains, let's say stable. It hasn't got worse or better, but it is stable. That with my morphine, gets me thru the day.. I guess we gotta do what we gotta do to get through the day, and maybe now it's just being a mommy to your kids and appreciating what you have. Maybe that's all the strength you have in you for now. Give yourself a break, and then try it again later??? Just cause it doesn't work now , does n't meanit may not work later.
I right now, am dreading my MRI results, that 6 months ago showed up abnormal with possible tumour in the neck at C6-C7, where my surgery was done, 5 years ago. Each MRI they get more negative. I pray to GOD everynight and every morning when I wake up, that everything will be OK. Hope this helps. Aloha Skooze

 
Old 03-07-2006, 10:04 AM   #12
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Re: TENS treatments

Thanks Skooze, for giving me hope that it may work later. i am trying again since my arms and hands have been getting worse. my doc is doing a stellate ganglion block next week, and hopefully that will not stop the pain in arms and hands, cause if it does, that ,means the rsd has spread. i can't stand this most days. plus my doc wants to do an scs trial, and she has made me an appt with Dr. Schwartzman in Phila******a, doesn anyone know about him? i am going to do some research today. but the appt isn't until november of 2007! that was the first appt they could give me. i dont know what is going to happen unitl then.
but for now, i am going to do pool therapy, then a short sts term. we'll see if it works. and pray a whole lot. prayer, duragesic, and morphine get me thru the day. i am trying so hard to have a life, to get some things done at home like dishes and laundry, but most days unable to do anything.
skooze i pray that your neck is ok, and that it is not what we cannot name. keep us posted on what you find out. hang in there, i guess that is all that we can do.
hugs
michelle

 
Old 03-07-2006, 08:54 PM   #13
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Re: TENS treatments

Hi Michelle
Sorry to hear you having such a rough time and all as we all are. Dr. Swartzman is a very well reknowened RSD specialist and it doesn't surprise me that he has that long of a wait! But it also wouldn't surprise me that he could give a negative report that some of us on this site have seen the Man, and they said it was in our heads. But we got to put that positive out there--right??
I was thinking about the machine and that you have RSD in the lower extremity--correct? I use the one treatment plan for the shoulder, even though my injury is in the neck. The one for the shoulder also helps the esophogaus, and I used to have bad acid reflus from meds, stress or whatever. Well it also cured that, but one electrode placement on my right wrist (My RSD is in the upper left), calls to place the lead on my right wrist. This caused SOOOOOOOO much intense pain, that I move it to be the same as the left wrist(on the palm center) and that's what worked for me. Those electrodes are very sensitive and moving them 1/4 of an inch makes a BIG difference. Can you tell me which plan you were using? My friend whose RSD went into remission, is a licensed massage therapist and cures alot of people with this machine, not just RSD'rs. She might have some insight that might help you, cause she treats alot of people in pain.
I just pray that something will work and never give up hope. Gosh you sound just like me 2 years ago when I was pretty much bedridden. Even the food ads on the tv I had to mute, cause thought of food just made me ill. So I have been there. Thanks for your prayers on my neck. I see my neuro on Friday. The results read horrible. But I'm just so indecisive about having a biopasy on my neck done because I'm moving so well. But who wants to wake up 2 years later and find out that you have 3 months to live?? I guess we just need to put our troubles in a bubble and blow them away. I'm glad that you at least have the morphine and patches. Which I just remembered-- I started the STS machine first and 2months later I started on MSCotin. At first 30 mg than 180 mg a day. That with the machine got me moving. Maybe you are on too low of a dose??
Hope this helps and I pray that you prayers are answered. Aloha Skooze
PS> Call Dr. Swartzman's office and ask if you can be put on a waiting list in case there is a cancellation!

Last edited by Skooze; 03-07-2006 at 08:56 PM.

 
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