[jenniegump]

hi all,
hope everyone has had a good day pain wise. i went to ot fri. and my therapist was concerned with how much i could not squeeze with my hand. since my accident, every week or so my ot takes measurements of how much or little i can squeeze, grab, & pinch with my hand. also, we measure the extension of my elbow. she said that she was concerned because i should be able to bend my fingers more and grasp harder. she is worried because she said if i don't push through the pain and get my fingers working better the rsd could turn much worse. i do understand that and god knows i am trying. but she says if it doesn't improve she is going to try the tens unit (the electrical current thingy, i probably spelled it wrong) and i was in there while another gentlemen was going through it and he was just moaning in pain. it really freaked me out. now, that said i have used that little machine for menstrual cramps and it worked wonders, but i am scared to death to use it on my rsd hand! have any of you tried this to break up the pain cycles and stiffness associated with rsd? please let me know if u have and if it was worth the pain.

thanks

[reruho]

Jennie,
I had a PT use on a TENs unit on my neck and left shoulder. It was not uncomfortable. After 10 minutes, they followed the treatment with a massage. It was a deep muscular massage and I suspect it was a trigger point massage. I enjoyed the massage.

But, this treatment was done by a PT that told me I did not have RSD, that I had a neck and shoulder injury instead. I left the appointment feeling good but was in pain within 30 minutes. This treatment undid my last block. I only had one treatment from this PT and refused to go back.

I don't think the TENs unit hurt me. It was the PT session from an arrognant PT practicing medicine without a license. I told my doctor this guy was a quack. The bad thing he is part of the PM clinic I used to go to.

Reta

[Shay70]

Hi jenniegump,

Transcutaneous Electrical Nerve Stimulation (TENS) is supposed to help block the pain, not cause it. If the gentleman using the TENS was moaning in pain, it obviously was not working! TENS is supposed to help block the pain through what they call the gate control method or endorphin release. Not everyone can tolerate it.

I broke my wrist and ended up with RSD in the left hand, wrist, and just slightly above the wrist. I was diagnosed early and sent for OT immediately. My OT is a certified hand therapist with experience working with RSD patients. The experience with RSD is very important. She is very aware of what we go through both physically and emotionally. Your fear is not uncommon. Believe me I know.

She suggested TENS to me about three weeks into therapy. She explained that we could try it to see if it would help me get through therapy. At that time my hand/wrist was frozen in a claw and I could just move my fingers a little. The first thing she did was to gently apply the electrodes to see if I could tolerate them. That went well. Then she told me that she was going to turn it on and slowly increase the intensity until I felt the first electrical pulse. I was to tell her if it increased the pain and she would turn it off immediately. I felt the pulse and I was fine, no increase in pain. Then she said she was going to turn up the intensity very slowly and when I felt any discomfort from the TENS I was to tell her and she would reduce it immediately. We did that and found an intensity level that I could tolerate. She gave me some time to adjust to it and then began therapy. It helped and my insurance company eventually paid for one for me.

The TENS helped me in several ways. It helped control the pain so therapy and all the exercises and stretches I had to do at home were tolerable. It also continues to help with reducing edema and color changes when I have a flare. Yes, for me it worked.

Before you allow your therapist to hook you up, tell her that you want to know every step of the process before she starts. If it causes pain, you should be able to tell her at any point and have her stop. Also be aware that therapy is a long process. I have fairly functional range of motion at this time but it has been almost a year of therapy. When I have a bad flare, the stiffness is difficult to overcome but I have the knowledge and the tools to address it and can return to a pre-flare state.

There are other things that can be done to help with the pain. Have you had any nerve blocks? I had some of them, but I would try the TENS first since it is not invasive. Be sure your therapist is experienced with RSD since therapy should not be wasted. Time is important with this condition and unless you have really good insurance it can be expensive!

Remember don't allow anyone to do anything unless you have the final say in any treatment. Be assertive. Even with the TENS, therapy can be painful but not so bad that you want to run out the door. We learn to tolerate what we must but needless suffering must be prevented. Do all of the home exercises religiously and you will see progress. I hope this information helps you make a decision about the TENS. Let us know how things go. God bless.

Shay

[reruho]

Shay,

I broke my wrist and my RSD went up my arm and never down. My worst pain is in my upper armand just above my elbow. On my highest pain days, my hand will hurt some, but it is nothing like the upper arm. It is crazy the path this monster travels.

Reta

[jenniegump]

hello,
thank you for your advice and knowledge. i am still debating about the tens unit. it sounds like it really worked well for you, that's wonderful. the guy who was moaning in pain didn't even have rsd so that is why i couldn't imagine how we would feel with that sensation. my therapist and i have spoke about it a few times and so far we are still putting it off. she is really great though with making sure i am comfortable. i know therapy is a long process and can be very painful but i am sticking with my homework and weekly sessions. we did discuss nerve blocks today and she said she is not a big fan of them. she felt that aggressive therapy is just as effective, if not more effective but much less evasive. i like that theory.
i had the pleasure of sitting in the social services office all day today after my therapy session applying for medicaid to pay for all of this. it is very expensive. 24 sessions was $1700! i can tell a tremendous difference however from when i first began. i am also applying for disability. i have been a server/bartender for most of my life and without the use of my right hand and i'm right handed there is no way i can go back to that. i don't know if i will be approved but i have to at least try.
you know, i asked a lot of questions today in therapy about rsd and my therapist is attiment about the power of positive thinking. i do agree but we also have to be realistic. i think taking this disease one day at a time is crucial. we can't look into the future and say to ourselves that there will be a cure for this one day, but we can hope and pray and know that there will be some form of success in treating rsd, even if it's just how we let it affect us mentally on a day to day basis. i thank forums like this for the support that is offered here. that alone is a blessing.

blessed be, jennie

[miley7]

Hi I use tens unit now it does help with the stiffness a tens unit stimulates the nerves I also use the muscle stimulator which is a different machine. if these machines are turned up to high they will hurt emencly. ot and pt kept telling me that I should be doing more and more they pushed me so hard that it was like starting all over when I stoped going. I talked to my dr about it and he wrote me a script for a home excerise program. I do the exercises at my own pace I push myself when I can and don't hurt to bad. were you hurt at work how did you get rsd. hope to talk to you soon. Miley

[reruho]

Jennie,

You are doing the right thing by questioning everything. Since this disease is so poorly understood by most of the medical community, I would recommend taking a cautious approach and doing lots of research. I asked lots of questions as my doctor made suggestions of procedures. I researched it and then asked others about it. Sometimes these websites don't tell you how painful a procedure will be.

Do not let anyone rush you. I become very supicious when people start rushing me and I start doubting things.

Reta

[Shay70]

Jennie,

It sounds like you have a therapist I would trust------talks to you about options, doesn't push you into anything, and makes sure you are as comfortable as possible. I agree with her about the blocks. I didn't like getting them and I hated that a day later I was in worse pain when it stopped working. They do help some people, but I am grateful that my therapist talked to me about the TENS. I would have preferred less invasive to begin with but my doctor ordered the blocks and I knew nothing about my options back then so I went for them.

I wish you luck with your struggle to have medicaid pay for your sessions. I did not realize what good health insurance I have until the RSD. It is a blessing not to have that worry.

Keep working hard and 'believe' you will get reasonable function in your hand. It is possible. I have come a long way. I do agree with your therapist about the value of therapy. The word aggressive scares me because I visualize someone pushing and pulling your joints without mercy. I know what she means though. My OT always says that there is a middle ground----don't push hard enough and you get nowhere; push too hard and you end up with more pain and swelling and less range of motion than when you began.

Good luck and God bless.

Shay

[Shay70]

Reta,

I agree with you that RSD is a monster that travels crazy paths. I look at it as a sadistic demon that tries to take over our bodies. When I first started to have a good day here and there, I would become elated thinking that this thing was ending. Then the next day the demon would be back and I would be really down. For the last two months I have been able to look at a good day as a respite and I enjoy every minute of it. Then I am ready to do battle with the demon again (like we really have any choice).

Take care and have a 'good' day,

Shay

[jenniegump]

miley,
i was hurt in the most unusual manner. I was working in Love Valley, NC at the Silver Spur, bartending . after twelve hours of work and knowing that i had to be back at work the next day at twelve I stayed at my friends house because she lived very close by. I went to sleep at about 2:30 and at 5am I woke up on the ground. I had gotten up out of the bed and walked out the front door and literally walked straight off the porch, which was about a 7-8ft drop. Let me just say it was a rude awakening. I really did some damage to my fingers, wrist, and elbow. My orthopedic surgeon said he hadn't seen an injury like mine ever. he did two surgeries on my wrist and did a carpal tunnel surgery and the swelling that came after was ridiculous.
My surgeon mentioned rsd from the very beginning after my surgery and the cast coming off, which after the stories i've read makes feel very thankful that he was aware. However, he didn't want to diagnose me until after 6 wks of therapy. well, he diagnosed me and i have to go on from there with knowing that my life has been changed forever. my mother who i am living with right now ( i'm 33). has been a nurse for over twenty years, thank god. she knows a lot of things but she had never heard of rsd until i was diagnosed. my mom is very concerned but she knows i am stubborn, hard headed, and determined. she also though is realistic about this. i thank the lord and lady for her in my life. i pray for us all suffering through this because it is very hard to explain and impossible for our friends and family to be able to truly relate. i have survived this far in life by looking at the glass half full rather than empty and i plan to keep doing that, no matter how hard some days may be.

blessed be,
jennie