Tweeting an EMG: Another Way to Research Pain

Really important stuff that I read last week, while researching pain scales, will not be on the blog today. I’ve been thinking a lot about how differently a disease affects us and whether we can honestly communicate about that. When Dana asked for resolutions at the weekly #HCSM (healthcare communications in social media) chat, I said I want to be more fearless, but I’m afraid to say so. Then something tied that all together today.

City sunset AtlantaMy friend Bob had an EMG today, Tweeting during his test. I’ve heard several people say an EMG doesn’t hurt at all. And I’ve heard several others say it does. Including Bob. After it was over, I Tweeted, “I’ve heard sevrl varying reports of EMG exper. It must depend upon the actual TISSUE BEING TESTED & DX in QUESTION. #StatingObvious.” Of course, the machine or test operator could also make a difference.

About a decade ago, I had an EMG and nerve conduction study. No one hinted that it might hurt, so my expectations were not bad. The doctor insisted on clothes being removed, so I insisted on a nurse being present. It was very painful, but it mostly bothered me that I had not expected to be lying in a paper napkin for an hour in such humiliating pain. And then walk out to my kids in the waiting room and drive home as if nothing happened. That part was as bad as the pain.

In my case anyway, over a dozen needles were inserted from my neck to my hand. That hurt, but I tolerated it. They said that my nerves were sending information to the machine. Then more needles were inserted. This time, they said that they were sending information directly to my nerves and recording the response. Each of the new needles sent a shock (pain) and they recorded my response. As a mother of four at that point, I’d learned to be docile in response to pain (childbirth). I only breathed deeply as tears dripped across my cheeks. But, I had no control over what my nerves said.

Some people say EMG’s don’t even hurt. I looked around on websites after Bob’s test, and there is a difference of opinion. I’ll stand by my previous observation: sometimes they do, so it must depend upon the particular situation. I know – brilliant, right? But at least I assume that it is whatever the patient says it is…

My EMG results were abnormal. I’ve had pain from the cervical spine that travels down my right arm for many years. The EMG shows that my “muscles are denervated,” whatever that means. The doctor had no idea how to use that information to help me in any way. It was the end of the road for him. He said nothing could be done and he had no idea why it was abnormal.

Now that I have a diagnosis and I know about RA inflammation in the cervical spine, I have an explanation for the pain. I even have a solution of sorts, Radio Frequency Ablation.

That reminds me of Bob’s response: “You learn with age. Many things.” I am. I’m learning that certain things hurt some people more than others. That unpleasant experiences are worse when you don’t know what to expect. That even if tests are positive, there might not be a useful answer. That some doctors know more than others.

Postblog: About the un-resolution. I don’t make New Year’s resolutions because every day I resolve to do my best with what God gives me and leave the rest to Him. But I hope I’ll continue to be kinder to others and myself. And be more fearless in speaking the truth.

NOTE: be sure to read Health Central’s post today by Lene! I spent about an hour with her this week. I’ve followed her writing for about 3 years. What a thrill to be interviewed by a friend I’ve known from afar.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

24 thoughts on “Tweeting an EMG: Another Way to Research Pain

  • January 11, 2012 at 8:35 pm
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    K,
    I’ve never heard of somebody having an EMG that didn’t hurt. BTW, my legs are still stinging, as though the needles are still in there (more than 24 hr later)! Glad you enjoyed my live tweeting. Sorry it brought back bad memories though..

    B

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    • January 11, 2012 at 8:37 pm
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      I’ve talked with so many patients, I guess I’ve heard it all. But, yes a few told me it was no big deal. Of course I’ve met 2 women in my lifetime that said the same about childbirth – I’ll bet most women would beg to differ… like we always say, “we’re different!”
      Had some great discussions w/ Tiger today about how genes affect us and how much it takes to overcome genetic tendencies. Fun topics.

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    • January 11, 2012 at 8:38 pm
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      oh and by the way… bad memories that I never had the courage to really share before. So that’s good – if it’s my story, I can tell it. That’s what you showed me yesterday.

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  • January 12, 2012 at 1:21 am
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    I’ve had many experiences like this. Usually the test is not supposed to hurt at all, or barely, and I’m in a lot of pain. Some very few things, like a cortisone shot, cause me the very smallest amount of pain when they hurt some people a whole lot. I think again, we should trust what people say.

    I think the people administering the test should give out the information as something like “80% of patients tolerate this test easily, but for about 20% it can be more difficult. Please let us know as the test begins how you are doing”.

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  • January 12, 2012 at 10:13 am
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    I had this test years ago, sure hurt when I had it! But they aren’t going to tell us it hurts like a sun of a gun, no one would show up for the test! I do agree however with the previous post, let us know there is a possibility that it might so we don’t think we are the weird one or that there is something wrong and so we can prepare ourselves mentally to deal with it.

    I am currently working on my response for SS disability. How do we get them to even get a glimpse of our daily lives?? How do I explain how at my last DR visit Monday I was in a really good phase because of not being active and just resting over the holidays. But that by the time I drove home after walking all over the VA hospital I have had several rough days, not sleeping well and having to take extra pain meds. You all get it, wish they could.

    Kelly, can you direct me to the post where there is a break down of success with biologics? I think I should include that in case the judge watches a lot of TV and buys into the commercials. Thanks!

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  • January 12, 2012 at 10:18 am
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    I think it depends on the experience of the person giving you the EMG. I have had several, all given to me by my neurologist. I was given them to test muscles due to deteriorating discs in my neck. Since my neuro knew my health situation from top to bottom, he was able to gently apply the stimulation just where he thought he needed to, to get the results he needed. I did watch a friend of mine get an EMG as she was afraid to go by herself. Hers did not go so well, but stimulation was applied in many places and aggressively.

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  • January 12, 2012 at 10:48 am
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    I guess I’m kind of lucky in that I was a Radiologic Technologist for 35 yrs. before I had to quit working about a yr. ago. and I know exactly what every test is going to be like beforehand. There is not a test I have not performed myself on hundreds of patients over the years (I sure hope I treated any who might have had RA with as much care as I think I did for everyone!) or seen performed as in the case of what I would call an “obviously” painful test called an EMG. Anyway, this gives me what I feel is a great advantage in deciding about testing, not only what the test is going to be like, but also what diagnostic information it will actually provide for the rheumy.

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  • January 12, 2012 at 10:52 am
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    When I had mine done, I sort of knew what I was in for because my big, strong former Marine husband had to have it done and he said it hurt so bad he wanted to rip the needles out and stomp off, esp. after being told there’d be little to no pain.
    Yep, it hurt. And the sad thing about it, the doctor giving me the test was totally unsympathetic and rather gruff, and no, I’m no whimp.
    Pain is a funny thing. I truly believe it’s how we’re wired, how tired we are, what mental state we’re in on any given day. Maybe even what the weather is like from one day to the next. That’s why this discussion on pain is so interesting and why the so-called pain charts really don’t give an accurate view as to what is really going on.
    With RAD, as we all know, one or two joints can be very painful but other joints just sore and it can switch around day by day, even by the hour. So it’s very hard to pin point a systemic disease like this.
    And Kelly, after I was finished, I walked to my car, sat down, and had a little cry. I hate feeling like doctors look at me as a fraud, and that’s how it felt. Oh well. Ce la via

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  • January 12, 2012 at 10:56 am
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    Tweeting an EMG is right on target on many levels and it is experiences such as this over a life time that help contribute to the mental anguish which can accompany chronic disease. I’ve notice when I am validated and treated with respect and kindness that my pain is more acceptable. I too have had experiences such as this. Once when having an epidural cortisone spinal injection I felt a pop and a pain that I had never had before. I immediately told the doctor on the operating table that something was wrong the minute he placed the needles and I told them in recovery that something new was wrong. They all met me with silence and told me I was fine, it was all in my head and to go home. I knew it wasn’t. I ended up with a spinal fluid leak and had to have a patch 10 days later after suffering almost two weeks with a post puncture migraines and not being able to get out of bed. This was a doctor who was highly recommended and respected. Lots of people have these treatments and they frequently go quite well but when they go wrong and the patient is discounted, it can mark you forever.

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  • January 12, 2012 at 11:55 am
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    I have been watching your posts and I believe you speak your mind and that is good. Not being a sheep and talking out truthfully about chronic illness means strength – inner strength. I know a lot of people who have their inner strength zapped by meds, by docs opinions, people who run the tests, I am a retired RN and I have had a lot of experience with patients and how they are so very differant. Pain is unique to the individual, knowledge of what is going to happen speaks volumes to the preparidness of the person undergoing the test. I have not known an xray tech nor a person running a test to be very explicit in what is about to happen, they are rare if they do. I love your happy face signs for the pain scales, I tell my clients to do a calendar journal. Everyone has a calendar, everyone can draw a happy face circle, each day I have my clients put up on the calendar just how their day was. There is an important fact here: your brain only deals with what it absolutely has to deal with at that particular time, I dare say that is why women have more than one child!!! The memory remains but not the true memory of just exactly what it was like, pain is like that. When a body is trying to heal esp from a chronic illness such as RA it is ups and downs, most healing is in “baby steps”. Each day is differant, on a calendar you might have the first wk at all 9’s and 10’s in crisis, then healing comes on and you might have 3 days at an 8 and 4 at 9. When healing continues you will see more and more 5’s an 6’s, this is wonderful for the mind to see how the days truely were a tiny bit improved, that makes inner strength grow as well as the subconscious be strong in knowing that the body will win this war. It is a reminder when placed on a calendar just how your progress is being made because you will not remember how it truely was 2 wks in the past. My scales were all 7’s and 8’s and now they are 1’s every day. I am blessed to be winning my battle. It is sites like this that make the body stronger, continue to speak out and try to find the true root of your chronic illness. I wish you all SUN today!!!! Peggy

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  • January 12, 2012 at 12:56 pm
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    RE: Radio Frequency Ablation
    I have had it done 3 or 4 times per side on my lower back. My pain doc said I have facet joint arthritis and that was one thing that can help. I have read quite a bit about it and talked to various people since I first had it done in 2007. My pain doc and I had a deal, he wouldn’t take time to tell me all the details about procedures because I would research them anyway and that would save him time. Then IF I had questions, I could ask and he’d be happy to answer them. He did give me oral Ativan or Valium to take beforehand and I am glad he did as I’d not have easily gotten off the table had I not had something to relax me before laying down on the table. I won’t go into all of the details of my experiences here. If you’re interested, each time I had it done, I posted on my blog. Here’s a link to all of the posts. http://wayneyp.blogspot.com/search/label/RFA
    In talking about it after I had it done, a lot of people told me they found it extremely painful. Some said they didn’t get enough relief to go through that pain again. A few others said they’d only do it with IV twilight sedation. We had a scheduling mix up one day and I thought I was having the nerve block that my doc did before doing the RFA to make sure we got the right nerves. That was not painful at all to me so I never took the Ativan when he did that. I got to my appt and they’d scheduled me for the RFA not the block. My dr gave me the choice. He could get the stuff he had for the RFA removed from the work area and set up for the block or he could do the RFA w/o doing the block since it was a repeat procedure. It’d been 12 months since the previous one. But, I figured if he was comfortable doing the RFA w/o doing the block, he was confident it was the same nerves. He wouldn’t have let me choose had he had any doubts. I said let’s go for it and so I had the RFA done without taking any Ativan. I was fine except for one issue. Laying on my stomach for close to an hour without something to relax my body. That was when I had the hardest time getting up from the table. In fact, he was concerned about me until I explained it. I didn’t find the RFA very painful at all. I was able to go off into another world of my own at times. That kinda concerned my doc as he had asked a question and I never responded until he kinda shook my shoulder.
    I typically get about 12 months of relief from the unrelenting pain in my back when I have each one done. We usually do the right side then a few weeks to a month later we do the left. He does 3 nerves on each side. I cannot for the life of me remember which level the three nerves are at.
    Because of being in the hospital and then the nursing home for a total of 3 years, I haven’t had it done since late 2007. I was due for it late 2008 but had bigger issues to deal with. The time I spent in bed meant my back wasn’t hurting as bad because of the facet joint involvement. But now that I am on my feet again, I feel it at times. It’s not so frequent that I am in a hurry to have it done, but only because why do it before it really needs done? I won’t let it get to a point where the pain is awful, but more frequent than 3-5 days a month. It was really bad when I started standing again after being off my feet for close to 3 years. Then going from walking in parallel bars to using a platform walker caused it to hurt for a week or two. Each time I changed the item I used to support me I had lower back pain. But it let up after I got used to the change. Now, only if I push too hard is it a big issue.
    I cannot sleep laying down at all. I had to be at a 40 deg elevation because of the feeding tube. The doc ordered that. But at the nursing home it was 30 deg. I got so used to that that as my back got used to it, it was extremely painful to lay flat. One aide did not mean to leave me for the 10 min it took to get clean sheets. It took her longer than usual. By the time she came back, I was fighting tears from being flat on my back. That was when I couldn’t turn on my own or I’d have changed position. She felt horrible. But she didn’t know, I didn’t know it would be that bad. From then on, a sign above my bed read “Please roll head of bed up until it will no longer roll up.”
    I now sleep on the couch because I’ve not gotten my hospital bed moved in yet. And I sleep with my back against the arm of the couch so that I am sitting straight up. I’ve slept all night in my wheelchair before and was comfortable because of my back.
    I may be adding to my RFA posts in the near future as I go back to the care of my pain doc after the doc at the nursing home felt ok managing my pain meds. He was a wonderful doc and I planned on trying to get into his office after I came home, but he retired. He was probably in his late 60s or even late 70s. Still sharp mentally. We worked so well together. He was one of those docs with whom you’re their partner in your health care.
    The EMG I had done was not overly painful. But I barely remember it because it was at the start of the time when I was starting to not be alert.

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  • January 12, 2012 at 2:06 pm
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    Funny you talk about this. I was just in to see my rheumy this morning and I told her my arms are going numb when I move them a certain way. She thinks it could be related to my fibro or a certain type of carpel tunnel but not the normal carpel tunnel. Anyway, she said there was a test she could do but it is very painful. She didn’t say, but I think she was talking about the EMG. She said cause it is very painful she didn’t want to do it right now especially with my fibro pain at the moment.

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  • January 12, 2012 at 3:43 pm
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    Kelly, I had an EMG years ago on my leg/foot. My foot kept falling asleep. They put needles all the way up my leg. I felt like I was being tortured every time they would zap me. I cried squeezing the pillow I was laying on face down. I am not sure I could do it again. I too had natural child birth with no drugs. I have always thought I had a high tolerance of pain but that EMG about killed me!

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    • January 12, 2012 at 4:37 pm
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      Teresa, since both of ours were several years back, can I ask you whether they shocked you with taped on electrodes or needles? Some are also commenting via Twitter or email, adding more information about how the test operator can control the amount of shock delivered. No, I wouldn’t do it again either – especially since it was a dead end, even with a “positive” result.

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  • January 13, 2012 at 8:14 am
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    I had an EMG test done several years ago to identify the damaged nerves that were causing pain and numbness in my thigh and leg. They used needles and yes, it was painful, but not dreadfully so. The Dr. who administered the test could control the amount of electrictity used and pretty careful to not hurt me more than was necessary to get the information he needed. I did experience significant pain when he got to the damaged nerve that was causing all my pain. They were pretty clear up front that the test was painful. I have had the nerve damage successfully treated with cortisone injections but may eventually have to consider surgery. Knowing exactly which nerve is involved did help in my treatment.

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  • January 13, 2012 at 11:03 am
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    I know two women with neuropathy who have both had nerve conduction tests and who both said it was like torture. Both had pain for quite a while afterwards and both were in an environment during the tests of very little concern for the pain the test caused.

    I had a wonderful time talking to you (and got to call it “work”). One of my favourite interviews!

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  • January 21, 2012 at 3:17 pm
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    One of the issues this post raised for me is simply the issue of testing when there is no treatment anyway. Another, is the issue of using tests to “prove” we are getting better or worse. It makes me wonder what the docs are really thinking. Do they believe we just magically appear in their offices to put on a show for them for ten minutes, and then disappear? Don’t they realize that for us, we are living with pains and disabilities that can affect us every minute of every day? Don’t they realize that we are just like them? That we want to participate fully in life. That we would like to feel that we are contributing in some way. That we don’t want others to see us as disabled. Don’t they realize that we would like to go out and be able to have fun without paying for it for the next week? Don’t they realize that we want our partners to find us energetic and attractive and not to feel that we are a drag to be around? Why am I always made to feel that when I am in the examination room, I have to “prove” myself in some way? I don’t need a blood test to tell me how I am feeling. Why can’t the docs just listen to us and have a dialogue with us about treatment options? What the heck are they being taught in med school? My hands don’t look too bad today. That doesn’t mean that my elbow doesn’t feel like it’s being sawn off. It also doesn’t mean that 3 days ago my finger joints weren’t so swollen the skin split and bled. I personally prefer to think and behave as normally as possible. I try not to focus on the pain, fatigue, chills, etc. So, when I am talking to my doc, and I am telling her what’s going on, it’s not because I am constantly feeling sorry for myself or trying for sympathy. I am simply trying to get medical help. However, I must say that I no longer believe the docs really know how to treat RAD in it’s many forms. They only know how to order tests. As you can see, I’m feeling pretty frustrated today. I just wish there was a movement AMONG DOCTORS to listen to us, take us seriously, and partner with us to help us live the most pain-free productive lives we can.

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    • January 21, 2012 at 6:03 pm
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      Well said, Beverly. And I hope a lot of doctors will read your comment and think about it. There are good doctors who are working with us in our rheum movement and there are many other doctors who are also involved in a movement for participatory medicine. Have you heard of the Society for Participatory Medicine? This is definitely not a movement of patients versus doctors, but good medicine versus bad medicine!!

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  • January 22, 2012 at 2:18 pm
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    Thank you Kelly. I will check out the Society.

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  • January 28, 2012 at 1:24 pm
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    I just had an EMG and Nerve Conduction Velocity study done Jan. 23. The NCV was performed by a technician with buttons, gel and a little handheld device that for lack of a better word looked like a stun-gun. The NCV was no fun, but the technician got me pillows to get comfortable, talked with me throughout and explained exactly what she was doing. The tech did tell me that people tolerated the test very differently, and many were tearful before it was over. I, on the other hand, did okay with no lingering pain. (NOTE: the technician has Psoriatic Arthritis)

    Conversely, the EMG was done with needles – upper extremities and neck – and performed by the neurologist herself. I don’t mind needles so the pokes weren’t a problem, but I experienced deep muscle pain in about half the places she tested.

    It is now Saturday, and I still have big knots and bruises at half the EMG needle sites.

    Is EMG worse than NCV for everyone? I have no idea, and I don’t think I could prepare someone else for both tests based on my experience. While obviously the two tests are very different, I believe my experience of each test was significantly different because the personality and compassion of each person administering the test was significantly different.

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    • January 31, 2012 at 8:28 pm
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      Thanks for sharing. There are obviously different types of equipment used for the test and a large variation in the operators also. The way you and others talk about pillows or blankets or heat lamps is unfamiliar to others of us – as is the method of the procedure. I’ve heard many patients on Facebook and Twitter talk about how they felt the operator was “torturing” them and being uncompassionate. I never thought intentional infliction of pain was at fault in my case, but I will say the man operating the test was not at all concerned with my comfort. I was cold and uncomfortable in a too-small paper napkin & was told NOTHING about what to expect. I just breathed deeply while tears ran across my cheeks and I wondered when it would end. Also, if you read my previous comments, it was all – both parts of the test – performed with needles – perhaps because it was so long ago – I don’t know.

      Reply

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