Extreme Hypersensitivity After EMG

[shannah]

My son had an EMG a couple of weeks ago where they test the nerves in the body (mainly the legs) for their response. The technician said it would only be annoying for him. I suspected otherwise.

It was extremely painful for him. To watch the experience, you'd think he was having convulsions every time the signal was sent. This test has left him extremely hypersensitive now.

Since the ME, he's always had the hypersensitivity to light, sound, and smell. Now it is even much more heightened and doesn't seem to be receding. The slightest unexpected noise leaves him badly startled for an extended period. The slightest bump of his legs or arms leaves him writhing in agony. The slightest light, even moonlight, filtering into his room at night prevents him from sleeping.

Magnesium doesn't seem to making a difference, at least not yet.

Would appreciate any suggestions.

Thanks.

 

[Snowdrop]

@shannah

I have no advice but I do hope there are others out there who can chime in on their experience with this test and what to do for your son.
I am very sorry that it has turned into an awful experience with lingering consequences. I hope it gets sorted and the symptoms either calm down or you find something that helps.

May I ask what prompted the Dr to request the test? How long ago was it and have you tried anything for the sensitivity yet?

I have a personal investment in hearing answers here as I went for a EMG and the test lasted less than a minute and I was crying in pain (very unlike me--the crying bit)They had to stop the test before it had really begun, I think they were just calibrating the machine. And now I am re scheduled at a different hospital. Supposedly, the best in the city whose Dr has been apprised of my situation. But your son's experience does not bode well. I am now a little apprehensive.

 

[shannah]

@Snowdrop

Thanks for writing. We're in Ontario as well, not far from you.

I'd like to say something that would calm your apprehension Snowdrop but I don't know what that would be.

There seemed to be no difference to my son between the calibration and when they actually started the test. So I don't think it got any worse at all but probably not better either. Perhaps having somebody with you would help. Also, having someone to drive you would probably be a good idea just in case you're not doing well afterwards.



The doctor ordered the EMG because my son, who is only in his mid 20's, is losing muscle mass.

If there is impairment in the conduction of the nerves, I'm not exactly sure how that would fit into the picture. I've been meaning to research it. That 'to do' list is frightfully long though.

I'm sure that for the average person, the EMG would be, as the technician said, only 'annoying'. She seemed surprised at his reactions and kept saying how annoying it was. I finally interjected and told her that he was not finding it annoying at all but rather, extremely painful.

It was necessary for me to rub his head, hold his hands and talk to him the whole time. He was stiff as a board and like I said, initially I thought he was convulsing.

Afterwards he was very pale, faint, visibly shaken, not well at all and left with this extreme hypersensitivity. For several days afterwards, he mentioned that the spots where the needles were placed for the test felt bruised.

It's taking a long time to recover.

Are you comfortable sharing why you're having it done?

 

[ahimsa]

It was extremely painful for him. To watch the experience, you'd think he was having convulsions every time the signal was sent. This test has left him extremely hypersensitive now.

I am so, so sorry that your son had to go through this. And I am shocked and dismayed at whoever told you that the EMG would be annoying at most!

I had an EMG many years ago before I had any diagnosis at all. I don't remember the year but it was sometime in the early 1990s. I got sick in early 1990 at age 29 so the EMG was done when I was in my early 30s.

Depending on where the probes were put the test was either mildly annoying or excrutiatingly painful. If I recall correctly the ones on my hand and arms were not so bad. The ones on my lower back and the top of my foot were horrible. I was crying in pain but trying to be brave. There may have been other probe locations. I have tried to block out the whole experience.

What made the test at least tolerable for me was that the person doing the test was very sympathetic. I don't think he was an MD. He was a technician or nurse of some sort. At any rate, this guy understood that it could hurt. He told me that as part of his training he had to have the test done on himself. And he gave me time between probes to rest and breathe and recover from the pain. That made a huge difference.

It seems that it was known *over 20 years ago* that the EMG can be painful for some patients. Why is this information not known now??????

If you have the energy/time then I would write a letter to someone at the location where the EMG test was done.

The EMG test was pretty useless for me. It did show a few "weird" things (my layperson's wording, LOL!) but nothing definitive. So it was just ruling out anything obvious but did not provide any diagnosis.

By the way, I started out with light sensitivity (not as bad as your son's) but it went away over time.

Again, I'm so sorry that your son had to go through this test without anyone being supportive and understanding.

 

[ahimsa]

@shannah - I thought I would add one more thing. I'm not scared of needles. I used to give blood regularly, I've tried accupuncture (even needles on my face), and so on.

And I'm not hypersensitive to pain. For example, I have had small fillings done without any novacaine (didn't want the numbness). And after my endometriosis surgery I didn't even bother with the vicodin. The endometriosis hurt me a lot more than the surgical incisions which were just soreness.

So, neither fear of needles nor hypersensitivity to pain should have been a factor for me when I had the EMG done. And yet, for some of the probes, the pain was really awful.

I think it's interesting that the EMG hurt me so much when in other ways I don't have a huge problem with pain. Which may mean that for people who are sensitive to pain that this test is even worse for them.

Meanwhile, I found some links which mention pain (although it is downplayed a lot):

http://www.mayoclinic.org/tests-pro...erapy/basics/what-you-can-expect/prc-20014183

Sensations. The electrodes will at times transmit a tiny electrical current that you may feel as a twinge or spasm. The needle electrode may cause discomfort or pain that usually ends shortly after the needle is removed.
If you're concerned about discomfort or pain, you may want to talk to the neurologist about taking a short break during the exam.

http://www.hopkinsmedicine.org/heal.../neurological/electromyography_emg_92,P07656/

Five or more needle insertions may be necessary for the test. You may experience slight pain with the insertion of the electrode, but it is usually painless.
If the test is painful you must tell your examiner because this can interfere with the results.

 

[Snowdrop]

@shannah

I was not at all apprehensive at my first appointment. I'm not afraid of things in general but I have fibromyalgia and it is particularly bad in my right arm (the place the technician started with).
The reason my Dr is sending me is that I have had life long epilepsy (the clinic I'm going to is an epilepsy clinic). What convinced my Dr (the irony being I was just at the appointment to get a pain Rx refill) was he did a general check over since I was there and I was not well looking.

He takes me seriously that I'm ill he just doesn't know anything about ME so is not willing to pronounce on it. As a result he is looking for other explanations. He checked my reflexes and said he had never seen reflexes that fast. This and other info including the epilepsy is why I'm headed for the EMG.

All my life I've had a very strong startle reaction, if someone comes up to me quietly I startle. I have also become incredibly sensitive to so many things especially sound.

My husband is coming with me. I can barely make it to appointments and I can become confused if the appointment is long and I get tired. Unfortunately we don't have a car so will need to take public transport when the time comes. I think I will have to talk to the Dr before allowing him to start the test. But I think I will keep the appointment for now.

I hope your son improves.
best wishes,
SD

 

[ahimsa]

He checked my reflexes and said he had never seen reflexes that fast.

Snowdrop, I have had the exact same comments! My first neurologist was from the UK. After he tested my reflexes he said that I should be a football player! (i.e., the game that we silly Americans call "soccer" ⚽️ )

On a more serious note, he was aware that hyperreflexia can be a marker for problems but it's too general to be diagnostic of anything specific. So, more tests were done, including that EMG.

I don't think my reflexes are as fast now as they were back then. After all, I've aged 25 years. But every once in a while I surprise myself. I have knocked a bottle out of the spice cabinet and caught it instantly with my left hand (I'm right handed). I think that has to be reflexes because I couldn't do that on purpose if I tried (I'm uncoordinated, bad depth perception, etc.).

 

[Snowdrop]

lol. I have to say that is one good outcome of having Ninja reflexes ; all the crockery that I've saved from hitting the floor.

 

[alex3619]

I had EMG testing in the late 80s. I did recover fairly swiftly, but it was definitely very painful. I was at no time warned about this.

On the other hand I was a very mild patient at the time, not nearly as severe as now, and so might have reacted much less than many. This was however for extreme muscle pain I had been experiencing, and unexplained fatigue. This was about a year before I got a diagnosis of CFS if I recall correctly.

 

[Dufresne]

I did an EMG and didn't have any difficulty aside from the extreme discomfort of the test. And they always save the best for last because if they hit you with the humdinger right off the bat there's no way you'd stick around for the rest.

I have however had horrible reactions to other electrical treatments that have left me with fairly extreme neurological symptoms that persisted for a good month. My symptoms were very much in line with what you describe. I had a sort of excitotoxicity where my brain was severely jarred by abrupt stimulation. It was scary but I fully returned to baseline. Hopefully it's the same with your son.

 

[Valentijn]

@shannah - Tensing muscles excessively can induce a full-blown crash, even when not really moving in the process. I wouldn't be surprised if that is at least part of his current problem, in which case I would expect it to improve before much longer.

The other thing is that some of us do get adrenal-feeling crashes from time to time, where the reaction to mild stimuli is badly intensified. I don't what the actual mechanism is for that (if it's really adrenal at all), but my experience has also been that it goes away after a while. In my case it also seems to be associated with a period of intractable Orthostatic Intolerance - maybe a proper electrolyte mix would help?

Is it possible to get some blood drawn for basic tests? I'd be very curious to know if electrolytes, adrenal functioning, etc are normal.

 

[shannah]

Thanks for sharing your experiences everyone.

@Valentijn

He did have adrenal testing done years ago. I forget the exact results then but nothing was recommended. Apparently the provincial testing they use here isn't very accurate anyway. Seems like the case for so many tests here.

You've reminded me that I bought a new electrolyte supplement a while ago as he broke out in rashes from the stevia in the former one. I'll dig that out and see if it helps.

Thanks.

 

[pogoman]

Would appreciate any suggestions.

Thanks.

Did you discuss the pain issue with the neurologist that ordered the EMG on maybe having your son take pain medicines until the pain subsides?
There are meds like nortriptyline that work on neurological pain and are not addictive like opiates.

I had an EMG done at the end of 2013 and while unpleasant it was not that painful.
However later when the muscle biopsy in my leg was done due to the EMG results, the electric paddles they put on both sides of the site to neutralize the pain caused a painful burning sensation.
The surgeon had to use a local anesthetic instead.

fwiw I've had my patellar reflex tested recently by my neurologist and at my DOT physical and I have no knee jerk reaction

 

[shannah]

@pogoman

It's the heightened sensitivity that's the main problem that I'm trying to calm down right now.

Because he's so sensitive to everything, it's usually a good idea to keep medications and supplements down to a minimum for him.

Thanks for your thoughts.

 

[Snowdrop]

Hi @shannah

I'm just wondering how your son is doing with regards to his sensitivity after the EMG.
I hope that he is improving and that the effects are subsiding.

If you don't mind my asking, did any useful information come out of being tested?

I'm still a little leery of going for the test myself. I can't decide whether I should cancel.
best wishes
SD

 

[shannah]

Hi @Snowdrop

The hypersensitivity is improving slowly. He still strongly overreacts if there is an unexpected medium level noise but hopefully that will calm down as more time goes on.

We don't have the results as yet. We have an appointment in a couple of weeks. I can try to remember to let you know the outcome. Feel free to contact me if I don't remember to post here.

A number of years ago, when they were testing me for MS, they sent me for a number of tests, most of which I forget what they were. I do remember though that they offered me an EMG test. I asked them what would that tell. They said they were 85% sure I didn't have MS but couldn't totally rule it out because I had so many MS type symptoms.

This diagnosis or lack of diagnosis was based totally on the brain lesions (several of them) appearing in atypical spots for MS. The EMG would not do anything to influence that diagnosis one way or the other. Because it would not clarify anything, I already was really too ill to be travelling and the fact that we were relaying on the graces of a friend to transport us back and forth to Toronto so often already for other testing and treatments, etc., I ended up declining the test.

So perhaps it would help you decide if you could ask your doctor what would change as a result of the test. Perhaps you can weigh your decision based on whether or not beneficial treatment would result.

Blessings,
shannah

 

[Snowdrop]

@shannah
Thanks for that response.
If you don't remember to post in a few weeks the results (if they are at all useful to determining anything) I'll post you
provided I remember.
I am thinking of going to my GP before the test to talk about my concerns.
I'm glad that at least the symptoms due to the test on your son seem to be resolving.

 

[shannah]

Thanks @Snowdrop

That sounds like a wise decision to talk to your doctor beforehand.

One thing just came to me but you've probably already considered it. Would the EMG aggravate your epilepsy at all?

 

[Snowdrop]

I don't know, but it's a good question.