Adverse reaction to EMG
 

My pain clinic dr wanted me to have an EMG and QSART test to confirm suspected RSD in my wrist. Every dr I have says they think it's what's going on. Anyways, last Tuesday I went for the EMG. The pain was horrendous! One of the needles that they stuck into my should was excruciating. I cried and screams and the pain has never left. It's as if it set off a fire of pain in my shoulder. I have never had any shoulder pain. That night I creid and cried trying to find a way to calm the pain. Since then it's eased up some but is by far from normal and barely tolerable. Has anyone else had a problem with the EMG test? No one mentioned any "risks" of the test.....had I known this I would have never agreed to it.

When they did my EMG it was the same way. I had so much pain during and after it was ridiculous. I actually get a small stabbing pain in those areas still. not always but its there. I also wish the mentioned any risks... :( Good luck wish i had more advice. my doctors still dont believe me that i have that pain or that it hurt that bad either :(

The dr that did the test won't even call me back...his nurse did and said he said the test couldn't have triggered it.....I KNOW it did! I went from zero pain to beyond a ten in a flash!

You are absolutely correct. They are awful and painful. The next few days will probably not be any better. Sorry to say this to you. I am only telling you because it is what happened to me too. It does trigger a flair up. I cried too during and after.

I'm so angry! If they had told me there was even a chance of this happening I NEVER would have agreed to it. :(

OMG I so agree
 

ME TOO! ME TOO!
Will never do another.

It's been three weeks and I still have that awful burning fire in my shoulder... My pcp said I'm correct in thinking the test triggered it. I was going to get a glue shot but am now scared to get an injection for fear of the rsd.

It hurt me too! A needed test but not again!

Do you have any Lidocaine patches? It's good to have them on hand for spread to new areas. Lidocaine cream works as well and is less expensive. I'd suggest taking Epsom Salt baths every day and perhaps try Epsom Salt cream.

I don't really have any meds or anything to help with the pain. I did try to epsom salt bath..,.i wish I could live in there! Thank you for the recommendation!

I had a qsart test two days ago and told the tech the band was too tight but she wouldn't losen it...my wrist has been very swollen ever since and more painful. I am refusing any further testing.....I'm in enough pain and all their tests are doing is hurt me further

I was told the test would be uncomfortable. The test triggered a weeks long flare for me. I could barely drive home after it, and I had it done an hour away. I cried and literally screamed in pain while having it done and cried all the way home. Had I known I wouldn't have had it done. I never should have agreed to it, and I never should have believed them that it would be a little uncomfortable and gone alone to have it done. It also triggered spread of the diseased into my hip and lower back. I've learned that "a little pinch" and "mild discomfort" generally mean "you'll want to punch me in the face" and never to believe doctors about that sort of thing.

Oh my goodness...that's exactly how I reacted to the test and I have no clue how I drove home through my tears :(

Yes, it definitely can hurt. Some people are fine with it and others not so much. I also think it has to do with who is giving the test. I will not do it again because it did hurt.

My EMG/NCS's were also very painful but, in the end, I was glad that the tests performed confirmed the nerves that were damaged during surgery. With that information my doctors have been able to create the best possible treatment plan.

My best advice prior to this test and/or any type of injections is to find a way to relax yourself before hand and quickly afterwards. I used music, graded motor imagery and mindful breathing to help get control of pain afterwards.

I would be ok with it ifit hurt during the tests and a bit afterwards.....regardless of the pain level. However since the emg (going on 4 weeks) I have shoulder pain that I had never had that is thr same burning squeezing pain I feel in my wrist. And since the eeg I have swelling in my wrist that I hadn't had before.....it's the last effects that scare me.

Lidocaine patches are not narcotic. You should at least try them!

I think I've had 3 EMGs and nerve conduction tests since developing RSD The last few were because of WC docs. My treating physician advised strongly against but we worked out a plan so I could go ahead and not jeapordize my benefits.

I arranged to have a stellate ganglion block if I had too bad of a flare for the last one. The tech stopped it after a few minutes because she realized what it was doing--she wasn't a fan of torture... I immediately put a Lidocaine Patch on and used them for about a week. I made sure I was driven there because I 1)knew it wouldn't be safe to drive home, and 2)so I could take break through pain meds. It took me 4 or 5 days to get back to normal, which I count myself lucky for.

You will have accidents that cause flares if you have RSD long term. You'll be rear ended, or slip and fall, etc. You need to have a plan when those things happen to avoid spread. Everyone reacts differently to " life savers" and you'll need to experiment. See if a tens unit helps you, try massage, etc. BTW, make sleep a priority. Check out the "Life Savers" sticky for lots of ideas!

It's crazy for you not to have any meds. If I were newly diagnosed I would start with low dose naltrexone to see if it worked for me. http://painsandiego.com/tag/rsd/
Along with the aforementioned Lidocaine patches. Then I'd try some of the nerve meds and/or antidepressants. Then perhaps try Ketamine cream. And so on... This is not an illness you should try and white knuckle it through. Being stoic and refusing meds (or having an idiot doc that doesn't know what to prescribe you) is not giving your body any chance at relief--which you need!

As horrible as RSD is, the more you can contain it, the easier your life will be. Make a habit of researching all procedures and tests before consenting. We DO NOT respond all the same, and docs will swear up and down that such and such can't cause a reaction, when you'll find it does to some RSD patients And that's not to say you can avoid every potential flare, but you should know the risks and be prepared.

P.S. I'm pretty much pain free in warm ocean water, and warm pools aren't quite the same, but still offer some relief. If you have access to either, see how you respond.

I am post post surgical and newly diagnosed. I think the drs are still trying to devise a strategy. I go tomorrow to see what the plan is. I love warm water but live in frozen pa...short of living in a tub or moving I don't have much chance to be in warm water. It however is very very soothing,

One thing you can do is anytime your doctors suggest a test or medication - come here to this forum and do a search for what ever it is that they want to do or try. If you see lots of posts of people having bad reactions, then you can think about talking to your doctor about other options.

:grouphug:

Unless you went undiagnosed for a long time, then it's urgent that you start an aggressive treatment plan for the best chance at remission.

And for RSD/CRPS your docs must be experienced enough to know what to do during your first appointment. IT SHOULD BE TREATED AS URGENTLY AS IF YOU HAD CANCER, IMO.

I'm sorry, but I've just watched too many people over the years see that first year slip away, and they've subsequently regretted that they'll never know if missing that first year window could have changed their life.

And, if you get relief from the tub and that's you're only access, than make it a part of your routine every day. (But you also might want to check your local YMCA, Easter Seals pool, etc.)

Hannajane,

Please please listen to LIT LOVE. They are absolutely 100% correct. When I was newly diagnosed I was in a similar boat as you - I was post-surgical, went through a bunch of tests, couldn't walk, etc.

Everything I read and knew intuitively said to throw the kitchen sink at it, NOW. But I could not get any traction with the medical community for PT, OT, counseling, or any treatment modality whatsoever beyond nerve blocks and a revolving menu of drugs.

I'm fully recovered from RSD now. I took a big risk and went solo - no more doctors. I felt that was the only choice I had. I'm NOT saying it's the right one for everyone. It would have been much easier to have a doctor to support me but it wasn't in the cards.

Here is a complete list of things I did during my recovery process in the hopes that some of them may help you: http://neurotalk.psychcentral.com/thread205597.html

This has not been proven, but I believe that the primary cause of spread is excessive free radical damage. Poor bloodflow caused by inflammation results in further damage to the effected area, plus a diminished ability of the cells to remove free radicals generated during their normal metabolic process. The original area of damage then produces an excess of free radicals that are free to travel throughout the body and become trapped in small capillaries (typically in other limbs.)

If I were you, I'd look hard at DMSO and NAC. Both are potent free radical scavengers. The Dutch treatment concept is simple: eliminate free radicals at the source using DMSO. Free radicals that make it out of the injury site are eliminated by NAC. "DMSO for the site and NAC for the spread."

Here is a link to some supporting Dutch research on DMSO and NAC:

1) 2002 DMSO/NAC study http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf

Mirror therapy was another key to my recovery in getting range of motion back and retraining the guarding impulse. I did mirror therapy for 10 minutes on the hour at least 5x a day.

2) http://rheumatology.oxfordjournals.o....full.pdf+html

Obviously take my non-physician's advice with a grain of salt - but I'm only here to help, since I couldn't find anyone who'd actually recovered from this thing when I first got diagnosed. :)

But again - LIT LOVE is 100% right - taking action NOW is crucial.

Thank you all! I am trying my best to push for quick action but can only move at the specialists snails pace which is driving me bonker. Thank you for Shari g what you did that worked for you! It's ironic that you mention mirror therapy as I just brought that up at my dr apt on Monday and he acted as though I were off my rocker. to me it had sounded promising. I think perhaps I should find a different dr but time is not on my side and I know that.

I bet that most of us here have had multiple doctors look at us like we had two heads:D

I can really only speak from anecdotal evidence of course - but I can say 100% that mirror therapy worked demonstrably as a modality for me. And research studies show it has progressively less effectiveness based on the duration of any condition. Having read through all of your previous posts here I see that you are dealing with a recent surgical trauma from earlier this year, although you have a past history of recovery from RSD as an adolescent/teen.

Some of us are more prone than others based on a multitude of factors - but the first line of defense after any trauma - be it an accident, surgery, etc - I think should be boosting the body's immune system with antioxidants, and reintroducing GENTLE motion in the affected area within 48 hours of the initial trauma. The old "use it or lose it" adage applies. Mirror therapy helps override the RSD "guarding" instinct and lets us use it with progressively less pain over time.

For my affected leg I bought a full length mirror, sat on the couch, and did simple range of motion movements behind it while looking at the image of my "good" leg doing the same stuff. Left/right, up/down, and rotational movement. Made uppercase and lowercase ABCs.

It wouldn't be too difficult to put together a mirror box for your hand/arm.

The best thing about it for me (besides the noticeable improvement that came in about 2 weeks) was that I was taking my recovery into my own hands and not relying on the agonizingly slow medical system:)

Thank you so much for your input! I figure anything is worth a shot at this point. My surgery was back in dec. then another in June. I believe the RSD started after the first one though :(

Hannajane, I am so so sorry you've had to go through this. EMG is a CRPS patient's nightmare. The correct diagnostic tool, and the only one I've ever heard of is a Triple Phase Bone scan. It's done by taking Xrays before and after a radioactive dye is injected into your veins. Bones affected by CRPS absorb the isotope differently than "normal" bone. Thing is the test is only about 55% effective, meaning a negative or inconclusive result doesn't mean the person doesn't have CRPS, but generally a positive result does indicate CRPS.

Don't fear the flu shot, My CRPS is full body now but with the right side not as bad as the left. I set limits for touching, making sure any Drs., Nurses, or Techs know that a bad touch could mean a scream. I don't worry about not seeming macho by saying this, some "Macho" guys would be whimpering shivering lumps if they had to endure my pain level on a "good" day.
Has your primary care talked of a referral to a Pain Clinic yet? Treatment speed can be key to contain and get a possible remission.
Also if your Dr. hasn't put you on pain meds yet try Aleve or Extra Strength Tylenol they're not much but with CRPS pain feeds pain and can only make things worse.
If you have Allodynia (feel pain from light touches or even a breeze) keep that area uncovered as much as you can or wear soft fabrics that won't aggravate your pain.
The baths are lifesavers but in a pinch almost any warm water can help, at times I'll just let warm to hot water from the tap run over my hands and even take my wet hand and use it to bring the wetness and heat to my upper arm.
We do what we need to do to get by... best of luck and soft thoughts always..

I am finally making some progress with a pain clinic....they scheduled three stelae ganglion blocks but not til mid November! If the drs were in this pain they would learn not to move slower than snails!

I can NOT stand the wind or most clothing which is becoming an issue as we head right into winter! I didn't know there was a name for it. I've been wearing tanks with a very light sweater that I have two of and can tolerate but as soon as I can I get the sweater off.....problem being is I am also extremely sensitive to the cold so my heating bill will be awesome lol

I notice to I seem to be sensitive to weather changes in general as I am often worse those days. Not sure why.

I honestly feel crazy....I'm always saying, this hurts, that hurts, don't touch me, whah whah whah.......I want my life back!

Last night around 3am my arm was really hurting so I filled a bucket with hot water and Epsom salts and sat there with my arm in the bucket as I watched a movie just to try to shift my focus. Lol

I'm glad they were able to get the blocks scheduled...sucks that you have to wait but that's usually fairly typical in my experience.

I would strongly recommend desensitization therapy for the hypersensitivity. I am extremely sensitive to touch, cold, etc...and this helped me a lot. Don't get me wrong...it was hellish to go through...but I can now wear normal clothes (though I'm still sensitive and pretty picky about fabrics) and more importantly I can handle wearing things that prevent the worst triggers like gloves, scarves (which I hate but protect my neck which is extremely sensitive to air movements), and Omni-heat undershirts in the winter (these help me a lot so I don't get too cold). The desensitization therapy made that possible because I was SO sensitive to touch that I couldn't wear anything for a while except EXTREMELY loose t-shirts (like 3-4 sizes bigger than what I normally wear). Hard to function and live a normal life when you can't even wear normal clothes...something about normal clothes that help my mental health too and make me just feel better.

Did the bucket of warm water help? I hope so. Other things to maybe consider trying would be a heated blanket/throw (stores should be carrying those again now), heating pad, and even those heating patches like therma-care (I normally buy the generic ones and buy the "neck" ones because they are easier to wrap around my arm, ankle, etc)...and I love my space heater because it helps me a lot without having to have anything actually touching me (though my boyfriend now wears shorts year round in the house if we're in the same room together...lol).

Hope you start to see some improvement soon. Keep trying different things and try to keep track of what helps, what hurts, etc...no matter how small. Having an arsenal of tricks up your sleeve to help with the pain...no matter how small...is something that helps me so much. I use various combinations to get through the day and deal with pain flare ups.

Good luck and I hope the blocks give you some additional relief!

I'm kind of pushing to move to a nudist colony on a tropical beach....just kidding.

The clothing is making it hard to be socially acceptable this time of year here. My dr says the only way to get over it is to expose myself to what hurts....ehich I believe is the therapy you are speaking of. My pt has my playing with sand and rice. However, only from my elbow down and I have problems in my shoulder too.

I don't think I could tolerate a patch even if it was heated. I'd thought about an electric throw....maybe I'll order one or maybe try the little heater idea. Thanks!

I've done well enough with clothing that I am now comfortable wearing some clothes. I can wear soft clothing that isn't constricting without issue. What I can't stand (and doubt I'll ever be able to) is a bra or shoes. A bra is sheer torture, it's like having someone wrap a wire across my shoulder and hang off it. It doesn't help that I'm well endowed, so I can't really leave the house without one. I know surgery is bad, but I'm actually considering surgery to simply chop them off and get fakes so they're perma-perky so I can skip the bra and not look like a freak and be comfy out of the house. Won't help with shoes, but it'll help enough that it could make it possible for me to look for part time work.

Anywho... what has really helped with clothes has been to shop for the softest possible clothes I can get my hands on. I am one of those "always" cold people so I'm always either dressed or wrapped in a fluffy blankie at home. It made a huge difference (after a few years) that now keeps me from suffering when I wear my preferred clothes. I can even wear soft jeans now with only mild discomfort.

So if you start with the least uncomfortable or least painful, you may find that with time you'll eventually be able to tolerate things you never thought you'd be able to. Just know that it may be faster for some than others and be patient.

Bras were one of the hardest for me too...I had to use a lot of Lidoderm patches under the straps and stuff where it was the worst for a long time (I would cut the patches up and use the smaller pieces where I needed them vs one large patch). But eventually I was able to work up to a tolerance for the bras...at least for a limited amount of time...there are still times where it's a complete no-go though...lol!

For me...desensitization focused a lot more of different textures...especially different kinds of fabrics. We also used feathers, rice, etc...but I found the fabrics were the important thing to get me back in clothing. We played around with different amounts of pressure. It really was a painful therapy but totally worth it for me.

Shoes...oh how I miss my gym shoes...but I've managed to find stuff that works for me. I mostly wear ballet flat style shoes these days (with nice athletic shoe type soles on them). They're easy to get into and out of and don't touch the parts of my foot/ankle where the pain is the worst. Very important to get ones that are soft though and that will stretch as needed. I got some new shoes just a few months ago because my old ones were just run into the ground and with also being pregnant I needed shoes that didn't hurt my feet. I'd been eyeing these shoes on amazon.com for a couple of years but I hate spending a lot of money on a pair of shoes...but decided to bite the bullet and just get them. They're the Maha Breathe flats by Patagonia...they are WONDERFUL. Right out of the box I was able to wear them and they were so comfy...with breathable mesh all around the sides and they definitely stretch out with my swelling feet...and they are SUPER light. I seriously thought the box was empty when I got it in the mail...that's how light they are.

They don't work out well if it's cold or raining though...so for those times I actually have some knitted Ugg boots. Another splurge on shoes I didn't want to make (especially since I think they are hideous)...but honestly it was a great purchase for me last year. They are toasty warm and comfy. Only issue I have with them is if my ankles swell then it's hard to wear them because of where the ankle seam is on the boots...but it's not usually a problem. There's plenty of room in there for swollen feet...but the ankles are a tight fit...just depends.

But boy...I do miss my gym shoes. I'm a total jeans and t-shirt with gym shoes girl...but I gave away something like 40 pairs of gym shoes a couple years ago when I came to terms with the fact that I just couldn't wear them anymore. I still try some on every once in a while to see if I can find a pair that doesn't hit me in the wrong place and have only found one style of the years...and the company that made them close so I can't get anymore. :(

My favorite two pairs of shoes are my ballet flats, in gold so they match everything and look adorable and class it up, also with rubber soles, and my flip flops. I actually paid $25 for the flip flops and that was their sale price. They are rather fancy with gel padding, thick soles and thick, soft, durable straps. I've been shopping for years for a pair of winter shoes but can't find a pair. My left foot, ankle and leg swell so it's really awkward trying to find shoes that fit both feet, especially when I want something that will keep snow from falling in. I do own one pair of sneakers. I don't wear them particularly often because shoes hurt, but sometimes I need something sturdy enough to support my feet more than the other shoes and to protect me more and so I have these. They do lace really loosely and can tie without much pain on my left foot so it isn't so bad. They are the single pair of sneakers I've tried on in 5 years that I've felt comfortable enough in to buy. My husband balked at the $70 tag but they were a well respected brand and I knew they would last many years so I told him to suck it up. I still lament all my shoes. I owned dozens of pairs of high heels. (not exaggerating at all either) I owned more shoes than clothes I think.

I didn't think of this til now, but I should consider going back to corsets. I used to wear them all the time. It probably sounds stupid to someone who has never worn one, or never worn a properly fitted one. But a corset, when properly fitted, isn't painful or restrictive at all. As a matter of fact, it is the single most comfortable piece of clothing I've ever owned. I think it could be an option if I go with strapless ones. Of course, they are extremely expensive also.