EM and Muscle Spasms

Hi there! New to this site. My 20-year-old daughter was recently diagnosed with EM. She has had the pain for months. It went from mild and irritating to feeling like she is on fire every night. We average about 6 ER visits a month due to the pain and also to muscle spasms. When her pain is severe, her body tends to “freeze” in place. Her muscles will contract and not let go. She has discovered muscles that she didn’t even know existed. It cinches her stomach in, closing it off, closing off her bladder, too. As the nerve pain travels from her hands to her arms, from her feet to her legs, the muscles will contract and freeze her in strange poses. It contracts her abdominal cavity, too, and works it’s way up her throat, clenching her throat shut and closing off her airways. She takes a lot of medication for other things, but she doesn’t have any, as of yet, to treat her EM. The cream that is being compounded is taking a while. I am trying to figure out if these severe muscle spasms are part of EM, or are we dealing with two things. Is one a response to the other?? Neuromyotonia or Isaac’s syndrome is looking like a likely candidate. Does anyone have both of these issues. Also, what helps the nerve pain? Not just the burning in the hands and feet, but the nerve pain to follow?? Thank you for your help!!

Hi, Also new to this site but it does sound like two seperate things. My daughter has Primary EM and suffers with a lot of pain but as for muscle spasms we have not noticed any. Primary EM is not caused by an underlying disease and can be inherited or idiopathic. Sorry to ask but could it be that your daughter has Secondary EM which would mean that her EM is caused by another condition? My daughter takes Gabapentin for nerve pain,might be worth asking your doctor about this and if not already investigated to find out if your daughter has Primary or Secondary EM. I hope this is of some use to you and I hope you and your daughter find the cause of the muscle spasms.

Hi Hotfeet,

Thanks for the reply! Yes, she is on gabapentin already. It helps, but not the spasms. Her hematologist suspicions an autoimmune disease. The three rheumatologists that we’ve seen already have been less than helpful, so still struggling to get that ironed out. I think she might have a separate issue. Looking into something called “Stiff Man’s Syndrome” or neuromyotonia. Think another name is Isaac’s syndrome. Explains all the stiffening up. Thanks for your help, and best wishes to your daughter. So hard to watch your child (not so little anymore :)) got through this.

Welcome to new member,
Your daughter is blessed to have a mom reaching out to a support group. I too have had a myriad of muscle problems. Since my beginning of daily flares Jan 2012 I’ve had varying muscle spasms, fatigue, soreness & swelling. The multitude of consulted docs couldn’t pinpoint the cause. I attribute it to my EM. What helped me w/these symptoms? Certainly muscles relaxers & opiates helped but I don’t want the brain fog. NSAID’s may have helped a bit. I have done a multitude of sessions with physical therapists, chiropractor, massage therapist, accupuncturist…etc all with some benefit.
After nearly 5 years I have developed a personal stretch & exercise routine. I do some yoga DVD’s. Currently I am doing Gyrotonic (Kinesphere) exercise classes. Best wishes to you & your daughter. Keep trying & find what works for her.
Elis CES

Hi Elis!

Thank you for the reply! Our chiropractor is one of our most treasured doctors out of a group of about 10 that we see! It helps a lot, it just doesn’t last as long as we would like. Unfortunately, my daughter has been forced into taking some strong meds, as she would end up in the ER if she didn’t. It’s such a catch 22. We are looking into an autoimmune disorder called Stiff Person Syndrome. She fits all the criteria, and is helped by diazepam, another identifying factor. It’s an extremely debilitating disorder, but her hematologist (our other angel!) is thinking about trying some IVIG infusions for her. Waiting for the labs to come back.

Back to the EM, though, my daughter is trying a compounded cream - baclofen, amitriptyline, and ketamin. Seems to be helping some. Also, her GI doc put her on Periactin for her gastroperisis. I have read that can either make noticeable improvement for EM, or noticeable worsening. Have you tried these? She’s mostly housebound and we are trying to lessen her symptoms to lessen her fatigue. Thank you for your words of wisdom!

Hy Firegirl,
In the first year of EM flares I had varying types skeletal muscle problems and of autonomic nervous system dysfunction. This included swallowing difficulty, regurgitation, decreased bladder control, hypotension, sleep apnea etc. The muscles problems were skeletal & smooth muscle. For GI motility I had some success with metoclopremide. Baclofen was the only muscle spasm med that I tolerated. Low dose Valium also helpful (cautions noted regarding routine use.) I do suggest wheat avoidance. A trial is a bit inconvenient but not harmful (exept to your wallet.) There is a variety of neurological & immune system symptoms related to gluten sensitivity. EM support group members report flares related to gluten. I tested negative twice. Out of desperation I finally changed my diet. Certainly my health improvement was multifactorial. It took 6+ weeks to notice large scale changes but I do attribute gluten avoidance as a key part of my improvement. Hope things are improving for your daughter. My 11 year old son is showing some mild symptoms. Love will help us prevail!
Elis CES

Is it possible she is having dystonic reactions due to her medication(s)?

I know this might not be it, but just in case this happens to apply, I wanted to tell you about it.

The spasms from dystonic reactions are HORRIBLE. And they can kill you when they happen in the larynx because they cut off the airway.

That happened to me, I am lucky I made it. I barely got to the right doctor at the right time.

It turns out I am sensitive to medications because I have a genetic problems in the genes that make the enzymes that break down medications. So they build up in my system and I get side effects a lot. My sister has had serious dystonic reactions also.

I have had a dystonic reactions to Gabapentin, by the way. And reglan/metoclopramide (almost killed me), and flomax.

Here’s the thing - if they are dystonic reactions, this is serious because the spasm can become permanent. In the larynx, the nerves for your voice can be damaged forever, etc. And elsewhwere in the body.

Even though it is not an allergic reaction, they gave me big shots of antihistamine because for some reason, that negates the dystonic reaction. This was in a different country. I was visiting Guatemala when I had my most serious reaction to Reglan.

They do not give the epipen type of medication, epinephrone/norepinephran, because that can make it worse.

It is essential that you find out if it is a dystonic reaction and then if it is, your doctor will change medications. They don’t seem to ever keep people on meds that cause dystonic reactions. The medications build up in some people and affect the brain and nervous system and that triggers the spasms and uncontrolled movements and pain.

So, talk to your doctors and assess if this is what is possibly happening.

If it is, I am sorry. They are very painful and can be frightening. Especially not knowing when they will strike. My sister and I are always very cautious about starting new medications. And we take benadryl (over the counter pills) at the first sign of trouble. If it is in the throat at all, In case it moves to the larynx. Usually it happens about 2 days into a new medication.

When I have a dystonic reaction, it starts slow, and then builds up. The spasms come and go like a slow wave, each wave building in intensity, the muscles contract and clench tighter than is even possible normally. And then they stay clenched for a while. When my sister had them in her jaw, it broke her back molars because her jaw closed so tightly and forcefully. It is so strange when your body does these crazy things on it’s own.

I hope you find your answers and she feels better soon, whatever the cause.

Thanks so much for your response! It has been a while since I posted this, but we have actually found out what is causing all of my daughter’s varied neurological problems, including the dystonia. She has complete cervical instability that goes clear down to about T5 in her spine. (She has Ehlers-Danlos Syndrome). Her cervical curve (her neck) is actually collapsing and causing what is called Cervical Medullary Syndrome. This includes her dystonia, EM, various spasms, etc. She is having a spinal fusion in a few weeks (occiput to T5) at Stanford. It has taken us so long to get some answers and we are finally, finally where we need to be. Thank you!