Is dystonia common with CFS/ME people?

[November Girl]

I just went to the ER for not-a-stroke (good thing) and severe dystonia. Of all things they gave me benadryl to stop the horrible jerks. I've dealt with these jerks off and on over the years, but never knew what they were. Dystonia is a neurological movement disorder. This was the first time I've had it in the trunk muscles as well as arms & legs. Anyone else deal with this?

 

[Paw]

Yeah, I deal with this too -- although not as severely as you. I'm constantly working to relax my posture (whether standing, lying down, or seated) after discovering it has become distorted by neurological impulses. Cramps, jerks, zaps, RLS -- all seem related.

The key question I have is whether my neurologist is correct in thinking all my issues (including FM and ME) stem from my neuropathies (autonomic, peripheral, and small-fiber).

Glad you didn't have a stroke! I paid for a brain MRI myself once just to be sure I hadn't had strokes.

 

[taniaaust1]

i was diagnosed with rhythmic myoclonus when a dr sent me to hospital jerking and my body getting muscle contractions due to the ME (many people of the forums though think I have lyme). I agree the jerks, zaps and RLS all seemed related. I rarely now days get these kinds of issues.

My jerks were so bad that I'd get vocalization them. One time I was watching tv and got such a big jerk that it threw me from sitting on the lounge, to face first onto the floor.

I also had a bad side jerk which happened with my head (hard enough that I always wondered if I was going to get whiplash due to it. it would start jerking so that my head would be thrown to one side (sideways) quickly over and over).

I seem to be recovered from all those neuro symptoms now and just now have other kinds of symptoms with the ME.

 

[Cort]

I just went to the ER for not-a-stroke (good thing) and severe dystonia. Of all things they gave me benadryl to stop the horrible jerks. I've dealt with these jerks off and on over the years, but never knew what they were. Dystonia is a neurological movement disorder. This was the first time I've had it in the trunk muscles as well as arms & legs. Anyone else deal with this?

Dan Moricoli had really bad myoclonic jerks which I suppose is similar to dystonia. His arms and legs would go flying. Exercise, interestingly, would bring them on. His neurologist thought it was in part due to his inactivity; his brain got confused in how to deal with his muscles. As he improved they slowly got better and eventually disappeared altogether.

 

[Cort]

Yeah, I deal with this too -- although not as severely as you. I'm constantly working to relax my posture (whether standing, lying down, or seated) after discovering it has become distorted by neurological impulses. Cramps, jerks, zaps, RLS -- all seem related.

The key question I have is whether my neurologist is correct in thinking all my issues (including FM and ME) stem from my neuropathies (autonomic, peripheral, and small-fiber).

Glad you didn't have a stroke! I paid for a brain MRI myself once just to be sure I hadn't had strokes.

Wow...you have documented autonomic, peripheral and small fiber neuropathies. Is that all due to damage to nerve fibers (both autonomic and sensory) in the skin?

Did he recommend anything for them (IVIG?) or have any idea why they arose?

 

[November Girl]

Dan Moricoli had really bad myoclonic jerks which I suppose is similar to dystonia. His arms and legs would go flying. Exercise, interestingly, would bring them on. His neurologist thought it was in part due to his inactivity; his brain got confused in how to deal with his muscles. As he improved they slowly got better and eventually disappeared altogether.

Cort, I always thought my problem was myoclonic jerks. The severity has come and gone over the years. There is a difference, though I'm not clear on what it is. Interestingly Benadryl has a rare side effect of triggering myclonus, but is used to stop dystonic jerks.

Thankfully I am seeing a new neurologist in 2 weeks. I hope to get some answers, and maybe the holy grail - a neurologist who knows something of ME/CFS. Actually she is an NP, but newly qualified, so perhaps more knowledgeable. I was referred to the doctor she practices with, and my regular NP and MD are very impressed with the neuro doc; so I assume that anyone he hired will be good as well.

 

[Also November Girl]

I have dystonia, currently not treated, but am on anti-histamines for MCAS. I found your post fascinating and wondering how the two issues could be related.

 

[November Girl]

I have dystonia, currently not treated, but am on anti-histamines for MCAS. I found your post fascinating and wondering how the two issues could be related.

Besides its antihistamine function, Benadryl is also an anticholinergic.
From Wikipedia "An anticholinergic agent is a substance that blocks the neurotransmitter acetylcholine in the central and the peripheral nervous system. Anticholinergics inhibit parasympathetic nerve impulses by selectively blocking the binding of the neurotransmitter acetylcholine to its receptor in nerve cells.
I think this aspect of Benadryl is what makes it useful for dystonia.

There is a cluster of overlapping diseases that includes things like ME/CFS, Fibro, MCAS, POTS and others. This includes any autonomic dysfunctions like dystonia.

 

[Also November Girl]

Besides its antihistamine function, Benadryl is also an anticholinergic.
From Wikipedia "An anticholinergic agent is a substance that blocks the neurotransmitter acetylcholine in the central and the peripheral nervous system. Anticholinergics inhibit parasympathetic nerve impulses by selectively blocking the binding of the neurotransmitter acetylcholine to its receptor in nerve cells.
I think this aspect of Benadryl is what makes it useful for dystonia.

There is a cluster of overlapping diseases that includes things like ME/CFS, Fibro, MCAS, POTS and others. This includes any autonomic dysfunctions like dystonia.

I didnt know that dystonia was an autonomic dysfunction issue. Boy, it sure would be nice to have a doctor who could see the big picture and treat accordingly. I just got fired by my neurologist for asking if the combination of drugs he had suggested might work against antihistamines to cause heart rate problems. A simple yes or no would have been nice.The firing is a little more complicated than that, I truly don't know the real reason, he won't communicate. Typically it's because my problems are too complex and they head for the hills.

 

[November Girl]

I realized a lot from watching this video by Lucinda Bateman. Basically, our current medical system is not set up for complex multi-system disease like ME?CFS and many others. I learned a lot here about how to bring my doctor up to speed and work with her. IT was well worth the time - I'll be watching the rest of them. https://batemanhornecenter.org/patient-education-video-library/

 

[Also November Girl]

That's really sweet of you to share this information, November Girl. I'll check it out.

 

[Not dead yet!]

Besides its antihistamine function, Benadryl is also an anticholinergic.
From Wikipedia "An anticholinergic agent is a substance that blocks the neurotransmitter acetylcholine in the central and the peripheral nervous system. Anticholinergics inhibit parasympathetic nerve impulses by selectively blocking the binding of the neurotransmitter acetylcholine to its receptor in nerve cells.
I think this aspect of Benadryl is what makes it useful for dystonia.

There is a cluster of overlapping diseases that includes things like ME/CFS, Fibro, MCAS, POTS and others. This includes any autonomic dysfunctions like dystonia.

I am looking through previous posts about antihistamine. I noticed this conversation didn't include MS, which I think is odd since dystonia is about uncontrolled movement. I know MS diagnosis isn't simple, but I think if a person is having uncontrolled movements they should talk to a neurologist about imaging to look for MS.