I have ME/CFS with strange symptoms of discomfort and jerking. Does anyone else experience the same?

[hinata]

Hi all. I’m 23M and this is a quick TLDR of my ME/CFS.

2016-2021 - mild CFS. exercised regularly but could never improve beyond a certain point. I developed a localised chronic headache on my right prefrontal area that never goes away.

2021-2023 - started to experience discomfort in my body which i could roughly feel. Began to have issues with sitting down, just felt uncomfortable and no logical reason why. (mild-moderate CFS). I picked up a habit of having to breathe in deeply/hyperventilate, at first it happened to me and after that i learned to do it to try and cope with my discomfort.

Sept 2023 - started to experience jerking in my body. it slowly became worse as i did not change my lifestyle much and it seems to be related to the discomfort. It didn't seem to affect my quality of life much as most of the time i was also affected by the discomfort.

I just had a crash last week and it seems to have lowered my baseline. My discomfort is way worse now and i can now pinpoint its location. The discomfort is localised in the area near the bottom of my left lung, and it has also become more serious. My jerking occurs a lot and it affects my sleep as i keep jerking in bed and i cannot fall asleep due to that. It seems like my back will jerk a lot and my body will have tremors (my body will jump/jerk forward).

Does anyone have any similar symptoms as me? I searched around and i haven't really seen anyone who experienced these symptoms. My discomfort and jerking seem to be related and i am just pacing and evaluating my options at the moment.
I haven't gotten diagnosed for ME/CFS yet and it would also help for any suggestions on how to get diagnosed as so far, like which department to get an appointment from as here i am (singapore) it is hard to get diagnosed with me/cfs.

 

[Zebra]

My discomfort and jerking seem to be related and i am just pacing and evaluating my options at the moment.
I haven't gotten diagnosed for ME/CFS

Hi! I'd like to offer a thought that you can feel free to discard if it doesn't feel right to you.

Involuntary muscle movements, jerks, twitches, spasms could be caused by something besides ME/CFS.

It might be worthwhile to visit a neurologist or neuromuscular specialist to investigate these symptoms, before seeking an official ME/CFS diagnosis.

Once you get diagnosed with ME/CFS, it's likely your symptoms will be dismissed by all future specialists, so I'm just encouraging you to dig a little deeper on the involuntary muscle movements (and localized headache) before attributing these symptoms to ME/CFS.

Have you been evaluated for any types of encephalitis (viral or autoimmune)?

Again, if you've already exhausted this route, or this doesn't resonate with you, please ignore.

I'm just sharing my thoughts based on the information you provided in your post.

Best of luck to you!

 

[maddietod]

You could look into restless leg syndrome. I had it, and sometimes it involved whole body jerking, only at night. I take 400mg magnesium glycinate before bed. When my legs jerk even with the magnesium, I use magnesium "oil" as well. I prefer the lotion form.

You could also try working on trigger points to see if the headache has a relatively easy fix. I don't get headaches, but I regularly work on points in my neck for neck or shoulder pain.

 

[hinata]

You could look into restless leg syndrome. I had it, and sometimes it involved whole body jerking, only at night. I take 400mg magnesium glycinate before bed. When my legs jerk even with the magnesium, I use magnesium "oil" as well. I prefer the lotion form.

You could also try working on trigger points to see if the headache has a relatively easy fix. I don't get headaches, but I regularly work on points in my neck for neck or shoulder pain.

hmm mine does involve my upper body jerking a lot and not my legs, and i did go through the specialist route for the jerking and they prescribed me with clonazepam which helped calm the jerking a little but did not seem to help with the root cause of the jerking. In fact it might have made me overestimate my limits weeks prior to my major crash. I don’t think it is restless leg syndrome, but i could rule it out. Thank you.

 

[hinata]

Hi! I'd like to offer a thought that you can feel free to discard if it doesn't feel right to you.

Involuntary muscle movements, jerks, twitches, spasms could be caused by something besides ME/CFS.

It might be worthwhile to visit a neurologist or neuromuscular specialist to investigate these symptoms, before seeking an official ME/CFS diagnosis.

Once you get diagnosed with ME/CFS, it's likely your symptoms will be dismissed by all future specialists, so I'm just encouraging you to dig a little deeper on the involuntary muscle movements (and localized headache) before attributing these symptoms to ME/CFS.

Have you been evaluated for any types of encephalitis (viral or autoimmune)?

Again, if you've already exhausted this route, or this doesn't resonate with you, please ignore.

I'm just sharing my thoughts based on the information you provided in your post.

Best of luck to you!

regarding the headache, i spent years trying to find the reason but didn’t have any luck with it after i did my MRI and it was okay and medications did not work at all. I am still in the process of seeing the movement disorder clinic but i haven’t talked to the doctors there about me/cfs. Thank you for the suggestions. I am not sure whether my tests in the hospital covered what you mentioned and i would check that with my doctor.

 

[maddietod]

FWIW this is the first thing that came up when I searched 'magnesium deficiency.' https://health.clevelandclinic.org/...sium-deficiency-and-if-so-what-to-do-about-it

It's a cheap experiment. Doctors tried to treat me with gabapentin, which helped the jerking, but (like all meds) made other things worse.

 

[cfs since 1998]

Three times now I developed mild twitching (fasciculations) and jerking (myoclonus) while taking antivirals, which is reduced but not eliminated when I stop taking them. I've heard of other patients experiencing the same.

I also had a grandparent that developed mycoclonus, but we never figured out why. I suspect it was a combination of medications, mold exposure, T2 diabetes, and maybe subclinical autoimmunity or inflammation affecting the CNS.

 

[bad1080]

Have you been evaluated for any types of encephalitis (viral or autoimmune)?

myalgic encephalomyelitis is quite literally that, an inflamed brain. not saying there can't be other reasons for the jerking (and it could be worthwhile ruling those out) but it can be caused by me-cfs, it just depends what area of the brain is affected.

 

[serafim]

are you on any antipsychotics or other meds that affect dopamine?

 

[Zebra]

myalgic encephalomyelitis is quite literally that, an inflamed brain. not saying there can't be other reasons for the jerking (and it could be worthwhile ruling those out) but it can be caused by me-cfs, it just depends what area of the brain is affected.

Yes, I am aware of that.

As I stated in my post, I am suggesting that the OP rule out treatable forms of encephalitis before settling on an ME/CFS diagnosis.

In the States, ME/CFS is supposed to be a diagnosis of exclusion.

 

[hapl808]

I get these all the time. Thought I already answered in this thread. Visible and annoying when I'm in a crash, but they're mild or gone when I'm not crashed. I'm always bedbound or housebound, though, and can't stand without assistance.

Longer crashes (weeks or months) exhibited this, with the myoclonic jerks dissipating over time usually.

 

[Maria_]

Have you ever checked your B vitamins? A Lack of B12 or B1 can cause similar symptoms. I would check Holotranscobalamin as B12. What about B9, B6? Maybe it would be good to check all vitamins and minerals too. (What about Copper?)

 

[hinata]

I get these all the time. Thought I already answered in this thread. Visible and annoying when I'm in a crash, but they're mild or gone when I'm not crashed. I'm always bedbound or housebound, though, and can't stand without assistance.

Longer crashes (weeks or months) exhibited this, with the myoclonic jerks dissipating over time usually.

thanks for this. my jerking recently became worse and i might have missed taking enough care of it previously because i tend to jerk less when i’m sitting/upright, but i have spent the past few days mostly laying and still jerking for the entire day. Maybe this is part of PEM but i would continue to monitor it, or it might be unrelated to cfs

 

[hinata]

it was getting worse while my baseline stayed the same so i didn’t really think too much about it as usually after i end my day i jerk all i want in bed and fall asleep but now that i spend alot of time in bed i see that it’s happening the whole day now(as compared to before where i sat down more and jerked mostly when i’m supine)