Is twitching a symptom of fibro newly diagnosed

[funkytown]

djhsix-did your doctors explain why you are having myoclonus? I cannot find articles describing the connection between myoclonus and fibromyalgia, especially spinal generated myoclonus.

Hi! I'm newly diagnosed with either fibromyalgia or central sensitization disorder. I am a 66-year-old retired neonatal pediatric advanced practice nurse who broke her left ankle in three places to celebrate retirement in February 2021. Numerous diagnoses have been given to me from spinal cord contusion to osteoarthritis to cervical/lumbar myelopathy to multiple sclerosis to amyotrophic lateral sclerosis to now this. All my old aches and pains which I previously ignored and lived with are now under this big umbrella. Since the night of my accident, my most consistent symptoms have been myoclonus, primarily limbs, digits, shoulders, and trunk with a few episodes in the neck, eyelids, and lips. (It's textbook myoclonus, observed by my local neurologist while his EEG technician was running the EEG.)

The ultimate quaternary care providers who emphasized their expertise at providing difficult diagnoses and the need to reduce stress/medications have told me to stick with my current regimen until they can fit me into their comprehensive treatment program sometime at the beginning of 2022. Oh, and they will explain everything and provide therapists/specialists to help with every issue that might be troubling me and, of course, they cannot refer me to anyone outside of their system. Additionally, I may have complex regional pain syndrome with my ankle fracture, and waiting is dangerous (per their literature).

 

[JayCS]

GABA has decreased my focal seizures and the unrest in my legs at night, whilst levodopa, actually for RLS, made the latter worse, at least the 2 times I've taken it - might that or other amino acids be something worth considering?

 

[djhsix]

GABA has decreased my focal seizures and the unrest in my legs at night, whilst levodopa, actually for RLS, made the latter worse, at least the 2 times I've taken it - might that or other amino acids be something worth considering?

I ordered GABA and Glycine supplements. Glycine is supposed to help the GABA cross the blood brain barrier. Fingers crossed.

 

[djhsix]

I haven't taken the time to video my twitches/jerks yet, but I talked to my doctor and have an MRI scheduled for 04/02. I've increased my iron to deal with RLS and magnesium for deeper sleep. I was hoping to see some improvement with the twitches/jerks, but none so far.

Update. My RLS has pretty much disappeared and the myoclonus has decreased a bit too, so the supplements must be working. My ferritin levels didn't increase as much as the doctor had hoped, so I increased the iron and will get that checked again in September.

 

[djhsix]

djhsix-did your doctors explain why you are having myoclonus? I cannot find articles describing the connection between myoclonus and fibromyalgia, especially spinal generated myoclonus.

Nothing definitive on the myoclonus. The EEG ruled out seizures, and the MRI ruled out MS and probably a few other things too. The neurologist said it could be anxiety.

 

[funkytown]

Glad to hear your symptoms have decreased! I’m trying my own selection of supplements as I have not received any follow up or definitive diagnosis on FM yet.

 

[JayCS]

Glycine is supposed to help the GABA cross the blood brain barrier.

Thanks very much for the reminder! GABA worked for me without, but maybe the magnesium bisglycinate I have added is changing its uptake. Something I hadn't considered yet in trying to optimize the doses to recreate my initial successes with only 2-4 sleep breaks - everything else is still brilliant.
You have read my posts about best increasing from 125mg sublingually, but using capsules if you have stomach hyperacidity?

 

[djhsix]

Thanks very much for the reminder! GABA worked for me without, but maybe the magnesium bisglycinate I have added is changing its uptake. Something I hadn't considered yet in trying to optimize the doses to recreate my initial successes with only 2-4 sleep breaks - everything else is still brilliant.
You have read my posts about best increasing from 125mg sublingually, but using capsules if you have stomach hyperacidity?

How long did it take for the GABA to kick in?

 

[JayCS]

GABA (and the other amino acids I'm trying too) kicks/kicked in on the same day/in the same night, the first time you take/I took it. BTW without any extra help from anything like glycine. When I told my sleep lab psychiatrist how effective & quick it is and asked if it maybe works more via the gut microbiome, he said no way, if it having effect on my sleep as well as stiffness it is going thru the BBB with no problem. Like recent research he (then) doubts that it can't get thru it (they just don't understand how yet, as the molecule is normally too big).

I started with 750mg, which is roughly the right amount for me I've found, after decreasing to about half and increasing to 1800mg, which was way too much. If I'd only needed 125-300mg then the 750mg would have been too much right away. If I'd started with 125 I probably wdnt have noticed as much difference. Taking it sublingually means it is taken up over the mouth, so works inside of minutes or hours. With my hyperacid stomach I take it in capsules, so that takes 1-2h. As I put the exact amount of powder I'm trying in empty capsules myself now, I might lick the specks of powder off of my fingers and that then works quickly too.
That's why Trudy Scott recommends to increase the dose every night (if you're also taking it for sleep, like me) until it works well enough, and go down again if it's too much, so you can get there inside of 2 (or 3) weeks. I've been jumping around 300mg at a time in the dose above 1000mg.

Getting back to the thread topic of twitching/myoclonus: Have you read the recent thread "Functional Neurological Disorder (FND) and fibromyalgia" yet? I've put "you" in there.

After your hint I've decided to stop taking the magnesium glycinate, as it may be 'helping' the GABA too much, and I've been (over-)increasing the GABA-dose anyway, need to get down, as my blood pressure & pulse seem to have gone up, which would be 2 of the symptoms of serotonin syndrome.
After analyzing sleep & supps in my blog for hours today I've also decided to stop glutamine, as it looks more as if it has been harming than helping.

 

[James Vanetten]

I have fibromyalgia and I have muscle twitching in my left leg alot when I'm relaxing, and I also have twitching in my arms and my eye lids.

 

[Auriel]

I’ve had some twitching in my left eye for the last 3 days (which has been annoying!) but in the past I’ve had twitching in the left side of my face and by my mouth (especially when migraines started) sometimes my fingers have started up as well (which was a bit scary cos I thought I was developing Parkinson’s!)and some leg muscle spasms but just after swimming or walking.

 

[Jemima]

I get twitching sometimes too, in my eyes and occasionally random places around my body, usually when I'm rundown and tired. I take it as a signal that my body's asking me for help!

 

[sunkacola]

I get twitching sometimes too, in my eyes and occasionally random places around my body, usually when I'm rundown and tired. I take it as a signal that my body's asking me for help!

Same here. And I try to "ask" my body what it needs and then provide that for myself.

 

[Edit]

I haven't taken the time to video my twitches/jerks yet, but I talked to my doctor and have an MRI scheduled for 04/02. I've increased my iron to deal with RLS and magnesium for deeper sleep. I was hoping to see some improvement with the twitches/jerks, but none so far.

My restless leg symptoms are coming at night and made me very upset, because I can not sleep. I take the medication, get up, going around and go back to bad. sometimes I can not go to sleep all night. nothing helps and I am so depressed. Your limb is twitch when you are in bed or just any time when you relaxing?

 

[Edit]

GABA (and the other amino acids I'm trying too) kicks/kicked in on the same day/in the same night, the first time you take/I took it. BTW without any extra help from anything like glycine. When I told my sleep lab psychiatrist how effective & quick it is and asked if it maybe works more via the gut microbiome, he said no way, if it having effect on my sleep as well as stiffness it is going thru the BBB with no problem. Like recent research he (then) doubts that it can't get thru it (they just don't understand how yet, as the molecule is normally too big).

I started with 750mg, which is roughly the right amount for me I've found, after decreasing to about half and increasing to 1800mg, which was way too much. If I'd only needed 125-300mg then the 750mg would have been too much right away. If I'd started with 125 I probably wdnt have noticed as much difference. Taking it sublingually means it is taken up over the mouth, so works inside of minutes or hours. With my hyperacid stomach I take it in capsules, so that takes 1-2h. As I put the exact amount of powder I'm trying in empty capsules myself now, I might lick the specks of powder off of my fingers and that then works quickly too.
That's why Trudy Scott recommends to increase the dose every night (if you're also taking it for sleep, like me) until it works well enough, and go down again if it's too much, so you can get there inside of 2 (or 3) weeks. I've been jumping around 300mg at a time in the dose above 1000mg.

Getting back to the thread topic of twitching/myoclonus: Have you read the recent thread "Functional Neurological Disorder (FND) and fibromyalgia" yet? I've put "you" in there.

After your hint I've decided to stop taking the magnesium glycinate, as it may be 'helping' the GABA too much, and I've been (over-)increasing the GABA-dose anyway, need to get down, as my blood pressure & pulse seem to have gone up, which would be 2 of the symptoms of serotonin syndrome.
After analyzing sleep & supps in my blog for hours today I've also decided to stop glutamine, as it looks more as if it has been harming than helping.

can you tell me what is GABA? this is a name of any medication or this is I can buy over the counter? It is medication or some herbal stuff? Sorry for my question, I never heard that , and if it is good I have to buy here in Australia or ordering ebay if I can have it. thanks for the help