Muscle Twitching

[JayCS]

because I had so much happen in the past 6 months he told me it was all in my head and how stress can cause all of this.

Hi and welcome from me, too!
Well stress can account for quite a bit.. but not everything.... "All in your head" can mean two very different things. Some docs may confuse the hypothesis that fibro is "our brain and spine (CNS) overreacting" (central sensitisation syndrome) and not an actual injury (body or nerve)) with: saying it is "imagined" pain. Or they aren't explaining it well. Or we aren't understanding it well cos they are using too hard words.
Modern good pain docs know that pain is real and not imagined and that we need to be believed. And hopefully it'll get round to all of them before they get that pain themselves. - ah, no, we wouldn't wish that upon them.

But what I'm unsure of, Nicole, is that you've been talking about ALS and not fibro and you haven't said whether you've got the diagnosis, are looking for it, suspect fibro, if some of your docs are suspecting it, others not etc....

 

[cookiebaker]

hi @nicolecozzi

first, just take a deep breath, and let it out slowly... dont be scared. being scared just causes more problems. Take things one day at a time, one minute at a time, even one second at a time if that is what you need to do.

If you are not happy with, or not comfortable with the doctor you have been going to, then by all means, find another doctor. Finding one that will listen to you and your concerns is quite important. They also need to be willing to explain to you what the various test results mean, and take the time to make sure you are understanding what is being said.

i have spent the last 2 years trying to sort out what was going on with my body.. some of the different issues do have actual physical causes, and others do not... like anxiety - that started with the whole covid thing, and the fact that I am someone at high risk since I have COPD.
I have since found out that i have arthritis in pretty much every joint, spine included, along with a couple of subluxated vertebra (one in the neck & one in the lumbar region) which have led to peripheral neuropathy and pretty nasty pain & headaches... so much fun...but in truth, it does not explain everything that has been going on - slowly getting worse and worse over the years...
I finally got a diagnosis of FM just a few weeks ago - after ruling out so many other problems.

in response to the original topic - i do get some muscle twitches.. usually in the hip/glute area... not the entire muscle group, just a small cluster at a time. most noticeable at night when trying to get to sleep. I also get a twitch around the eye from time to time... usually when very stressed.

I too was low on D (very low), and iron.. but pretty much everything else has come back in "normal" ranges

hope you can get things sorted out soon! Just remember to breathe!!

 

[sunkacola]

But what I'm unsure of, Nicole, is that you've been talking about ALS and not fibro and you haven't said whether you've got the diagnosis, are looking for it, suspect fibro, if some of your docs are suspecting it, others not etc....

Nicole: This is my question also. Would be very helpful if you gave us the answer to this.

 

[nicolecozzi]

I’m sorry, I am still searching for answers I guess. The neuro didn’t say fibro but just stress. He told me he knew i was there because I thought it was ALS. He said I passed all his tests and no need for further investigation. However this pain, twitching and other symptoms just isn’t sitting right with me. So to answer you, I don’t have a formal diagnosis yet.

 

[nicolecozzi]

Thank you so much for your reply! Trying to take it day by day. I appreciate the support so much. Wish you all well

 

[JayCS]

However this pain, twitching and other symptoms just isn’t sitting right with me. So to answer you, I don’t have a formal diagnosis yet.

Ah, I understand - and did you come to suspect fibro? Have you had a look at the latest ACR criteria attached, to see if your pain is widespread enough (and longer than 3 months), your other symptoms severe enough to possibly be fibro?

 

[nicolecozzi]

Yes, I felt like it was the only other possibility

 

[cookiebaker]

Yes, I felt like it was the only other possibility

it can take time to get a fibro diagnoses...
a couple of years ago, i swore i was hypothyroid, or at least borderline, but all my lab work showed "normal" - primary doc, and endocrinologist insisted there was absolutely nothing wrong with my thyroid (still not convinced entirely, but that is another story)
I have gone thru a lot of testing, to rule out pretty much every other cause of my pain, and other symptoms over the last couple of years... almost every week this past year i have had some sort of appointment.
I was finally given the fibro diagnosis July 19th - less than a month ago.

My point is, try not to worry/stress about things - that just makes things worse, but do be persistent in trying to find out what is going on.
Oh, and try not to search symptoms online, lol, that just leads to more stress. If you get a definitive diagnoses of something, then feel free to research it, but trying to self diagnose on the net is a bad idea

 

[Auriel]

My thyroid tests were all coming back normal too @cookiebaker (I was so convinced I saved and went private, had a ultrasound and my thyroid was a mess!) I changed my surgery they did a reverse to test if I was autoimmune and I was! (I'd always felt I was hypothyroid but tests were showing normal till a couple years ago)

 

[cookiebaker]

My thyroid tests were all coming back normal too @cookiebaker (I was so convinced I saved and went private, had a ultrasound and my thyroid was a mess!) I changed my surgery they did a reverse to test if I was autoimmune and I was! (I'd always felt I was hypothyroid but tests were showing normal till a couple years ago)

I do have mild autoimmune markers (1:80 - homogeneous) but no explanations on why. the standard tests for rheum arthritis, lupus, etc all came back negative.
i would love to get my own thyroid lab work done, but with no income at the moment, it is just not in the cards. Would cost me over $250 USD to do so.

 

[Auriel]

The blood test were done at my (now) surgery (it was the scan I went private for) I was getting narcoleptic and my throat was sore + voice was sounding weird but my (neglectful) previous surgery dr told me it was just anxiety (but i wasn't buying it) theres something going on if there's mild autoimmunity showing (I'd wanna know more too)

 

[JayCS]

My point is, try not to worry/stress about things - that just makes things worse, but do be persistent in trying to find out what is going on.
Oh, and try not to search symptoms online, lol, that just leads to more stress. If you get a definitive diagnoses of something, then feel free to research it, but trying to self diagnose on the net is a bad idea

Well I think the first part balances out the second: Symptom, diagnosis & treatment searches can be crucial if you have a non-worrying, calm attitude. (With a worrying attitude you probably start getting hypochondriac, which is silly / your own issue, because the websites are very clear to tell you not to and to get important things checked.)

Pro searches: I have had >10x more success searching symptoms, diagnoses and treatments online than asking docs, and added to that for me it doesn't lead at any stress at all, for me it's fun, is interesting, gives me hope, a feeling of self-efficacy, and of knowing all the backgrounds and what I'm doing.

"Pro" docs: Of course I've had everything checked, but most ideas for the checking don't come from the docs and they welcome them, usually can't give me any help whatsoever what my symptoms, diagnoses and according treatments are. But as I realized again this week with my sleep lab psychiatrist with whom I talk about my total situation and get a lot of support: The docs don't give me ideas, but my talking to them does. So whilst I'm down to only about 3-4 regular docs at the moment, plus at the moment specialists for praps alternative jab-ideas.

Examples, almost all pro searches:
Only healthrising (veryquickly) pointed me from jabs having FM, to MCAS. All my effective treatments of it are results of web searches. My allergist only confirms. That's a really big 'un. Explains my life.
My urologist could confirm he could find nothing, didn't give me diagnoses or help. Web searches pointed me to OAB and PBS. And that and/or symptom searches last week brought me to test food triggers. Same goes for hyperacidity & IBS (gastro & allergist), insomnia (sleep lab).
None of my successful treatments were suggested by docs, with 2 exceptions: Chinese acupuncture (pain doc) and for sleep passiflora (first psychiatrist - however I need to double the normal dose and add other things, it took me 3 tries and a year to realize that).

You two talking thyroid: My thyroid is something where web searches never fitted for me (so no worry on my part), then several docs put me on to getting it checked, Hashimoto suspicion, so I did get it double & treble checked, and sono and bloods said nothing to worry, but to keep it checked regularly just in case. So still nothing for me to worry about.
Docs looking for ankylosing spondylitis found a tumour in my spine. Probably harmless, not moving, the docs say a check every 2 years is enough now. I really don't give a damn. My cardio likes to check my vessels and lipids regularly, but I keep to the strict diet and supps instead of meds. No problem for her & me.
I was "born" anxious, developed social phobia, so it's not nature: I've learnt it, fought for it, with quite some therapy and ideas of my own. And I've got enough to do thinking up new strategies for what is real I don't have to worry about what might be. So turning just being anxious and thus unable to act upside down.... That's mindfulness for ya: Concentrating on the here and now, now on what was or might be....

 

[cookiebaker]

point taken, Jay... researching on your own is not a bad idea, as long as you dont get too fixated on one little thing.
Where the information comes from is also kind of important.. a friend and i joke about webmd all the time... "you have an ingrown toenail, you will get cancer and die" kind of joking... i dont particularly consider webmd a real good source - they are ok, and can lead to other resources, just use a bit of common sense with them. Same with Wikipedia type sites... take things with a grain of salt.
healthline is a better resource, as are places like Mayo Clinic, Cleveland clinic (in the US) and I am sure there are similar places in Europe that are highly regarded sources.
i do like to research things that show up in reports - like "phlebolith" - noted in an x-ray report - nothing to be overly concerned about, but since i had never seen this word before, i wanted to know what it was.

 

[JayCS]

webmd
Wikipedia type
healthline is a better resource, as are places like Mayo Clinic, Cleveland clinic (in the US) and I am sure there are similar places in Europe that are highly regarded sources.

Yep, definitely d'accord with all of this. The worst and most misleading site I think is fibromyalgiaresources. You can find "everything" on there, but only when you look closely do you see the grains of some truth. That's the one with the "251 symptoms of fibromyalgia (hard to believe)" - even that I admit having used however, whittling it down and improving the order to make my own overview.

 

[JayCS]

places like Mayo Clinic, Cleveland clinic (in the US) and I am sure there are similar places in Europe that are highly regarded sources.

Oops, I was gonna say: I haven't yet found a German site of similar repute, but haven't really looked to be honest. The German forum I'm on doesn't up at all come to any of my English ones, so also isn't a resource for pointing me to good resources. FMA UK is a basic resource site in the UK, but they also often measure things by what Mayo Clinic says. The English "equivalent" would be the site of the NHS, the National Health Service. FMA UK does point me to a German equivalent of itself, a fairly large charity, but without a forum. I've tried contacting them, let's see if they answer this year. The new UK fibromyalgia guidelines are on rcplondon.ac.uk (Royal College of Physicians). These are all reputable, but all only help for basics. For the nitty gritty of getting realistic ideas for our everyday life healthline, verywellhealth and healthrising have good ideas, but of these especially healthrising does occasionally seem to tout or sell certain things. I have a few basic German go to sites, but not for fibro, one is brilliant for all supps, with enormous detail, and one generally naturopathic, but lots missing there.
OK, now I know why I made a second post of this.... it was going to be 2 lines. That's how I always start .