Benign Fasciculation Syndrome and TMS

[dtsierra06]

Hi all! I know this thread started years ago, but I'd love to hear how you are doing. I was diagnosed with BFS a year ago. Sensory stuff is a lot better but I still have lots of twitching and other weird stuff. Was it really part of TMS? How is everyone feeling now?

 

[gooser]

I likewise would really appreciate hearing about updates. My BFS/TMS started 1.5 years ago. I've made some progress with the knowledge that this is TMS related (learned about TMS 6 months ago), but still have twitching and other symptoms such as tinnitus, neck/shoulder pain and tightness. Overall my twitching is a bit less than when it all started, but I still have seemingly random onsets of "hot spots". I'll go through a period of days without thinking about them much at all and then have some periods where they are fairly distracting. Thankfully I don't have them consistently in my eye and lips like I had earlier.

My sense is that BFS is certainly TMS (at least mine is), but unlike back pain issues where folks have reported immediate healing once they realized it was TMS, the nervous system and any chemical imbalances or other issues resulting from the ordeal will take a while to settle back down....you don't just "flip a switch" with this stuff. This condition didn't develop overnight and probably won't go away overnight.

Think about it...fasciculations have got to be at the top of the list distracting things to happen to your body...an ideal malady for your mind to be fearful of and preoccupied with to distract from emotions. Virtually every single person posting about BFS seems to have anxiety, fear, obsessions etc....we may not like to hear it, but we've got to stop looking at possible structural/dietary/viral reasons and look inward to do the hard work to not just get to feeling better, but more importantly deal with the emotional aspects knowing that the physical improvements will eventually come. The obsession around trying to find a "cure" is a preoccupation in and of itself and perpetuates the viscious cycle.

All I can say is that I fit the TMS mold and although it's frustrating that I haven't been "cured" from that realization, I have a sense of peace about things that I didn't have earlier. "Cast your burden upon the Lord and He shall sustain thee"...

 

[dtsierra06]

Yes it's definitely not hard to look at the list of possible explanations. I keep thinking diet, adrenal fatigue, etc. I did speak to the guy that owns the anxiety centre website, and he said it could actually take 2 years for your nervous system to recover/calm down but only after the anxiety has calmed down. I too for the TMS profile.

 

[mdh157]

I figured i'd post an update since I've been dealing with symptoms that seem to be BFS (which is really TMS according to several TMS docs and SteveO, including Dr. Schubiner). I have not been officially diagnosed with anything as of right now. My twitching started in Nov 2014 after several health-related worries. I was worried abt stuff but exercising regularly, twice a week strenuously. Abt a month prior to that I started to have pain in my hands/arms/legs/feet with no explanation and also a feeling of internal shaking that would come and go all over my body. To date I have had several trips to my GP, basic tests of strength/reflex/bloodwork, all of which have resulted in him shrugging his shoulders as it all appears normal. I think all these symptoms are related, and assuming that is correct that would put me at the 13.5 month mark. Googling drove my anxiety through the roof, I wouldn't recommend it unless you want to make your situation worse. Symptoms include pain in hands/arms/legs/feet, mainly in the hands though, bodywide twitching that is sometimes a one-hitter and sometimes stays in the same spot almost continuously for a few days, internal tremor feeling (comes and goes) and I also have occasional myoclonic jerks and rectal spasms at night. Have been seeing a CBT/TMS therapist for abt 6 months trying to work out my anxiety as it runs in my family. I have a neuro appt in March. Being over the 1 yr mark w/o the telltale symptoms of a serious illness it is a good chance it is benign but I am having a real hard time getting my mind wrapped around it (although I am doing better than I was at first, which was close to a basket case). I can do everything ok with no known loss of function. I'm fine sometimes and am able to talk my symptoms away but sometimes they still scare me quite a bit. Guess I am what a therapist would call a hard case.

 

[Huckleberry]

BFS really is a crock of diagnosis...it is the physical manifestation of anxiety pure and simple. I'm sure the whole BFS label was created so people could gain some acceptance of their symptoms after all it is far more acceptable to have a 'syndrome' than be told their weird and wonderful functional neurological symptoms are somehow 'in their head'.

Just to say I would avoid that BFS forum like the bloody plague. I ended up there about 6 years ago and reading some of the ill informed and misguided rubbish on there sent me into a tailspin of worry until I smarted myself up about what symptoms anxiety can cause.

 

[mdh157]

Huck, what drives people to worry abt BFS is the commonality between the early symptoms of *** and BFS. Agreed, it is a manifestation of anxiety but until people are sure they don't have *** they will frequent the BFS forums. There is a lot of misinformation going around as well on *** but that is a diff discussion altogether.

To be frank with you, I still have worries that I might have *** even after a year of twitching. Sometimes we Google and read to try and help ourselves and it has the opposite effect.

 

[inymyfruitcup]

Hey there mdh157,

I think after a year of this it's pretty safe to say you don't have ***. I know it's scary because one of my main things for the past few months has been muscle twitches, but unless you are losing function (which I'm not), it's just a manifestation of anxiety. You need to take solace in that, otherwise you'll drive yourself nuts.

And I specifically said "lose function" because I have on/off perceived weakness, but have not lost any motor function.

Set aside some time for yourself every day to relax. I know you've heard that a million times by now, but it's so necessary. March is a little ways off, so relax until then. I think you'll find that your neuro will tell you exactly just this.

Check out this thread where people talk about twitching and BFS.
http://www.tmswiki.org/forum/threads/struggling-with-tms-light.5192/

 

[mdh157]

Working on it inymyfruitcup........my anxiety is to the level where I think I am the outlier, if you know what I mean. I have been working on the diaphragmatic breathing and 2 days ago started cold water immersion on my face (is said to be helpful for prompting the relaxing response via the vagus nerve). Hopefully I'll get some results.

One thing this experience has done for me is made me change my life up a bit.......I have def simplified it and have been able to stop obsessing over some things that I was prior to this. I had a high stress part-time job that I left as well.

 

[Huckleberry]

Huck, what drives people to worry abt BFS is the commonality between the early symptoms of *** and BFS. Agreed, it is a manifestation of anxiety but until people are sure they don't have *** they will frequent the BFS forums. There is a lot of misinformation going around as well on *** but that is a diff discussion altogether.

To be frank with you, I still have worries that I might have *** even after a year of twitching. Sometimes we Google and read to try and help ourselves and it has the opposite effect.

Yeah, I know all about the worry of twitching and ALS...I had SEVERE health anxiety for 6 years which started with the typical anxiety 101 worry of MS and then morphed into the ALS panic.

I found the BFS forum and started reading through the threads and it just generated more and more anxiety for me...I was an active member on there for about 8 months and after I left there I noticed that my ALS worry calmed significantly.

Its a funny thing how so many health anxiety sufferers go from MS to ALS...it is almost like MS is no longer good enough to worry about so we have to concentrate on something nastier. Here is the thing and and I'm sure you know this anyway, twitching is in no way symptomatic of ALS! Yes, some people will twitch who have ALS but it is the result of the horn cell death in the muscle by the time you twitch you would have clear objective muscle weakness and dramatic loss of function.

ALS really isn't a disease that is subtle or hides itself away as such...a decent neuro would know if you had problems watching you walk into the consulting room...it has clear and well defined objective signs and symptoms.

TBH, I still twitch in my 'hot spots' till this day but ALS never even crosses my mind as I know it isn't a presentation of ALS...it is a presentation of physical anxiety and possibly magnesium deficancy...you honestly can put the worry to bed. Me? I just wished my back would stop hurting.

 

[inymyfruitcup]

That's great, keep up the good work.

These are the types of things that don't just go away over night, partly because they weren't created over night. Keep with the deep breathing. I think you'll notice that it has an "accumulative" effect of sorts after awhile.

 

[Huckleberry]

I can only concur with the above....these symptoms do not vanish overnight. For many people it can take years of chronic and insidious stress until the tipping point is reached when the body starts to feel physical anxiety symptoms, with that in mind it can take weeks, months or even years for your nervous system to get back in balance. The amount of times you hear people say that their symptoms cannot be anxiety because they are 'not feeling anxious' is amazing...it is very often it is not how you are in that moment but how you have been for the preceding years. A good analogy is if you ate rubbish food for 3 years, piled on 5 stones and then woke up one morning and decided to eat spinach...you aren't going to feel good and drop that weight overnight, its going to take time. Having said that whilst we may well feel we are not anxious about our symptoms/life etc in a given moment the fact that we are actually on a health related board on the internet suggests it may be playing on our minds a touch.

 

[mdh157]

Huck, This whole health thing really got started back in Nov 2011 (or 12, I forget right now) with strange sensations I was having........of which my doc mentioned MS, and that sent me into the abyss. CAT scan was clean, neuro examined me with no concerns of note......you may very well be right abt our minds wanting to worry abt the worst possible thing. I do not visit the BFS forums any longer as all it was doing was keeping my mind on twitching, which is exactly what I want to forget.

 

[Huckleberry]

Huck, This whole health thing really got started back in Nov 2011 (or 12, I forget right now) with strange sensations I was having........of which my doc mentioned MS, and that sent me into the abyss. CAT scan was clean, neuro examined me with no concerns of note......you may very well be right abt our minds wanting to worry abt the worst possible thing. I do not visit the BFS forums any longer as all it was doing was keeping my mind on twitching, which is exactly what I want to forget.

Yep, much the same for me. It is actually incredible how many people start off with the weird and wonderful neuro symptoms and head off down the MS route and then take a right turn at ALS a few months later.

Honestly dude don't worry about the twitching...I can sit in the bath and watch my calves going at it like a bag of snakes sometimes but it doesn't even concern me, as for the twitching eyelid which I've had on and off since 2007...ho hum.

Not sure if you have checked out any anxiety forums but I was Pan on anxiety zone a few years back...you can check out my story on there and I bet you every penny you have our stories pretty much mirror each others.

edit: oh yeah, myclonic jerks!? don't talk to me about myclonic jerks.

 

[inymyfruitcup]

Yep, much the same for me. It is actually incredible how many people start off with the weird and wonderful neuro symptoms and head off down the MS route and then take a right turn at ALS a few months later.

Honestly dude don't worry about the twitching...I can sit in the bath and watch my calves going at it like a bag of snakes sometimes but it doesn't even concern me, as for the twitching eyelid which I've had on and off since 2007...ho hum.

Not sure if you have checked out any anxiety forums but I was Pan on anxiety zone a few years back...you can check out my story on there and I bet you every penny you have our stories pretty much mirror each others.

edit: oh yeah, myclonic jerks!? don't talk to me about myclonic jerks.

I think I found "my people" in the TMS community between you and mdh157 haha

My main concerns are the fasciculations, myoclonic jerks, and fatigue I've been experiencing. But if you read my story I've had just about every kind of symptom a person can have.

You guys have numbness and perceived weakness? This is my other main troubling symptoms, but I know it's TMS/MBS as they are highly variable and tend to get worse the ore stressed I am.

 

[mdh157]

Yep, much the same for me. It is actually incredible how many people start off with the weird and wonderful neuro symptoms and head off down the MS route and then take a right turn at ALS a few months later.

Honestly dude don't worry about the twitching...I can sit in the bath and watch my calves going at it like a bag of snakes sometimes but it doesn't even concern me, as for the twitching eyelid which I've had on and off since 2007...ho hum.

Not sure if you have checked out any anxiety forums but I was Pan on anxiety zone a few years back...you can check out my story on there and I bet you every penny you have our stories pretty much mirror each others.

edit: oh yeah, myclonic jerks!? don't talk to me about myclonic jerks.

Tried to find your story on anxiety zone but no luck. I'm not registered there so that prob limits my search.

 

[mdh157]

I think I found "my people" in the TMS community between you and mdh157 haha

My main concerns are the fasciculations, myoclonic jerks, and fatigue I've been experiencing. But if you read my story I've had just about every kind of symptom a person can have.

You guys have numbness and perceived weakness? This is my other main troubling symptoms, but I know it's TMS/MBS as they are highly variable and tend to get worse the ore stressed I am.

one of my biggest issues is how it is affecting my sleeping........and everyone says, "get more sleep" as a way to combat anxiety, but until I am able to lower my anxiety I cannot get a decent nights' rest. I have numbness and other sensory things but they aren't too bad and don't seem to worry me much. When I was getting them prior to seeing the neuro a few yrs ago he prescribed something and the symptoms were 90% gone in a week or less. That is when I knew that those symptoms weren't anything to worry about.

I'm also working a lot on stretching to try and relax my muscles more, no idea if it is making a diff or not.

 

[Huckleberry]

I have had a huge variety of symptoms over the last 8 years...they wax and wane and some disappear totally whilst others tend to be more constant. Up to a few months back I was having pretty much constant daily headaches coupled with pretty severe derealisation and spaced out feelings, a bit of my old health anxiety did think about brain tumours but I knew this was unlikely. These symptoms persevered for just under a year and pretty much disappeared overnight. Literally as soon as these went I started having stomach issues which have been going on for about 3 months...this is is basically a really really loud grumbling stomach, bloated feeling, daily nausea and burping etc. Funny thing is I have never really had stomach issues with my anxiety and this is a very common 'entry' symptom, it is so weird that it literally started as soon as the other headache issue resolved but this is pretty much always the way, its actually termed symptom shifting.

The reason I am here (apart from the stuff above) is that I have had some back pain and sciatica type symptoms over the last 5 years but there is literally no logical rhyme or reason to them. I had an MRI and a benign tumour (neuroma) was discovered. This is very small and there is some question as to if it could be responsible for my pain or if it is purely incidental. My TMS therapist is convinced my back pain is mind/body generated and has sent my scan to Dr Hascomb to check out for his option.

All in all I am well aware that after 8 years of constant worry and stress that my nervous system is totally shot.

 

[mdh157]

All in all I am well aware that after 8 years of constant worry and stress that my nervous system is totally shot.

I think I'm in the same boat after several health-related scares. Almost all of the prior symptoms I was having and worrying abt have passed, I worried abt them for nothing, but now I have symptoms that make me worry even more.

 

[inymyfruitcup]

For me, this whole thing starts with terrible headaches after the dentist 5 years ago. And I've seen a lot of strange symptoms come and go haha

 

[Huckleberry]

I think I'm in the same boat after several health-related scares. Almost all of the prior symptoms I was having and worrying abt have passed, I worried abt them for nothing, but now I have symptoms that make me worry even more.

Well yeah, that's really the defining thing of the whole thing...you worry about a specific symptom, this resolves itself only another one to surface and the whole process to begin again. It's almost like we have to have something to worry about eh.