Unusual new symptom

Okay, TN gurus…I have a new symptom, and, frankly, I am not sure if it is my TN of fibromyalgia…both plague me.

Here it is: I had all of my ‘tells’ that a flare was coming and it did…along with swelling (that happens to me) and what seems to be either a knot or a muscle spasm that literally is preventing me from opening my mouth more than several millimeters. I can only nibble at food, as my mouth with truly not open. It really feels like I have a muscle knot in my face.

Anyone ever have this before? Any suggestions?

Thanks-

Saber

Hi Sleopard-
Really sorry you are having a flare. I also will get swelling especially where the trigeminal nerve is near my nose on the right. In this situation the cream sometimes will help for me.
As far as maybe it being related to fibromyalgia causing pain I don’t know as I don’t have that and am very sorry that has to complicate things for you.
Feel better…

Thanks, Moxie…it is the darnedest thing. I do get relief from my cream…but it still bothers me.

Yes, my cream only gives partial relief too especially when a symptom is so bothersome. Having multiple diagnoses in my opinion really complicates things too.
The ‘new’ out of the blue symptoms sometimes take me by surprise too.

How long have you had TN and Fibro? Did they occur at the same time?

I have had fibro for eleven years…it took me about five years and eight doctors for me to actually accept that I had fibro (I thought it was a ‘throw away’ diagnosis). The TN came first in 2007 for two months, then went away for YEARS…came back in December of 2011, briefly… then came full on in January of 2012 with not relief until October…thank goodness I was diagnosed separately…I can’t imagine how confusing that multiple diagnosis process would be concurrently. The out of the blue things always freak me out. This knot is wild. Thank goodness for the cream, as it at least takes the edge off.

Do you have multiple diagnoses, too? How long have you had TN?



Moxie said:
Yes, my cream only gives partial relief too especially when a symptom is so bothersome. Having multiple diagnoses in my opinion really complicates things too.
The 'new' out of the blue symptoms sometimes take me by surprise too.
How long have you had TN and Fibro? Did they occur at the same time?

Hi there…click on groups tab above…there is a tn with fibro group!

Interesting! Thanks!

Just joined it! Thanks again!



Kc Dancer Kc said:
Hi there....click on groups tab above....there is a tn with fibro group!

Wow, yes I can see accepting a diagnosis that some just knowingly or unknowingly discard. I am glad you had a long period of remission. Does Neuro treat both TN and fibromyalgia?

Yes, I do have several diagnoses. I have a traumatic brain injury from a high impact head on collision. I had a hard time to time to accept that like yourself with the fibromyalgia. Brain injuries can be inconclusive and I guess I needed something black and white with no grey area to accept it. Nobody else did though.

I also had GI cancer 2 years ago. From my treatments I have peripheral neuropathy but that has been feeling so much better. I have had my ATN pain for 8 yrs but was diagnosed about a month ago. The occipital neuralgia was diagnosed about 6 months ago. For sure concurrent diagnoses are difficult to accept and also try to navigate through health and insurance systems. I would much prefer painting or something, anything! At least here to talk about it! :slight_smile:

Theoretically, he should. However, he was a diagnostic neurologist and his after diagnostic care was sub-par. He finally admitted to ‘not really treating TN patients long term’. Really?! Wow. So, he sent me to a fantastic pain specialist, since all of my diagnostic stuff was done…now on to the challenge of pain control.

It is so hard to accept a grey area diagnosis…I am a black and white person, too…the grey area is hard to rationalize…plus, I have had people roll their eyes when I say ‘fibro’. One even suggested that I just had a low pain threshold. Seriously. I honestly have a ridiculously high pain threshold, so all I could do was laugh (beats punching the idiot in the throat, hahahaaaa)

I am sorry about the GI cancer, I had melanoma in 2007 and again in May of this year…luckily just surgical removal, but that ‘c’ word is scary…and life-changing. I am glad the peripheral neuropathy has been better, that is terrible stuff!

These multiple diagnosis things are rough. I suspect I have occipital neuralgia, too, but that seems very new and I have yet to mention it to my doc…well, I have not left it out, it literally just started a bit and I am waiting until my next appointment to discuss it. I would so much rather read, write, paint…anything! But, I am crazy grateful to have this group, because truly, no one else understands…even if they start off strong with being kind, it wears them down and out and I end up feeling like a burden. Unacceptable, I loathe that feeling. I am quite thrilled to have this place to feel ‘normal’! :slight_smile:

Hi Sleopard,

I get a "knot" under my chin just inside my jaw bone. I describe it as a "charley horse" type of pain. I press and rub it and it goes away. Sometimes a attack follows and sometimes a burning pain in the jaw follows. I can usually tell it is coming and stop it before it gets to bad.

Scott

This is a great place to come for info, support etc! I saw the have a brain injury section too! I think they have thought of everything.
The ‘c’ word is very scary but melanoma isn’t like they said ‘flu’ so even more scary as opposed to basal cell, but none of it is acceptable.
I also have experienced the ‘friend’ burn out. They weren’t friends to begin with. Some people just can’t handle the bad. If I dumped someone every time they said something I didn’t like or they went on the same topic too much I would have no one!
Reading, writing and art are very interesting and reliable friends!

Scott, me too! I have had those before…the cheekbone one was a new one for me, but, I know it is TN…I felt my fibro areas and this one and they are not alike…plus, my TN is in flare, so it makes more sense…just weird! On the plus side, it made that half of my face look way younger! Hahaha, the swelling made my smile lines go away! Always best to focus on the positive! (I say this while typing with one eye open, one hand on the keyboard and the other pressing like crazy on that knot!)



Scott said:

Hi Sleopard,

I get a "knot" under my chin just inside my jaw bone. I describe it as a "charley horse" type of pain. I press and rub it and it goes away. Sometimes a attack follows and sometimes a burning pain in the jaw follows. I can usually tell it is coming and stop it before it gets to bad.

Scott

Moxie,

My friends are pretty awesome, although I tend to not commit myself when I am in flare…and they have been cool about not making me feel flaky if I have to cancel. My caregiver is the one who seems to not quite be on board with this new round. I think it is because I am trying really hard to stay mobile and ‘me’, but I possibly am expecting a person to be a mind reader and that is not fair.

Yeah, no, the ‘flu’ word is not nearly as traumatic! My mom gets basal cell ones and those are awful to heal from…but not the ‘c’ word, thank goodness.

I think I am close to having a full-fledged pity party. Darn remission got me cocky and I felt so much more ‘in control’ of the (and I use this word lightly, as no flares are little, but some go away kind of fast) little flares…but a big bad one has jumped up and bitten me and I have battled it back for almost three weeks, all while trying to run the house and work two jobs. I am clearing my calendar after tomorrow and just giving in to my body. Maybe being more rested will help me battle this back into a remission cycle? Either way, I am spread too thinly and something has got to give…and it won’t be me! Hahahahahaha. Lessons learned from TN…



Moxie said:
This is a great place to come for info, support etc! I saw the have a brain injury section too! I think they have thought of everything.
The 'c' word is very scary but melanoma isn't like they said 'flu' so even more scary as opposed to basal cell, but none of it is acceptable.
I also have experienced the 'friend' burn out. They weren't friends to begin with. Some people just can't handle the bad. If I dumped someone every time they said something I didn't like or they went on the same topic too much I would have no one!
Reading, writing and art are very interesting and reliable friends!

I like your positive attitude! A positive attitude is good medicine although it can be hard to have one when the TN monster is relentlessly pounding on your face. Keep looking forward.

Sleopard41 said:

Scott, me too! I have had those before...the cheekbone one was a new one for me, but, I know it is TN..I felt my fibro areas and this one and they are not alike..plus, my TN is in flare, so it makes more sense..just weird! On the plus side, it made that half of my face look way younger! Hahaha, the swelling made my smile lines go away! Always best to focus on the positive! (I say this while typing with one eye open, one hand on the keyboard and the other pressing like crazy on that knot!)




Scott said:

Hi Sleopard,

I get a "knot" under my chin just inside my jaw bone. I describe it as a "charley horse" type of pain. I press and rub it and it goes away. Sometimes a attack follows and sometimes a burning pain in the jaw follows. I can usually tell it is coming and stop it before it gets to bad.

Scott

Yes, I too am fortunate these days to have understanding friends that understand good days versus bad days. When I had my accident I was still in my twenties with a 5 yrs recovery expected so a lot of my friends were still not yet settled.
I hear you too about the fine line with the caregiver. We have pain and think its written all over and obvious only to know it isn’t so we should have spoke up!
If you need to have a pity party have one! It sounds like you are on the healthy path when you know you are going to flare and don’t force yourself to do things but pull back and take care of you.
Happily I am feeling no pain right now as I went on the tegretol and then neurontin so cocky I can relate to.
How do you work two jobs in so much pain? Do you have children as well?

Hi Sleopard



So sorry you’re having these “extra” problems.



I’ve had fibro since '95 and TN since 09. Also glossopharyngeal neuralgia and hemifacial spasm that starts on the lip on the TN side and pulls my face into grotesque positions. So I’m wondering if your mouth problem is a kind of hemifacial occurrence. Like Scott, I manually work the spasms out. When I even feel one coming on I stop it as best I can. I do not want my brain to learn new patterns! Sometimes they happen when I’m talking too much, or when I’ve had too much irritation from being in the car, etc. they especially happen if someone asks me to explain what the pain is, or what TN is. My TN does not like to be discussed! (Does anybody else have this issue!)



I also have terrible scalp pain at the back of my head. My neurologist thinks this is “convergence”, where the TN pain spills into C2-C3 and gets it all worked up too.



My mouth spasms are not fibromyalgia related. It is from the VII cranial nerve. Either it is being compressed too, or again, it is spill over from V. I have a consultation with a NS Aug. 6th to get more info.



I think you need to let your pain specialist know what is going on. I make diagrams now, don’t trust that I’ll be able to explain properly. Also, I video the hemifacial spasms. Perhaps you could document your mouth symptoms too.



And yes, Moxie, reading, writing and art never let me down-:slight_smile:



Bellalarke

Bellalarke-
Interesting explanation of why you have facial spasms. There is so much information regarding TN on here especially. Also, sorry that you have to deal with this pain.
Do you paint, write or draw to help you through this or did you even prior?



Bellalarke said:
Hi Sleopard

So sorry you're having these "extra" problems.

I've had fibro since '95 and TN since 09. Also glossopharyngeal neuralgia and hemifacial spasm that starts on the lip on the TN side and pulls my face into grotesque positions. So I'm wondering if your mouth problem is a kind of hemifacial occurrence. Like Scott, I manually work the spasms out. When I even feel one coming on I stop it as best I can. I do not want my brain to learn new patterns! Sometimes they happen when I'm talking too much, or when I've had too much irritation from being in the car, etc. they especially happen if someone asks me to explain what the pain is, or what TN is. My TN does not like to be discussed! (Does anybody else have this issue!)

I also have terrible scalp pain at the back of my head. My neurologist thinks this is "convergence", where the TN pain spills into C2-C3 and gets it all worked up too.

My mouth spasms are not fibromyalgia related. It is from the VII cranial nerve. Either it is being compressed too, or again, it is spill over from V. I have a consultation with a NS Aug. 6th to get more info.

I think you need to let your pain specialist know what is going on. I make diagrams now, don't trust that I'll be able to explain properly. Also, I video the hemifacial spasms. Perhaps you could document your mouth symptoms too.

And yes, Moxie, reading, writing and art never let me down-:)

Bellalarke

Hi Sleopard,
I have had this happen to me, I understand the frustration u must be feeling. I am very glad u posted this as I was unaware of the possibility of having multiple diagnosis when TN is already dominant!