Fibro flare up & slurred speech.

[sunkacola]

Hi. I am new and apologies if I am speaking out of turn.
I am not sure what a flare up is yet because according to my notes my condition has only had one trajectory: worse. But on really bad days (like the ones I can do little more than sit on the sofa and moan), it feels like half of my face is numb and I slur my words. Because I can not seem to control my face, I also kind of can not get certain words out, mostly words that start with "B" or "M".
It is like I am still 'me' inside but my ability to make speaking happen is dampened.
My doc knows about it. We have not done anything about it yet.

Not out of turn at all.
A flare simply means that one or more of your symptoms of fibro get worse or start up at a certain time or following an activity or eating something or, with fibro, for no discernable reason.

Fibromyalgia is not a progressive symdrome, so it will not get worse automatically. It does not inherently have a trajectory of "worse".It will get worse if other syndromes or diseases enter the picture, or if your life becomes very stressful, or simply because your body is agine, if you don't take really good care of it and exercise and so on. You are dooing those things, so there is no need for you to expect the fibro to get worse, excspting the fact that once a person gets old things just don't work as well, fibro or not.

Mushy speech is a factor of fibro. But half your face being numb is not a symptom found in fibromyalgia, so I think it's possible something else is going on there.

We always recommend that at any time you experience a NEW symptom, you go to a doctor and ask for it to be checked out because it could be something else you need to know about. You doctor knows, so you are on the right track.

Have you had a formal diagnosis of fibromyalgia? And what method, if you have, did the doctors use to diagnose?

 

[AhZo]

This is why I find my diagnosis as dubious: I do not experience 'flare ups'.
I was initially logging my pains but that was a serious task. As an example, in 2 hours I logged 77 incidents of 10 different kinds of pain (I have as many different names for types of pain as a PacNW'r has for types of rain), in abuot 25 different specific body parts. Since my diagnosis, I started just making a general pain level noted at 4 times during the day.

The 7 day rolling average of pain has been steadily increasing. I have many days of what I call "9" (which is when I can do nothing more than lay on the sofa and moan, cry out during the shooting pains, etc), but I have not averaged a day under a 5 in memory, possibly in the last year. My rolling 7 day average is around a 7.25 right now. (read: wit's end, so apologies if I am not understanding things)

I believe I ended up here because I was confused about the 'flare ups'.

Thank you for the clarification.

 

[AhZo]

Hi @AhZo , welcome to the forum ️ , thanks for the info, I've had similar experiences with left side of my face in the past (the numbness and also strange movements, kinda made me fear stroke or parkinsons) well when I speak about flare ups (for me) it's like the symptoms already there are really really magnified (that's how I explain mine) I hope you get the tests and checks you need to find out what's going on to get things sorted for your peace of mind ️

Yes, that is more like my experience. The aches and pains are low level constantly, but easily put out of mind - then they trade off at screaming at me. So today my left ankle wants to make my life miserable and my right ankle is sore, but I do not notice it because the left one hurts more. Maybe tomorrow they swap.

Expand that to every other part of my body.
Whee!

 

[Auriel]

Oh I know what that's like @AhZo
yep your in the right place comrade

 

[JayCS]

half of my face is numb and I slur my words.

similar experiences with left side of my face in the past (the numbness and also strange movements,

Could these have to do with the trigeminal nerve?
(If it's not with pain then not trigeminal neuralgia or cluster headaches though.)

 

[Auriel]

I dunno Jay could be to do with that half my face has a life of its own sometimes ???????

 

[JayCS]

This is why I find my diagnosis as dubious: I do not experience 'flare ups'. I was initially logging my pains but that was a serious task. As an example, in 2 hours I logged 77 incidents of 10 different kinds of pain (I have as many different names for types of pain as a PacNW'r has for types of rain), in abuot 25 different specific body parts. Since my diagnosis, I started just making a general pain level noted at 4 times during the day. The 7 day rolling average of pain has been steadily increasing. I have many days of what I call "9" (which is when I can do nothing more than lay on the sofa and moan, cry out during the shooting pains, etc), but I have not averaged a day under a 5 in memory, possibly in the last year. My rolling 7 day average is around a 7.25 right now. (read: wit's end, so apologies if I am not understanding things). I believe I ended up here because I was confused about the 'flare ups'.

when I speak about flare ups (for me) it's like the symptoms already there are really really magnified (that's how I explain mine)

Yes, that is more like my experience. The aches and pains are low level constantly, but easily put out of mind - then they trade off at screaming at me. So today my left ankle wants to make my life miserable and my right ankle is sore, but I do not notice it because the left one hurts more. Maybe tomorrow they swap. Expand that to every other part of my body.

Hi AhZo - flare ups are no criterion / necessity for it to be fibro, your very widespread pain and your other severe symptoms (IBS, depression - and praps insomnia?) are.
But your many "9" days do sound like flares in comparison to your average of 7/7.25. Of course if 7 is your average you don't have any more headroom for a flare to get any higher. That would explain it just feeling like a magnifying effect like you're agreeing with Auriel about. Also you might consider your state at the moment firstly to be generally one continual full flare. And the "progression" to be a slow further flare on top of that. What a flare means as opposed to progressive is that it would pass. Whether or not that is the case with you, time will tell. But if your various issues aren't making it possible to actively do anything against the symptoms, then a worsening is likely because of that.

To be able to get a little bit of wriggle room again in this difficult situation, I can imagine that one carefully selected med might be able to act as a life belt for a time, during which you could find other less harmful treatments. I can very much imagine why duloxetine/Cymbalta was chosen, for some it does help more than harm, pity it didn't for you, and it's good to then quickly stop it like you now have.
It's one of the ones with most evidence to help with fibro like pregabalin/Lyrica, amitriptyline, nortriptyline, whilst gabapentin only has evidence for neuropathic pain, but does seem to help some people.

However seeing you were able to distinguish 10 pain types I'd hope that ability may help you start not just to identify and distinguish various local pains, overall pain, and also other symptoms, then also discover triggers, and then prevent or alleviate them more and more with other treatment types.
At least I've found that to be more than half the battle.
This may hardly be possible on "9" days, but if your average is around 7, then on your "5.5" days maybe you can track possible negative and positive triggers (incl. treatments) and gradually identify them. Have you tried that already?

This is why I find my diagnosis as dubious: I do not experience 'flare ups'. I was initially logging my pains but that was a serious task. As an example, in 2 hours I logged 77 incidents of 10 different kinds of pain (I have as many different names for types of pain as a PacNW'r has for types of rain), in abuot 25 different specific body parts. Since my diagnosis, I started just making a general pain level noted at 4 times during the day. The 7 day rolling average of pain has been steadily increasing. I have many days of what I call "9" (which is when I can do nothing more than lay on the sofa and moan, cry out during the shooting pains, etc), but I have not averaged a day under a 5 in memory, possibly in the last year. My rolling 7 day average is around a 7.25 right now. (read: wit's end, so apologies if I am not understanding things). I believe I ended up here because I was confused about the 'flare ups'.

when I speak about flare ups (for me) it's like the symptoms already there are really really magnified (that's how I explain mine)

Yes, that is more like my experience. The aches and pains are low level constantly, but easily put out of mind - then they trade off at screaming at me. So today my left ankle wants to make my life miserable and my right ankle is sore, but I do not notice it because the left one hurts more. Maybe tomorrow they swap. Expand that to every other part of my body.

Hi AhZo - flare ups are no criterion / necessity for it to be fibro, your very widespread pain and your other severe symptoms (IBS, depression - and praps insomnia?) are.
But your many "9" days do sound like flares in comparison to your average of 7/7.25. Of course if 7 is your average you don't have any more headroom for a flare to get any higher. That would explain it just feeling like a magnifying effect like you're agreeing with Auriel about. Also you might consider your state at the moment firstly to be generally one continual full flare. And the "progression" to be a slow further flare on top of that. What a flare means as opposed to progressive is that it would pass. Whether or not that is the case with you, time will tell. But if your various issues aren't making it possible to actively do anything against the symptoms, then a worsening is likely because of that.

To be able to get a little bit of wriggle room again in this difficult situation, I can imagine that one carefully selected med might be able to act as a life belt for a time, during which you could find other less harmful treatments. I can very much imagine why duloxetine/Cymbalta was chosen, for some it does help more than harm, pity it didn't for you, and it's good to then quickly stop it like you now have.
It's one of the ones with most evidence to help with fibro like pregabalin/Lyrica, amitriptyline, nortriptyline, whilst gabapentin only has evidence for neuropathic pain, but does seem to help some people.

However seeing you were able to distinguish 10 pain types I'd hope that ability may help you start not just to identify and distinguish various local pains, overall pain, and also other symptoms, then also discover triggers, and then prevent or alleviate them more and more with other treatment types.
At least I've found that to be more than half the battle.
This may hardly be possible on "9" days, but if your average is around 7, then on your "5.5" days maybe you can track possible negative and positive triggers (incl. treatments) and gradually identify them. Have you tried that already?

These are some of the ways I prefer to improve symptoms, rather than suppress them with meds.
Others are mental and physical treatments of many kinds and some more unusual supps.
Had lots of success with that, and meds only harmed.
I did use amitriptyline as a life belt for 4 months, but I'd've been better off if I hadn't....

 

[fibrogav]

Hi. I have recently been diagnosed. I have had symptoms for years though. I have had slurred speech at times. It does sound like I'm drunk. It usually happens when I am extremely fatigued. It is informative to know that others are experiencing similar symptoms. Hope you are well.

 

[Charz]

Sounds like TMJ. Have you been checked for it?

 

[AhZo]

Hi AhZo - flare ups are no criterion / necessity for it to be fibro, your very widespread pain and your other severe symptoms (IBS, depression - and praps insomnia?) are.
But your many "9" days do sound like flares in comparison to your average of 7/7.25. Of course if 7 is your average you don't have any more headroom for a flare to get any higher. That would explain it just feeling like a magnifying effect like you're agreeing with Auriel about. Also you might consider your state at the moment firstly to be generally one continual full flare. And the "progression" to be a slow further flare on top of that. What a flare means as opposed to progressive is that it would pass. Whether or not that is the case with you, time will tell. But if your various issues aren't making it possible to actively do anything against the symptoms, then a worsening is likely because of that.

To be able to get a little bit of wriggle room again in this difficult situation, I can imagine that one carefully selected med might be able to act as a life belt for a time, during which you could find other less harmful treatments. I can very much imagine why duloxetine/Cymbalta was chosen, for some it does help more than harm, pity it didn't for you, and it's good to then quickly stop it like you now have.
It's one of the ones with most evidence to help with fibro like pregabalin/Lyrica, amitriptyline, nortriptyline, whilst gabapentin only has evidence for neuropathic pain, but does seem to help some people.

However seeing you were able to distinguish 10 pain types I'd hope that ability may help you start not just to identify and distinguish various local pains, overall pain, and also other symptoms, then also discover triggers, and then prevent or alleviate them more and more with other treatment types.
At least I've found that to be more than half the battle.
This may hardly be possible on "9" days, but if your average is around 7, then on your "5.5" days maybe you can track possible negative and positive triggers (incl. treatments) and gradually identify them. Have you tried that already?




Hi AhZo - flare ups are no criterion / necessity for it to be fibro, your very widespread pain and your other severe symptoms (IBS, depression - and praps insomnia?) are.
But your many "9" days do sound like flares in comparison to your average of 7/7.25. Of course if 7 is your average you don't have any more headroom for a flare to get any higher. That would explain it just feeling like a magnifying effect like you're agreeing with Auriel about. Also you might consider your state at the moment firstly to be generally one continual full flare. And the "progression" to be a slow further flare on top of that. What a flare means as opposed to progressive is that it would pass. Whether or not that is the case with you, time will tell. But if your various issues aren't making it possible to actively do anything against the symptoms, then a worsening is likely because of that.

To be able to get a little bit of wriggle room again in this difficult situation, I can imagine that one carefully selected med might be able to act as a life belt for a time, during which you could find other less harmful treatments. I can very much imagine why duloxetine/Cymbalta was chosen, for some it does help more than harm, pity it didn't for you, and it's good to then quickly stop it like you now have.
It's one of the ones with most evidence to help with fibro like pregabalin/Lyrica, amitriptyline, nortriptyline, whilst gabapentin only has evidence for neuropathic pain, but does seem to help some people.

However seeing you were able to distinguish 10 pain types I'd hope that ability may help you start not just to identify and distinguish various local pains, overall pain, and also other symptoms, then also discover triggers, and then prevent or alleviate them more and more with other treatment types.
At least I've found that to be more than half the battle.
This may hardly be possible on "9" days, but if your average is around 7, then on your "5.5" days maybe you can track possible negative and positive triggers (incl. treatments) and gradually identify them. Have you tried that already?

These are some of the ways I prefer to improve symptoms, rather than suppress them with meds.
Others are mental and physical treatments of many kinds and some more unusual supps.
Had lots of success with that, and meds only harmed.
I did use amitriptyline as a life belt for 4 months, but I'd've been better off if I hadn't....

Thank you @JayCSciate y
I appreciate the response.
Are what is considered flarups something that passes in minutes, hours, or days?
I was prescribed amtryiptyline for IBS, but Iwould rather be abloe to poop once in awhile.
The duloxetine was useless for me.

 

[AhZo]

Could these have to do with the trigeminal nerve?
(If it's not with pain then not trigeminal neuralgia or cluster headaches though.)

How would one tell?

 

[JayCS]

How would one tell?

One could try the "Clinical Tests For Examination Of Trigeminal Nerve (5th Cranial Nerve)" (allmedtests com) and/or get a neurologist to test. I'd think the likelihood is high, cos as "tri" suggests it branches 3-fold, so is the main facial nerve, and is actually split right and left.
To decide whether it seems to be more TMJ, like @Charz suggests, or trigeminal neuralgia, or something else similar, "TMJ vs. Trigeminal Neuralgia: How Do I Know the Difference?" by neurosurgeonsofnewjersey might help. But your PCP/GP should be able to decide better if a neurologist or a pain doc should be referred to.

 

[JayCS]

Ah, this post seems to have been held back in the moderating queue, not sure why?

Are what is considered flarups something that passes in minutes, hours, or days?

Yes! Well, OK: I'd divide "flare ups", or flares for short, into

• short term ones which will be hours or days,
• seldom minutes (that'd be other conditions than fibro, e.g. allergic reactions),
• long term ones being weeks, months and arguably years.

A long term flare (more a bush fire) can easily get short term ones on top of that.
The more we can get our "fires" under control ("simmering"), the shorter the additional ones may be, because they are their triggers easier to identify and get under control again.

I was prescribed amtryiptyline for IBS, but Iwould rather be abloe to poop once in awhile.

Didn't realize that, amitriptyline did nothing for my IBS, only an elimination diet has it almost completely under control. food / IBS triggered flares would belong to the short term ones, unless someone hasn't got it under control in any way.

The duloxetine was useless for me.

Yup. All meds were useless & harmful for my fibro...
Only an antihistamine is helping my long term = month long jab triggered MCAS flare again, with for instance long term quick exhaustibility (possibly still worsening after a month, not sure yet), worse cold tolerance and more frequent and severe short term (= hours) flares of burning sinuses, skin etc., nausea, white lips, pale face, depending on various triggers like food and activities.

 

[Auriel]

I always thought TMJ was a jaw thing causing pain and clickiness? (oh I am gonna learn a new thing, please tell me so )

 

[JayCS]

I always thought TMJ was a jaw thing causing pain and clickiness? (oh I am gonna learn a new thing, please tell me so )

Hope you're not too disappointed , but I think you're right that numbness, word slurring and strange movements have nothing to do with TMJ. The comparison with the trigeminal is only as regards pain.