still trying to figure out this facial pain

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mamanan
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Date Joined Jun 2008
Total Posts : 846
   Posted 12/8/2009 9:17 PM (GMT -7)   
Yes, it's still there. No major attacks, but constant mild bg ache, pulling muscles, twinges, numbness, pinpricks, burning, stabs.... you name it.
Everywhere, in my mouth, gums, teeth, chin, tongue, ears, eyes.

So, how does fibro affect nerves? We do have nerve pain in our bodies with this DD, right? Before the amitriptyline (which was first prescribed to me for the facial pain), I had much more shooting/ stabbing type pains, especially in my legs and back. I still sometimes get them, like a lighting quick shin splint, or getting a taser to the spine. So does it stand to reason that maybe my fibro is more prone to attacking my face? My rheumy said he had several patients with facial pain, but as he was discharging me, I won't get to find out what the nature of these pains are.

Could it be that separate infections in my teeth made this existing nerve pain worse?
So then, doesn't it stand to reason that this condition, since it hasn't left, wasn't caused by my teeth? After all, it has been 1 1/2 years, steadily getting worse, never mind the big attacks.

This is so much on my mind again b/c I need to make an appointment to see my NP to get my script filled. I'm very nervous, as his supervising doctor told me point blank she doesn't know what else to do for me, and that doctors don't do teeth, thank you very much. They saw a sinus infection in the MRI, but like I said, I was getting over a cold. I'm still using the Neti Pot (the worst part of that is keeping my arm up! lol) but only noticed slight improvement in headaches that I had been getting behind my eyes (I thought it was a return of my ice pick headaches of last year), and a bit of a release in pressure on the cheekbones close to my nose. I never even noticed it until it was gone b/c I have other pains that took up my attention! :P

Do I push for a referral to a neuro? The problem with my doctor is that she really doesn't know anything about TN (She was reading info off her notebook, same as I got on the 'net). I'd be the first to tell her I don't have classic symptoms, but there is such a thing as atypical TN, and yes, even bilateral. Or even Atypical Facial Pain (The garbage diagnosis for facial pain, kinda like what fibro is to some in the medical community ;) -pls take this with a grain of salt!) But a neuro would be the better diagnostician for this, and I think I would get meds better suited to it.

Or is it just fibro? Then I don't need a neuro, do I? I should go back to my rheumy... who has just discharged me! argh!!! If the pains came raging back with a vengeance, I'd be banging on my doctor's door demanding to see someone who could help me. But since I can deal with it without even pain meds right now, I'm uncertain about my own sensations. Just like with the fibro... I can usually get on with my days ok, and when I'm at a doctor's appointment, typically in the am, I feel good. So when they ask me how I am, I say good! Fibro? Nope, doesn't affect me! I conveniently forget the flare of a week before, lol.

My dh wants me to make an appointment at the Lockwood Clinic in Toronto. I believe it's like the Mayo Clinic in the States. Again, I would be more amiable to making that call if I were in worse pain (like last month, or in July, or September). But i want to know... no NEED to know by this point, WHAT is causing this facial pain! I don't want the doctor to just give me a script that helps for a bit, then I have to keep upping it b/c it doesn't do the trick anymore. Am I the only one that sees a problem with that?

But if it IS just fibro pain, there is no why, is there? And I can accept that in the rest of my body.
So... could it be the same in my face?
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 12/9/2009 9:33 AM (GMT -7)   
My son suffers from his badly they can not tell him what it is he is only 21 and has a few times been told not to work so he had to give up his job, he will get over it only to have it come back bad a couple of months later. He suffers from Fibro and his lady was very worried until he brought her to talk to me about fibro now she is dealing better she was very worried about what was happening in his body.

Rob has even had teeth pulled out when it started they believed he had a infection in his jaw and that was their way of healing it, silly I know but they soon realised it was not working. He has just started a very good job and this time he will not be listening to the doctors.
As he tells it knowing it was the fibro and not something more serious is a relief to both of them and that stress has gone now. He also has TMJ is that it I am not sure I know I can not spell it.

Kathy from the land down under where we are having a heat wave in our state


Fibro, IBS, chronic fatigue, migraine

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 12/9/2009 3:22 PM (GMT -7)   
mamanan, My Dad has tic douloureux(trigeminal neuralgia). He has been taking Neurontin.
His attacks come and go, and are quite severe. He also had teeth pulled to try to stop the
pain. He hasn't had an attack for a while now. Hoping the doctors can help you!

Hugs
Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 12/9/2009 6:14 PM (GMT -7)   
Hi Mamanan
Just want to tell you what had happened to my face recently/
Back in 2002 had the new Dentist at my reg Dental office do a root canal on me.  My reg Dentist said she had done several and it would be cheaper than going to endodontists-root canal specialists.  So i let the Dentist do this procedure.  For over 2 hours sat in chair with her and then she tells me she is done for the day and would have to come back on Tuesday to finish.  She said she pulled all the nerves out and just had some finishing work to do.
Long story short it hurt so darn bad nerve pain after medicine wore off, I called my reg dentist and he called me in pain meds.
 I called a oral surgeon Monday morn and said I needed a tooth pulled. He talked me out of pulling the rest of the stump and saw it was infected.  Put me on some heavy antibiotics and gave me a name of endodontist.
Made an appt with Endo for the next week.  Finished my antibiotics the pain lessened.  Part of the pain was from an infection so my entire face hurt jaw teeth ears head etc...
Ok I will finish. Sorry so long!
  Endo did root canal.  All was fine. 
My reg Dentist called and checked on me when he got letter from Endo saying in nice terms what a piss poor job the other Dentist in his office did on my tooth.  As did the oral surgeon as I understand.  Anyway he said he would do my crown work himself for free sans me buying the gold. This was in 2002
But begin having face pain all over besides my migraine headaches I was having  a different type of headache , nerve pain, jaw pain, teeth pain etc...thoght it was the FM at that time.  Sometimes were worse than others.
Now have Dental insurance and went to Dentist in fall.  He took an xray and saw a huge infection under that crown.  He asked if it ever gave me trouble and I told him the symptoms I have sometimes that yes do seem to becoming more constant.  He said next time it is bothering you come in and we will have to extract it. 
It became so bad again one night could not sleep called Dentist he took it right out.
The infection was so big and bad it had eaten away most of my bone in that area. But after getting over the pain of the extraction and taking more antibiotics orally and inplanted in the hole in jaw I now have no more face pain.
Had this infection off and on for years with all that pain.  I chalked it up to FM plus I did not have dental insurance and was going thru a divorce could not afford it.
So there is an example of what it may be or as you can see Please do not lump every new symptom you have into the FM category b/c it may not be.
Good Luck to you and sorry it was long sometimes I ramble on...:)
 
Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 12/10/2009 4:12 PM (GMT -7)   
Kathy, did the doctors tell your son his facial pain WAS b/c of fibro? Did they explain it at all? I would be happy if I knew the WHY of this pain, and if I had some med I could put aside for when things get bad.

Robin, I've heard Neurontin is very effective with TN. I feel so sorry for your Dad. Are his symptoms classic?

Funny, I'm so glad that you are feeling better! What an ordeal you went through. This is what I'm dying to find out, if my symptoms are from fibro, if not, then I want to know what! The doctor and dentist both promised me the pain would go away. My other dentist just wants to take my money, she has absolutely no clue :(
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 12/10/2009 6:03 PM (GMT -7)   
Mamanan, It seemed to take forever for my Dad to get a diagnosis. He has so many other
ailments. At first the docs thought it was a dental issue and then he was referred to a
Neuroligist. His symptoms were pretty classic, his face was very sensitive to even the wind
or soft touch. He hasn't had an attack for over a half year now, so the Neurontin must be
helping. I'm so glad for that!
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 12/12/2009 8:44 AM (GMT -7)   
The wind bringing on an attack is one of the biggest reasons I just can not let this go. I've been having that since this whole thing started, just not very painful, and not all the time. I call it one of my neat parlour tricks, lol. But I get cutting sensations across my cheek sometimes when I'm outside on warm windy days. And I've discovered this year the cold really bothers my face too. I get earaches in the front of my ear and boring pain along the cheekbone from it. Since when have teeth done that?

Another question,
When my gums start to hurt, they are usually white. I asked my dentist, and she said that periodontal disease can make your gums pale that, but my gums looked healthy. It can also be a sign of anemia, but that would be all the time, not just when it hurts.
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 12/12/2009 9:34 AM (GMT -7)   
mamanan, my Dad's pain was always off and on pain too. He could have horrible pain
lasting a couple of weeks and then the pain would subside for a long period. When the pain
is on he has difficulty chewing and says sneezing really hurts.

I have read that some people are being treated with Lyrica for it.

You have had all the bloodwork to rule out any of the CTD's, haven't you? If you could get
a refferal to a Neuralogist that would help. Wishing you the best!

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

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