some good, some bad

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Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 8/25/2009 5:50 PM (GMT -6)   
The good news is my facial pain is getting better. The side that had the horrible pain is fairly quiet. My left side is acting up, but it's not bad. There is very little pain in my teeth, which I take as a good sign. Each time I got the heavy waves of pain, I had tooth pain first. The other good news is I lost 5 lbs last week b/c I couldn't eat anything other than warm soup, and even that was a stretch some days. I've put about 2 back on since Sunday, but I'm happy that I'm still in the red.

The bad news is I guess my ibuprofen days are over since I had the black bm's.

I saw the doc today, that supervises my NP. I like her much better than the last doc, she is very attentive. She admits to not knowing very much about trigeminal neuralgia, and some of what I was telling her she was shaking her head that it didn't fit. But she ordered an MRI and we'll go from there. From the info I found on a TN forum, MRIs don't usually show much though. I just pray that I don't get anymore waves of pain like that until they figure out how to help me.

Thanks for listening :D
possible fibro and trigeminal neuralgia
taking 50 mgs amitriptyline, 500 mgs 2/day Naproxen

New Member

Date Joined Aug 2009
Total Posts : 19
   Posted 8/25/2009 6:51 PM (GMT -6)   
Dear Mamanan --
Excuse the long post, but I'd appreciate your keeping me up to date on what you find out with your facial pain.  I've been experiencing the same thing for the past two years.  I've dealt with the symptoms of FM and CFS for 15 years now, but the pain in my face, neck, jaw, ears, and glands has only been a problem for the past two years.
The winter of 2008 was horrendous for me with the pain.  For several months the pain was 24/7.  I didn't want to go on any type of prescription pain reliever, so I was taking acetaminophen around the clock since it has always been the OTC most effective on pain for me.  (For me, ibuprofen in all its forms hasn't ever been effective for pain.)
Whenever the pain was unbearable, I'd also put a hot pack on my face and jaw.  Though the heat was somewhat soothing, nothing seemed to fully cut the pain.  At times I probably had minor burns on my face in an effort to stop the I was in.  Thankfully, by late spring and summer the pain would just come and go, but was much more bearable, with just occasional bouts on through the fall.
Then, right at the beginning of 2009 ... it all returned with a vengeance.  I was once again taking acetaminophen around the clock, but was still livid with pain half the time.  I was desperate for relief and finally tried some aspirin in addition to the acetaminophen.  (I hadn't had any luck with aspirin for pain relief since I went through puberty ... but I figured it was worth a try!)  What a world of difference it has made for me.  I then tried alternating acetaminophen and aspirin so as not to be taking so much of the acetaminophen.  (Worries me about the liver over-load.)  I have been thrilled that aspirin has been effective for pain relief once again.  Perhaps it's because I'm menopausal?  Hmmm ...
Then one day in mid-January, I was visiting my Mother.  Her front room has a beautiful view of the mountains that surround our homes in the valley where we live.  As we were talking, I could see an inversion move in ... the pollution mixed with the fog moved in much like the mist of death in the old movie The Ten Commandments.  Almost instantly I was stricken with that horrible pain once again.  Since that time, I've tried to notice what is going on in the atmosphere and the quality of the air on days that the pain is worse.  I've now realized that bad air quality is one of the main triggers of my pain.  There are many other triggers when things are bad, but air quality seems to be at the top of the list.
The one godsend for me has been that aspirin has greatly helped with not only the pain ... but I believe that it also seems to help with whatever type of inflammation process is going on in my face, neck, head, ears, and glands.  More research is also needed on my part regarding the use of aspirin since  I haven't taken it for my entire adult life.
I've been doing some online research on the matter of my face pain.  There seems to be more information regarding Myofascial Pain Syndrome (MPS) aimed at doctors, dentists, and therapists.  It has been an accepted field of medicine for quite some time now.  I find it interesting that the info about MPS on the internet leads me to mainly medical textbooks and reports, whereas, anything about CFS and FM is more in the area of popular books for the public in the health and fitness arena.  I find that very interesting and plan to follow up on it. 
Another thing that I have noticed is that whenever there are medications on the market for doctors to prescribe for a condition, the prevalence of diagnosing that condition seems to increase.  Hmmmm ...
Okay ... I'll stop blabbering!
Here's to better health for the both of us ... for all of us!!!  ~*~ Karen  turn free2bfree

Regular Member

Date Joined Jan 2009
Total Posts : 386
   Posted 8/26/2009 10:06 AM (GMT -6)   
Hey Mamanan :-)

I'm so glad to hear your pain level has gone down tremendously. Let me know about the MRI, that will be interesting.

Since you are the only one thus far I can totally relate with. My pain is low. I was getting some awful pain in my eye/forhead (shooting pains) on monday. It would make me stop what I was doing and close and cover my eye with my hand. Ouch, I hate when I get those. Its seems to always be 'in' my ear, down the into my neck when its at a dull roar.

{{Hugs}} Take Care...... :-)
Fibromyalgia, Atypical Trigeminal Neuralgia, Gastritis
300mg Gabapentin, 50mg Pristiq, Vitamin D3, Vitamin E, Ultracet

New Member

Date Joined Aug 2009
Total Posts : 19
   Posted 8/26/2009 2:33 PM (GMT -6)   
Sooooo ... Mamanan and Binki --
What do you do for your face/associated face pain other than take pain meds?  Have your doctors talked about how the Trigeminal Neuralgia relates to the other symptoms and types of pain you experience?  I'd be interested to hear about it ... or if you could direct me to previous message threads you've participated in concerning it.   smilewinkgrin  
Also ... have you ever read or heard that the "face pain" and associated symptoms can also be an indicator of MS?  I was just doing some reading yesterday that said though it isn't typical in MS ... those who experience it as one of their first and main symptoms are very often later found to have MS, especially if they are a female between the ages of 20 and 40 at onset.  Not wanting to sound any alarms that aren't already going off in your minds as you work with your doctors ... but it may be worth looking into.  I'll see if I can go back and find the link for you to read for yourselves.
I've just found that the more quickly someone gets help ... helpful help, that is ... the more quickly and more likely they are to recover ... if it's in the cards for them.  The longer the road to proper diagnosis and treatment seems to also mean the less likely someone is to fully regain what it is they have lost to their illness.
Love and blessings ~*~ Karen  turn free2bfree

Regular Member

Date Joined May 2009
Total Posts : 138
   Posted 8/28/2009 2:07 PM (GMT -6)   
i just wanted to say i read your post, obviously. i have never heard of your disorder but i do understand pain. the only similar souding pain that i know of is temporomandibular joint syndrome. what you have sounds much worse than that. i wanted you to know that i care and will be thinking about you. i wish for you relief from your pain and a solid diagnosis.
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