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I'm so scared, complete pity post

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Posted 9/20/2009 4:44 PM (GMT 0)
This is about trigeminal neuralgia. I am scared of the pain.

I have been very fortunate that my fibro isn't out of control, that I can manage the day-to-day pain usually, with only a few really bad days where I can't move. I realize that many of you suffer much worse on a daily basis. I don't know if I can handle extreme pain, or how to cope.

I am trying not to get ahead of myself, that I may not have it. Or if I do, it, like my fibro, may not be as severe. But everyday that passes I get more and more pain, more and more activity in my face, more and more like the 'classic' electric shocks of TN.

I haven't had any more of those severe attacks like a few weeks ago. But from what I have read, as the disease progresses, the remissions get shorter and the pain intensifies. My severe attacks lasted at the most 30 minutes. I read posts in another forum where people have had to go to the hospital to get a nerve block for relief after 5 hours of severe pain. My electric shocks have definitely worsened. What used to be a superficial feeling of tiny cuts on my skin is now deeper, stronger, and electrical. I used to have it only on the right cheek. This week the left started, and over my right eye. Last night at work, I got a stronger than usual jab over the eye that made me double over and cry out. Luckily I was in the back, and only my coworkers gave me weird looks. What will I do if it happens in the front of the house? I'm a waitress, and I can just see me get a zap as I get to a table and drop the plates.

I tried to talk to dh about my fears. As supportive as he usually is, I didn't even get a hug that night. He has seen me during those bad attacks, and I think he is as scared as I am. He has no idea what to say to me.

This phrase popped in my head, "I can only see a life of pain ahead of me, and strong drugs that dull my senses."
Then I thought, what right have I to complain? This phrase above I have read on this forum more than once. What would make me an exception? Why is this any different?

I do remember my fibro being worse at the beginning until I learned to cope and accept it. Now I take it one day at a time and enjoy my good days, don't dwell on the bad. I suppose this will be the same. Our bodies are resilient, and I am surprised at what we can handle. But how can I handle this pain every day? My face hurts every single day. Sometimes it starts to intensify, and I get scared that this is it, this one will bring me to my knees. Then it goes back in the background, with the occasional zap to say, "Don't forget, I am still here!" How do I even begin to cope with this?

I am sorry to have to depend on you, dear friends again. I am sorry that I can't seem to find the strength for this. I am scared. I am confused. I want to be strong, but I feel weak.
Posted 9/20/2009 8:19 PM (GMT 0)
((((((mamanan)))))) i'm so sorry to hear of your fear and worry. i went through a year and a half of almost constant migraines, which was so awful i could hardly stand it.

you don't have to handle this pain every day. you only have to handle it one day at a time, as you said. don't project, don't catastrophize.

i'm sure you're right that your husband is scared too. mine was. but we got through it and so will you. you may indeed have a life of pain ahead of you, but you will learn as i did that you can have a full and wonderful life even in pain. yes, i felt sorry for myself sometimes, still do. yes, i was terrified sometimes, still am. you are allowed to have your feelings and the best thing you can do is to share them here. "trouble shared is trouble halved, joy shared is joy doubled."

you may feel weak, but anyone who has lived with fibro is way stronger than the rest of world. hang in there and don't give up five minutes before the miracle.

beanley
Posted 9/20/2009 8:47 PM (GMT 0)
Mamanan, have you been diagnosed with TN or are you trying to find out what is going on by reading the Internet?  If that's what you are doing, please stop and go see your doctor or dentist.  It could be TMJ.

 

I have a doctorate degree in frightening myself witless!  When I suffered badly from anxiety I could conger up the worst possible things in my mind and my body was ready to cooperate!  I had a home medical book and I would sit there and read it.  My body started taking on the symptoms of what I was reading...honestly!  I can't tell you how many times I thought I was dying.  Anxiety can do this.  Your nervous system and mind can produce these symptoms if you are worried about them and know what to look for.  That's why I say to see a doctor or dentist.  Let them rule out things instead of worrying yourself like this.

I hope you don't have TN.  But. I do know what the human spirit can put up with.  Whatever is causing this pain needs to be identified so that you can get the right help.  Once you know who the "enemy" is, you can plan your attack.  That's what you have done with fibro.  You recognize it and have learned ways of working around it and your life is moving forward.  You will do this with whatever is causing your pain, too.  So, please see a doctor, if you haven't already.  I'm praying that you will find an easy solution.

 

Sherrine    

Posted 9/20/2009 9:50 PM (GMT 0)
aah, Beanly, I can't imagine having migraines! I had them on a few occasions. I always said a headache is the one pain I can not tolerate. Your post gave me hope. I especially love your last quote, "don't give up 5 minutes before the miracle." Thank you (((hugs)))

(((Sherrine))) Do you realize what an impact you have had on me? Last year, when I was frightened of having MS, then the fibro pain hit me. The only thing I could think of then was I would rather have anything but a life of this! And I remember one post I made, where I was having a particularly bad day. I sat, thinking I needed to go to the garden and weed, but even thinking about it made me tired. Then Jev (?) called me 'dear lady' and gave me back my dignity. And you told me instead of looking at the weeds and feeling sorry for myself and what I couldn't do, enjoy my flowers and the beauty that was around me and what I could accomplish. You gave me a different way to look at my world, and hope to change it. This year I made a new bed, and started having plans for another next spring. My front yard will soon look like what I envisioned when we first bought the house. And each time I work in there, I think of you. You, Jeannie and Marlee are my three muskateers!

I know what anxiety can do. Last year I saw it with my MS scare. Now I am seeing it again with MS, as TN can be a symptom of it. This doesn't come out of the blue, as MS runs in my family. I also recognized anxiety with my toxic body after the GI bleed a few weeks ago, my rotten jaw bone, liver cirrhosis, throat problems, and who knows what else. (for those who haven't read my posts, this IS all in my head ;) ) I have stopped looking at the internet, and am trying to be patient and letting the doctors do their thing. Hard to do when my MRI isn't booked until end of November.

But Sherrine, I am losing faith in God, and so hope for beauty and peace in life. How could there be a God when I lost my FIL, who was more like a father to me this year? When He took away a 7 y/o boy after he was finally reunited with his Grandmother from foster homes? When He lets pain and suffering be a part of our world? I am scared and feel so lost. Maybe a talk with my priest is in order. I know this isn't the place for a theological discussion.

I am terrified of getting my tooth pulled in a few weeks, and in a way excited too. I have been hoping all this time that maybe this nerve pain does come from the trigeminal nerve being irritated from that bad cavity. But now the zaps are on the other side too, where I don't believe I have any tooth problems. And I do have a lot of anxiety of getting the procedure done, as it can set off a TN attack. You are right, NEVER look at the internet! I have also had cutting sensations in my cheek set off from a breeze for over a year. They are just now getting worse. This never really hurt badly, so I thought it was a neat parlour trick, you know? But TN can be set off from a breeze.

I may not be dx with TN after all. My anxiety is trying to get the MS factor back in. But I know that my symptoms are getting worse, and not from self diagnosis. I know that my children have seen me in so much pain that I was unable to talk. I know that the pain is spreading fast. I do not know if I am strong enough to deal with it. It's the one thing I don't know, and I am scared.

And I do know that I have the support of this group to help me get though it. (((gentle hugs)))
Posted 9/20/2009 10:05 PM (GMT 0)

Mamanan, why don't you email me.  My address is in my profile.

Sherrine

Posted 9/21/2009 12:31 AM (GMT 0)
Mamanan, I am so sorry that you are worried that you might have TN. The unknown is always
scary and adds stress to the situation. I can relate. The mind is such a powerful thing, it can
conjure up the worst scenario and horrify us. I have had this happen to me countless times, it
can be frightening. I figure if my mind can create such chaos, it should be able to make me
feel calm too. Whenever the anxiety starts creeping in, I tell myself it will be ok, I can handle it.
I repeat this over and over. My anxiety has lessoned. It took me years to accept the fact
that there are things that are out of my control, the only thing I can control is how I react to
the situation. When the load gets too heavy let God help you carry it. He is always there.

Mamanan, I believe you are a very strong woman and hope you believe it too. I am keeping
uou in my prayers and sending gentle hugs.

Robin
Posted 9/21/2009 3:10 AM (GMT 0)
Sherrine, check your email. It took so long to answer as I had to get the kids baths and in bed. Dh is away for 4 days on business, then home for 3 before he goes again for another 4. It never rains but it pours.

Robin, thank you so much for your post. I really respect you and I think YOU are an incredibly strong person I wish I could emulate. I can handle it, uh? I'll give it a try. (((HUGS)))
Posted 9/21/2009 3:54 AM (GMT 0)
Sherrine,

I got my email back with this message:
'your addy': smtp;450 Recipient Rejected: Too many unknown recipients, please clean up your list

Is this at my end or yours?
Posted 9/21/2009 2:59 PM (GMT 0)
Sending soft hugs, Mamanan.  I think we've all been there in one form or another, fearing our multiple illnesses, pain, uncertainty, and the future.  We do understand and care here.

 

Try to take one minute at a time; one day at a time often seems like too much, but one minute at a time is manageable.  Take a deep breath and try to focus on just the here and now and not worry about what will happen tomorrow.  It might be a good idea to talk to your priest, as you mentioned.  Maybe he can help you get some emotional relief.  God is a big God.  He can handle your fears, uncertainty, anger, and doubt.

 

One of my favorite quotes by Mark Twain: "I am an old man and have known a great many troubles, but most of them never happened."  This quote probably helps me cope about as well as anything.  It really helps me not to be anxious about what might happen.

 

Just a personal experience:  I have TMJ and thought that I was having a horrible flare recently.  I had the same problem last Christmas.  It turns out the the recurring awful pain in my jaw, ear, head, neck, and mouth was from a tooth that needed a root canal.  I had the root canal, and the pain "mysteriously" went away.  Since I do have TMJ problems, I would have sworn on my life that it was causing the pain, but it did turn out to be a tooth problem.

 

I think it is often really difficult to pinpoint the cause of head, mouth, and neck pain.  Hopefully, you will be able to get a good diagnosis and treatment.

 

Soft hugs - Austen

 

 

Posted 9/21/2009 3:36 PM (GMT 0)
Try sending it again.  I'm having computer problems so it could be me, but I've been getting my email. 

 

Sherrine

Posted 9/21/2009 4:08 PM (GMT 0)

When I don't have answers and feel most out of control, I'll go on, what become exhaustive and obsessive online searches for diagnoses. It pretty much always produces more anxiety, inevitabley causing my symptoms to worsen. The fact that I don't have a lot of trust in most doctors only makes it tougher. What Sherrine said about "her anxiety congering up the worst possible things in her mind and her body being ready to cooperate" really hit home for me. It helps so much to see that I'm not the only one that's done this.

((((Mamanan)))), I send you warm hugs and thoughts for calming relief from the anxiety and pain. The answers will come. Wow, do I ever understand feeling a loss of faith. It sometimes helps me when I think of the human experience as being like "school".  Every bit of what we see as suffering and joy, for that matter, is part of the curriculum.

Posted 9/21/2009 5:40 PM (GMT 0)
Sherrine, I resent :)

Austen and Rachel, thank you so much for your replies. I keep writing encouragements down in my notebook, so when I get too stressed out, I can look at these uplifting words and take heart. I just need to take things as they come and be patient. But it's HARD!!!! You all make it so much easier.

Thank you, from the bottom of my heart, to all of you.
(((((((HUGS)))))))
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