<sigh> I disenrolled from LWTN, even though I was a charter member, after a vicious attack for not acting like I suffered like the rest. After a two year break, I came back under another name. For the record, I DO NOT feel attacked in this thread, but it has made me both sad, and both uncomfortable based on past group experience. Woman with the electric teeth directed her comment at me, and honestly, I did not have any issues with her comment. I respect in having 19 years of having to deal with TN, I have had a lot more time to come to terms with certain issues. It took me 3 years to accept the pain, and start to find my new "reality" I have wanted to jump off a 12 story bridge, locked myself in my room, until the urge to swallow all the pills I had passed. I have had such horrific episodes, I flopped on my bed, like a fish out of water. When this happened, I would so tightly grip a special scarf, that my hand would ache for days afterwards. As my first MVD happened at the Portland, Oregon Veteran's Hospital, if nothing showed up on the MRI, the surgery would have been denied. Talk about massive fear when waiting for the MRI results. I have gone through 3 massive relapses, and am not doing well now, but am thinking it is due to the heat, and am striving to be patient. Let's attack the disease, not each other.
I wish this site had a like button like FB!
Obsidian said:
Thank you for this post. Giving to others being a source of healing - beautiful.
HMB said:I am not one to post or share my thoughts that often. But the initial discussion and TheHoward" on "Howard" reply pushed my button. I think it was gracefully and compassionately put to rest by Dr. Red who I personally respect and thank God for. I am not writing to raise the matter again but to thank "Red", fellow sufferers and the association for their responses and being part of my "survival" family. I am just on a 2 day relief cycle from 8 weeks of not eating, surviving on protein shakes, 24/7 pain at 10+ and hardly being able to talk or think clearly. (Sounds familiar, right). My ATN, now almost 7 years after diagnosis, has now decided to mimic TN and stay with me constantly. I endure because of my family and friends support and my newly found extended family all of my fellow members. My ENT doctor, my acupuncturist and my basic stubbornness and refusal to let my disease win has finally given me 2 days off, (my meds stopped working months ago although at the max level). I was thankful for one night's sleep and an hour of pain less than 10. I am thankful for the solid food I will eat tonight no matter how much it hurts, burns and so on and even if tomorrow I go back to my new normal. The reason is simple for me an almost 65 year old man or person. It goes back to what my Grandparents said to me over and over again more than 60 years ago. "I cried cause I had no shoes until I met a man who had no feet." All of my initial heroes in life have passed on (grandparents, parents, Mickey Mantle and etc.) but I am blessed to still be breathing and able to see my wife, my sons and my friends even on my bad days. They support me as I have done for them over our many years together. I spend my good days giving two of my best friends love and support as they face their final days with stage 4 terminal colon cancer and kidney disease, stroke and heart failure that is irreversible. One leaves in an almost vegetative state just coming out of a coma and basically living to get dialysis (he cannot talk or walk). His wife is one of my heroes, she survived a double mastectomy and had had to put her reconstruction surgery on hold to be his caregiver. My other heroes are our men and women who serve or served our country. I am a second generation member of that group. I'm rambling and apologize. Taking advantage of my day of "sanity" (Lol, did I say maintaining your humor helps). My heroes are the children born with debilitating diseases who have to struggle everyday of their lives since childhood, but manage to smile, work, go to school and give love. I pray that those survivors encourage you not to give up. My best remedy, (besides listening to classic rock with the headphones on at a deafening levels), is to do something for someone else. Listen to a youth in trouble, go to a hospital for our VETs and say hello and thank them, basically find a way to reach out beyond our own misery. I believe and my family and myself fought for freedom of speech. So Howard I support your right of freedom of speech and thought. I hope you feel better today. But I believe your comments went beyond that and were destructive and contrary to the Association's goals and purpose. The casting of dispersions on professionals who our helping our quest for relief and attacking our fellow victims stretches beyond that freedom. Venting and sharing your pain and frustration is expected and therapeutic, the other is selfish, mean spirited and "misery likes company" behavior. Think before you post or write. This site is to help us cope not for dumping your misery on others, we already have our own to endure. It is my opinion that you should exercise your "freedom and freedom of speech," by simply changing the channel. Dr. Casey's video and "Red"'s discussions helped me and many others. If they didn't help you personally that's just like the meds that help some and not others. If they only helped one of our fellow victims they are useful. I understand your frustration and negativism. I work out; (yes it hurts but it is a necessity, if I didn't I would lose the use of my right arm and shoulder due to recent injury and surgery) teach martial arts (for free) to youth with disabilities, meditate and go out to celebrate life when I can. I do this not only to vent my anger and to give myself strength but to find a way to thank my friends and family who have supported me during times "when just being alive hurts." Giving to others is a great healing source, you forget about yourself for a while and actually "live again." When it's my time to move on to the next world I want my legacy to be that "he cared, he helped others, he showed us what strength and dignity was about and he loved no matter what pain he was in." I am spiritual and not a believer in organized religion but I pray for others never myself. I pray for you to find something positive to contribute to "us" and others, our true remedy is in the hands of God, but our works will allow us to receive that remedy whenever it comes. HMB (Over and Out)
Howard, do a little digging into channelopathy and pain. You might find this line of inquiry fruitful.
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It will help to know a little about ion channels and action potentials in neurons and you can easily learn about this at Kahn Academy, excellent tutorials.
I am being sent to a researcher/clinician at UBC to check in this direction.
More later, must turn the light out. I learned something today about my grandmotherâs illness that blew my socks off.
Keep Heart
Bellalarke
thehoward said:
This is really quite astounding.
1. I was diagnosed with fibromyalgia first, well before 1995, and learned to roll with it more or less. Xanax and Elavil teamed to make my body pain less awful than my face pain.
2. I took to calling my face pain âfibromyalgia of the face.â
3. I do not think that my face pain is like my body pain. Because I never had piercing pain, I have not to this day taken an MRI, or been asked to take one. So no compressions that I am aware of.
4. I have always thought it was linked to a virus. My doctor did diagnose me with âactive Epstein-Barr, though never called it the cause of my pain. Up until recently I have suffered through days- and weeks-long periods of feeling chilled, as if I had a temperature, and general malaise. I donât know why this burden was lifted, but I just hope I havenât jinxed myself.
5. My father died when I was 3 (on my birthday!), and my mother couldnât keep it together: threatened suicide my whole childhood. Is that enough to cause stress? You bet. Is that enough to cause a pain condition later in life? Who the hell knows?
6, Back story: my grandmother, who lived with us until she died when I was 12, was always complaining and my mother took her to clinics regularly where they would never find anything. My grandmother spoke little English, so I never even knew what it was she was complaining about. She sat in the living room chair all day talking to herself in Yiddish. I am embarrassed to admit I was not kind to her. I canât recall if the poor woman ever smiled.
7. âKeep moving no matter whatâ is what I tell other people to do â and what I do when I am not being self-defeating. It amazes me that I know how much exercising, going to the supermarket, doing household chores, forestalls the onset of the dayâs worst pain, and yet I still spend some days curled up. We/I still need the encouragement. Especially late at night, as I write this, as I can feel the pain building, and fight to remain mentally focused on what I want to type (my typing is a mess, so I edit a lot). There is a show I taped and a book Iâm in the middle of, if, as is likely nowadays, I canât get to sleep.
It should be remembered, however, there are people who have not yet found drug(s) that do anything to relieve the pain, so for them it is perhaps too easy to say, get up. Just get up. Those people have to keep trying to find better meds (and better doctors), whatever those meds might connote.
But you need not apologize for rambling. You need to give this advice over and over again.
Bellalarke said:Just jumping in here with random thoughts and they may come out convoluted but I'm going to take a stab...
I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada...all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.
The first neurologist I went to said it was fibro "gone to my head"... Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.
So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.
In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it's possibly been a virus all along and that it's neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS...but he has committed to finding a REAL diagnosis.
He did spend about 2 minutes in our hour and a half asking the routine "did you suffer really terrible childhood abuse" but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.
Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don't believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was "keep moving no matter what". This was sound advice and I was thinking a lot about that during recovery from MVD.
I decided to get back up and straighten up no matter what. I keep a watch on my posture. I'm not going back "down" again. In this regard it doesn't matter what my disease is called. While I'm waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.
I need little accomplishments every day. And I need not to think about this all the time. It's one thing to keep up with the latest research but it's another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.
I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings...mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings...whole beings. We need to follow all the leads. And we need to act as whole beings.
I'm glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.
So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.
So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.
Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds...because then I can focus on something else, and do a little something, and that is a pain reliever in itself.
I hope there is a shred of clarity in my ramble and that I am not totally off base here.
Keep Heart
Bellalarke
Because a member has left the group because of being attacked through this thread, I am now closing it. Please remember folks, be KIND to each other, show a bit more compassion. And to those that do, Thank you from the bottom of my heart.
I am replying to this thread & know it is OLD. Itâs a lot to read so I breezed through it. Just wanted to comment on ATN.
When you have a procedure done inside your mouth then comes pain how can anyone say itâs in your head? Itâs frustrating bc not everything shows on an X-ray right away if there is erosion of the bone or infection with a tooth. Certain dental X-rays only see so much angle with the X-ray so it may appear to be fine but you may have a dental infection. If itâs nerve damage it may not show on X-ray etc. I think itâs BS when drs make you feel like itâs all in your head just bc they do not know whatâs wrong.
Welcome to my world. If I could go back 4 years ago I would not have done some of the dental/sinus procedures. I think itâs ok to say hey yes something is going on but itâs not clear what.
In my experience - drs only know what they experience so far in their career. When you deal with the face which is complex, you get passed around. In my case ENT, dental, tmj, neurologist etc.
Answers DO exist. I believe that. Itâs just hard to find bc again if itâs not showing on an X-ray then itâs harder to say for sure what exactly it is. Also- we get xrayed and things get missed on xrays. Not every radiologist reads it correctly.
I want answers. I hate not knowing. All of my stuff is left sided. I am tired of spending money on dr visits and some drs these days rush you & donât really listen. I believe there is a source of our pain. ATN just means to me the drs havenât figured out the source. I will be damned if itâs psychological. Believe me. 10 days after a upper tooth extraction I developed throbbing pain above the extraction site. Itâs not in my head. Itâs been 2 years since extraction. Several dental cone beam scans and nothing is showing up. Then thereâs my lower left jaw same side & I feel it under my jaw and mental nerve or lymph nodes. No freaking answers.
Not in my head. Thereâs a source. I just need to find it.
100 % the same
Hi Lala1234 how are you coping?
Hi. Dealing with ent & dental drs still & many other drs. So - itâs still all crazy. Not all of my issues are nerve. Itâs just a long frustrating process.
Thanks for asking!
I understand. It is all so frustrating.