I know a few other members on here feel that TN is stress related, and sometimes I wonder the same thing. My mother is very reluctant on taking me to the hospital because of how much I've been there, but for the same thing. She thinks eventually they'll discontinue seeing me and then I'm basically screwed.
Anyway, I've passed about 6-10 kidney stones this past year alone and I think I'm passing a fairly large one right now. I'm scared that if I stress too much about the pain, that my TN will be triggered and then I'm equally screwed. I feel as though everyone thinks I'm making my pain up and it makes me feel so many negative things that I just let it consume me. All I want to do is sleep and eat and I've had some horrifying thoughts. Some days I just want to be so sedated to the point that I don't want to feel anything for a while, and some days I just want cry until I can't anymore.
I know I've fallen into a depression. I know i have horrible anxiety because of my pain. I just don't know how to be pain free or at least close to it if I have no way to the hospital or the fact my neurologist and PCP don't really believe in narcotics or have the ability to prescribe them. I'm not even sure if I can call a pain management doctor behind their backs without a referral.
I'm sorry for the ramble. I've been up since 5. I can't really seem to get myself together here. I guess the only thing to do is wait for the stone to pass and pray my TN doesn't act up.
Someone please tell me it gets better? I guess I just need some friendly consoling from those who know what this is like and can relate.
Taylor, first off huge ((((( hugs )))))!
I personally don’t think TN is stress related, only because I’ve been through several extremely stressful periods in my life with NO TN, even during my remission of it. I DO believe that stress can make it worse! So it is very important despite everything to try and eliminate as much stress from our lives. ( easier said than done)
The most important lesson I’ve learned from TN as it can be such an invisible disease, is too not worry about what other people think! I know when I’m in pain, I know what it’s like to live, suffer with it, and that’s all that matters!!
No one should have to be in pain, so we should all do whatever it takes to minimize our suffering.
That being said, you must confront your doctors (or find new ones) and find pain relief ASAP!
If you need to go to hospital ask a friend to take you or take a cab!
Be gentle with yourself and do what’s best for you!
I’m not sure how things work where you live, ( I’m from Canada ) but hopefully someone will come along that can help you maybe find a support system nearby, or a new team of doctors!
I’m thinking of you and wishing you some peace and relief of pain today!!
Mimi
Dear Taylor, i completely agree with Mimi! Be kind and gentle with yourself, love yourself as never before. You are your very best advocate, keep telling your caregivers that need help. Every day wont be so hard and we can live very high quality lives. Sending hugs and positive energy, Sara
I have to say that on a personal level, extreme stress has seemed to go hand in hand with a bad TN pain jag. But I have had stress without TN go figure because I am stuffed if I can!
I really feel for you, there seems a lot of tough stuff for you to endure just now. Big breaths (if poss!) and try to be as calm as you can, concentrate on breathing in then breathing out with a picture in your mind of your very favourite thing/person/place. I swim in an aqua bay, bliss. It may not make the pain better but it will help you.
Invisible illnesses are always tough for gaining sympathy, that is why we are here, for warm caring support.
You are entitled to have your pain treated adequately. You can ask and expect these doctors to give you a referral to pain management. The difference in pain management is unbelievable. There are many many good ones that will and can offer you procedures and opiates if you need them. If you live in a state where medical marijuana is legal that gives you another option as well and you don't need to tell your other docs about it.
There is a pain patient's bill of rights. Here it is: People living with chronic pain are often “people pleasers,” according to the American Chronic Pain Association. That means they may dismiss their own needs to assist others, or be hesitant to express their needs and ask that they be met.
One of the key steps to finding relief and living well is to know your needs and limits and have people meet and respect them. The ACPA acknowledges 15 basic rights to which every pain patient is entitled.
As a person suffering from chronic pain, you have a right to:
Act in a way that promotes dignity and self-respect.
Be treated with respect.
Make mistakes.
Do less than you are humanly capable of doing.
Change your mind.
Ask for what you want.
Take time to slow down and think before you act.
Ask for information.
Ask for help or assistance.
Feel good about yourself.
Disagree.
Not have to explain everything you do and think.
Say "no" and not feel guilty.
Ask why.
Be listened to and taken seriously when expressing your feelings.
I am so sorry that you are hurting. This is a horrid nightmare of a condition. Please ask your doctor for antidepressants to help you handle it and a referral to pain mgmt. If he/she refuses then tell them you have a right to have your pain addressed and give them a full description of the pain you are feeling. Try and give it to them on a pain scale, such as how long it was a ten, how long it lasts, etc. If your GP or neuro won't help you find another GP and get serious. Call a pain management doc yourself if you have to and make an appt even if you have to pay cash. It isn't going to cost you more than $100 and it might end up being the best $100 you have ever spent!
Hey Taylor! I feel for you as I remember those days. I have been sedated to the point of feeling nothing when the last straw for pain relief for me was morphine and it is no way to live. Please talk to a neurosurgeon about an MVD. It is the best thing I ever did. If I had known the relief it would bring, I would not have suffered for four years. Don't get me wrong, an MVD is a big decision but I cannot tell you how life changing it was for me.
Just remember that each day brings new things and that is OK to feel down. What we have is so crazy.
Stress is indeed a factor for me and alot of other peeps here. The ones that aren't affected...I am so very jealous! :)
I understand where you are coming from; I too have bouts of depressive times - the days of relentless pain and then outside factors (stress) that simply make your 'chest feel like it is jumping out of your body' is almost too much...BUT... please read and then re-read what Julie said...THEN...go onto the link in 'face pain info' to KNOW YOU ARE NOT ALONE with feeling like crying all day! It also gives more info you may find helpful.
Please KNOW you are NEVER alone, we are here and we UNDERSTAND what you are feeling and what you are going through! DO NOT stop until you get someone to help get you the relief you so desperately need!
oh baby you are so not alone! We are here for you! I understand your struggle with anxiety and depression. You never know when the monster might get you and make you hurt like hell! I have just recently started pain management and am having to wrap my head around it. Nobody wanted to grow up and be like this. I hope you have some friends to talk to if not you have me. It is so hard to be strong but I know you can do it. I have just recently been given narcotics reluctently by neurosurgeon and referred to pain management b /c I am no longer a surgical candidate. Have had the monster for 6 years, WE WILL GET OUR LIFE BACK! I pray for your comfort and peace. Love from Alabama, yaya
