[25yrsnstillfighting]

There seems to be no end to this it just keeps getting worse. Nothing is working. I hope anyone here that finds a solution that Dr's do not have please help. There is no research nor do they intend to do any. This issue needs addressing. Being called a mental patient because of chronic pain seems to be the theme. When you have lost your family and are fighting the entire system with this pain the choices and options are few. They make everything so difficult. The VA is horrendous. Mr Neurosurgeon won't even operate because I could become paraylzed. There is no place left to turn. Drugs just mask the pain and alter the thought process. I hope someone here finds the answer to neurological degeneration and TOS along with fibromyalgia. Pain never ending pain. Anyone with any help? In NYS there are few and most won't take the insurance. Please don't allow yourself to be put in this corner and always get second and third opinions. This is slow painful way of going. Anyone?

[25yrsnstillfighting]

I guess i really am alone in this battle. there is only One Rule. Trust nothing and suspect everything.

[Jomar]

Unfortunately during the holidays replies are slower...

[Keckie]

Hi, I am currently in the midst of my own crisis and trying to discover what is going on. I can completely understand how you feel isolated and alone. Its so hard to keep positive but I do find distraction is working a little for me. I have been to sooo many appointments and everyone has a different opinion on my situation. I wish you well, is there any in person support groups around you?

Goodluck! One step at a time but keep going.!

[Strhuntrss]

To everyone who has lost hope,

When all else fails, people fail you, when you yourself has failed you and all hope is gone.

I go back to my faith in God. He has been through far worse than I. So in my faith and belief, I consider that maybe this is a test of my endurance, my strengths and my weaknesses.

Then I hang my head and pray to the very man, yes man, he was one of us, that gave me life with the help of my Mom and Dad. I remember all my trials and triumphs when I was growing up. They seemed to have worked out. Maybe to not to my liking, but to His.

What I have been through has made me stronger and more resilient.
Yes, Didn't always get what I wanted, but got what I needed.

So. As this New Year has come to be, I will tap into the old me, the one who got through and is still here. Unscathed but with a few wrinkles, a few scars, I will tap into the strength of my faith and my God. For he hasn't forsaken me yet. Not shall he. I just have to be a little more patient with myself, take what I can take and leave the rest up to him.

That is what I am going to do in this New Year.

What are you going to do? How are you going to find your strength?

What ever works for you . . . Just know that WE are here for you, to listen, to cry, to pray with you!

We can be here for each other in one capacity or another.

Know you are loved!

God Bless you in 2015!

[EnglishDave]

Originally Posted by Strhuntrss

To everyone who has lost hope…

What are you going to do? How are you going to find your strength?

:

I believe in the works and teachings of Lord Jesus, the man.
I believe in, and follow the philosophies and teachings of Buddha.
I strive to be positive.
I give freely what I can.
I meditate when my mind and body allows.
I draw strength from fellow Forum members.

Dave

[Daesin]

I hope someone here finds the answer to neurological degeneration and TOS along with fibromyalgia. Pain never ending pain. Anyone with any help?
***********************************
I am sorry that I don't have the answer....trust me I would jump on it and dig in myself if it were here on this end. I do understand your TOS pain. I am spending yet another night in my room crying so I don't overwhelm my family. I couldn't even fold a load of clothes without muscle spasms and shots of fire.

TOS has taken over my life in a most horrible way. I believe you can understand that comment more than even my dr does. It sucks the big one. Some folks suggested using your religious faith for support. I hope you try that if that is an option for you.

The only relief I have yet to find was an inter-scalene block when they did an unnecessary procedure for a wrong diagnosis. Sound familiar? Meds make me stupid or they do things they shouldn't in my system. I wish everyday, a thousand times that I had simply broken my arm, or even cut it off instead of this horror.

I will make you a deal, if you figure something out tell me and I promise to do the same. Until then we can only hope.

[EnglishDave]

Hi Daesin,
My Philosophical Beliefs are complex and meditation is just a part of my pain management regimen. With the spinal injuries, total Neurological Hypersensitivity, Allodynia, referred pain from my neck to my arms, Trigeminal Parathesia, etc I am bouncing around a 10 on a pain scale of 1-10. Add in Chronic TN AND Chronic Cluster Headaches and I'm up to 12-15.
I RELY on my Pain Management Team, and the meds they provide. The most effective I have mentioned often elsewhere - Lidocaine Infusions every 4 weeks and oral Ketamine 4 times a day. Ketamine and Phenytoin Infusions are also available. These 2 treatments (combined with opiates) take my pain down to 6-7 and are literal life savers.
Meditation helps me cope with the pain and Depression, and clears and strengthens my mind.
I hope this gives you options to discuss with your Doctor.

Dave.

[Daesin]

Wow Dave,
It sounds like you keep a whole slew of pain professionals working. I am so sorry. I really hope someone can help relieve some of those issues and help improve your quality of life.
Meditation has been a blessing. I currently do not take opiods. They simply don't help with nerve issues. Plus my chemistry is really off so meds don't have the desired result.
My dr is confused, so he is sending me in March to a specialist. I really hope they are able to come up with something. This past year has really sucked any joy out of my life.
I do appreciate your response. I hope it wasn't written while you were laid out on the floor. That story really effected me. Silly to say but I wanted to reach through the screen and help somehow.
I am gleaning all of the info I can so that I can have an informed conversation with this new dr. So, thank you for the input.
Best of luck to you.

[EnglishDave]

Daesin,
Having read through my post again it comes across as a bit terse and snappy, I did not intend that - 3 Cluster Attack day - and I apologise.
Thank you for your concern, I was (and am) actually propped up on my side with my left hand covering my left eye to counteract the double vision caused by a brain lesion…
Anyway, Lidocaine Infusions and Ketamine, remember these for discussion with your new Dr. Both are anaesthetics and have been shown to work well on severe, chronic neurological pain. They even dull down the trigeminal parasthesia I constantly suffer, which can only be described as the 'pins and needles' pain you get in your arm when you lay on it wrong - and the feeling is just coming back. Try explaining to your Neuro that it covers the left side of your face, and when it gets into your nose you want to rip it off and shake it around to get the feeling back - and not sound insane!
I hope your new Dr finds an answer for you, your story shows that one step can change our world.

Dave.