Chronic Pain members - Welcome, please introduce yourself

@joelhoward1092
i’m praying for you! Where do they implant it?
nerve pain is the worst. For me it causes muscular problems as well, but the severe pain is unremitting. It makes me feel crazy because I feel sensations when there’s nothing going on, nothing is consistent, it’s worse at night, but then I have a sense of something crawling on my skin, and I can’t tell if I’m drooling or not. Our nerves are really getting on our nerves! Hugs and prayers!

@cyndigarrison thank you for your honesty and telling us the fact that even a doctor can get FM. I have had it for 40 years that I was diagnosed but believe I may even have had it when I was a child. My mother wouldn't listen to talk of pain or other side effects so I was expected to endure. Now my son had to face that chronic pain is different than acute pain because I am now going to a home. He will have to help me move and talked to his sister last night to see if there was anything else for me to do. I think now that instead of not wanting to help me, he didn't want to believe his mother was so ill. I too have not had a social life for years and feel blessed when my grandchildren visit.

@enmerzergmailcom Thank you! The device is actually placed under your skin just above your hip. That is the controller. The leads are connected to the controller and then they are placed inside the spinal column. The level they are placed at depends on where your pain is. In theory it should be able to affect the pain anywhere below the level where the leads have been placed. It is supposed to block the pain signals before they reach the brain. A lot of people have great success with them, so far I am not one of them!

BTW - I get that same feeling like something is crawling on my legs. Especially at night and in the morning.

Hello my name is Denise and I've been in chronic pain most of my life. I've had 3 cervical spine surgeries, 3 Lumbar spine surgeries and many injections to try to improve my pain. I've tried many medications, most causing uncomfortable side effects. My quality of life is very low and my functionality is bad, I've become a shell of a person watching life pass me by. I need fresh eyes and ideas from doctors to ease my pain which is mostly lower back and legs.

@joelhoward1092 I feel like I’m crazy. I don’t know what’s real and what’s in my head, I mean, what’s in my nervous system firing incorrectly. My left eye is worse than my right, and the whole left side of your body. I can’t stay balanced anymore. It’s also affecting my breathing, bladder… I’ve been checked for transverse, myelitis, and myasthenia gravis. I don’t ever expect anything to show up on test, I just don’t know how to live with it. I burn my hands and cut them frequently because they just flop around. Do you have any of that uncontrollable limbs? I’m sorry to write such a long thing, my neurologist is cutting back, and the pain doctor said there’s nothing else to be done, since I did the low-dose naltrexone. She said I can’t do Ketamine…
I walked out of her office last Wednesday after she said she had nothing else for me! as a clinical psychologist, I tell a patient if I don’t think I can treat them and I refer them appropriately. It’s bizarre that she just said there’s nothing else.

@enmerzergmailcom That is crazy. Sorry you have to deal with that. I am not sure where you live, but you may need to consider going to a metropolitan area with more options for treatment.

I am curious, did you receive any benefit from the LDN?

I'm from the UK. Someone I love and for whom I'm carer is in chronic pain from degeneration of the spinal cord. They are refused opioids and pressured into going onto Lyrica. The bladder became retentive, so they are not willing to carry on with it. They are in awful pain. Now I read about the statistical link with dementia. It's very worrying that so many people are prescribed this.
Also worrying is the opioid refusal. Doctors are not treating pain any more.

Hello Denise @dpiselli, Welcome to Connect. I can't imagine dealing with the chronic pain as long as you have. It has to be pretty awful. I know you are not alone and hopefully can connect with other members to learn what has helped them manage the pain. While you wait for members to respond, I did a search of Connect for "chronic pain and spinal surgeries" and thought you might like to scan through the different discussions and comments to see if there may be something you haven't tried - https://connect.mayoclinic.org/search/?search=chronic+pain+and+spinal+surgeries+.

Have you considered a pain rehabilitation center? Here are a couple of newsfeed posts that have more information:
-- What is the Pain Rehabilitation Center?: https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/newsfeed-post/what-is-the-prc/
-- Is the Pain Rehabilitation Center right for you?: https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/newsfeed-post/is-the-pain-rehabilitation-center-right-for-you/

@joelhoward1092

I’m in Boston, the medical make up of the US. I went to a specialist at the Massachusetts general hospital, which claims to be one of the best in the world, Saudi princes come here, children from all over the world with cancer come to Mass general,. it is connected to Harvard Medical School. I also went to a major hospital in New York City. No one could help. The LDN was fine at 1.5, but then I went up to 3.0 and I had bad side effects. I saw the pain specialist and she said she wouldn’t prescribe a lower amount. I know about micro dosing, but I don’t have the wherewithal to do it, to keep track. My mind isn’t it used to be.

@enmerzergmailcom It certainly sounds like you have seen the best doctors that there are. Have you found anything that provides you with any relief? Even if it is temporary.