My life is getting to be useless

Posted by kazeiler @kazeiler, Jan 25, 2023

I am a 51 year old who has had everything go wrong with my body. When I was younger it was for severe migraines, then a large golf ball cyst in my right breast. Then PID which was so painful. Then endometriosis twice in 10 years and now again the pain. My abdomen started degrading to where there is almost nothing now. Just fat and skin no muscle. I’ve had atleast 30 surgeries. Including 3 pelvic prolapse surgeries. I then had been suffering for 15 years of Pheochromocytoma and diagnosed myself and was correct even though they said it wasn’t. I’ve always been correct when it comes to my body. A hysterectomy actually 2 times second to remove my cervix . So many surgeries and before each thing went wrong there was pain. I constantly begged for help. My body has been degenerating this whole time. I have issues with my feet and spine, neck and back. I’ve had to move quite a bit and some doctors were great but then we’d have to move. When I had Pheo I was treated like a dog and a drug seeker. The headaches were deadly. My heart rate would t go up in the hospital and I had no clue it was my blood pressure. Just thought hot flashes. Tremors, sweating. Hospital after hospital. Maybe 50 times or more. 15 years of it. I have PTSD from doctors. I miss my old ones but have to be where my husbands job is. I’ve been suffering with chronic pain all of my life. I’m in Michigan now where I’ve been doing everything they said paid for everything they did but still won’t put me back on my medication. I am now at home I do nothing. I can barely walk, sleep, sit. Anything. I can’t go anywhere or do anything I use to when I was being treated. When I was treated I had a job, did everything by myself. No I’m nothing! I’m literally dying in my house day by day. Has this world come to this, where my dog can get medication but I can’t. I have a psychiatrist but even she won’t give me clonazepam. I was on oxycodone and clonazepam. And other things I needed. I need a chance to be human again. Live without extreme pain. Cortisone shots, antidepressants and buprenorphine which doesn’t work at all. Or maybe a tiny bit. I cry everyday. Why? I have a prolapse again no pain treatment. Hernias, no pain treatment. My stomach muscle severe pain. When I was treated o never asked for more. I stayed on my same regimen day to day. Life was good I was still in pain but my doctors were good. I shouldn’t have to suffer this way. I’m writing this and I’ve never done this before but I wish a doctor could see me. A grown adult. I know my body better than anyone. I’ve tried everything in 30 or more years. I know what works. I pray for a humane doctor. I have just given up. Waiting or looking or even thinking there is one who cares about me. I can’t even shower. Takes me 3 weeks. But they don’t care. Please send me someone who will. pleas tell me what to do? Abby

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Rachel, Volunteer Mentor | @rwinney | Jan 26, 2023

In reply to @jlf2 "Ok thankx I’m new here" + (show)

@jlf2 Welcome to Connect, so glad you've joined us.

cookiegirl1944 | @cookiegirl1944 | Jan 26, 2023

Do you live in Minnesota? If so, are you near Burnsville?

kazeiler | @kazeiler | Jan 27, 2023

In reply to @rwinney "Hello @kazeiler, welcome. Thank you for pouring your heart out and explaining your health history. I'm..." + (show)

My support system is my husband and he has no clue how to do it. He always says stuff like you can do it! Or no one else is going to do it for you! He does help though. He does so much for work, at home. I feel like checking g myself into a pain hospital like palliative care. Omg it’s exhausting. Oh and on top of everything I’m losing my mind! I forget or can’t remember much mostly short term. But also have huge chinch’s of my life missing. I use to remember everything. My brain has white matter I’m guessing that’s the culprit for that. But the headaches are horrible not as bad as when I had Pheo for 15 years. But bad. Omg just a huge list I left out of my first story. Thank you for asking and caring. Abby

lindes | @lindes | Jan 27, 2023

Abby, I feel so sorry for you, and I hope you have a chance to see doctors who can help you. I am almost 80 years old, and have a very complicated health condition, in fact so complicated that my data was submitted to the Rare and Undiagnosed Disease Research Biorepository.
I live in south west Florida, but once a year I travel for a couple of weeks north to Minnesota to see my medical providers at the May Clinic in Rochester, MN. I would not be among the living anymore, if the docs of the Mayo would not take care of me. The rest of the time they meet with me in online sessions.
I can only recommend that you seek help a the Mayo. I am sure they can help you to live a mostly painfree life again.

Linde

msdds1 | @msddsq | Jan 28, 2023

I have a storied history as well. I am confused by your first post. What worked in the past?
You need to find someone who will manage your care with what works or worked. The medical doctors have swung too far to the opposite side with pain management but there is some new literature coming out that some of us need things that are controlled substance. They say its addicting but I say, if my body needs insulin, and I have to take it for the rest of my life, isn't that the same? If my body needs a small amount of a chemical regardless of what it is , am I addicted? Or is it lacking a chemical and I need to replace it? I don't abuse it, I don't need more and more. I am not addicted, It gives me a better quality of life and controls so many things that make that quality of life better.
In addition, look at the Pain Management site on this website. There are a lot of good ideas like Interthecal pain management and Spinal Stimulators as well.

Rachel, Volunteer Mentor | @rwinney | Jan 28, 2023

In reply to @kazeiler "My support system is my husband and he has no clue how to do it. He..." + (show)

Good morning, Abby - you're very welcome. It's easy to care when you can relate. I'm glad to hear your husband is there for you, even if he doesn't get it sometimes. It sounds like he tries and cares about you. That's huge.

Understandably, your main gripe is about meds, mainly controlled substance, and no longer receiving them. Is that right? It sounds like you had acute problems, but now they have turned chronic and you're having a hell of a time knowing how to live, find joy and focus on what you can do versus what you can not. Management with meds is only part of the equation. I learned the hard way, like you, as I was so consumed with my body "failing" at a younger age. I had a lot of struggle remembering that I was still a human with interests, hopes and desire to live and find joy. I had no idea how to live with what I had.

When you get deconditioned because of chronic pain you can either stay in a spin out cycle or you can chip away at making small everyday changes and build on taking your life back. That means both mind and body. Granted, that may look different because of health past circumstances, and not be what you planned on, but it does NOT have to define you.

If I sound preachy, its because I've been through the crap of it all and I'm passionate about helping people. You are not alone in having a rough go at life and challenges to face. What can I do to help you make a first step in a new positive direction? For me it took knowing that I had life to live and damn it all, I was not going to let my chronic pain define me. It took strategizing - removing control from the doctors to make me feel better and taking on control for myself.

Here is a video that I hope will give you information on the cycle of pain. It's pretty important to learn about what your mind and body are going through if you want to try and help them.

Mayo Clinic Pain Rehabilitation Center:

Dr. Sletten of Mayo Clinic's Pain Rehab Center in FL, does a fantastic job of breaking down the cycle of chronic pain, and offering strategies for folks and their families to move forward in a hopeful, positive direction. I hope you find value in watching the video.

Oh, and about losing your mind....stress, anxiety, depression, pain, fear, loss, grieving, anger -it all adds up and can overcome any sense of normalcy including memory. Please give yourself grace, and self-talk your way through knowing life can get better. I'm really rooting for you and look forward to hearing back. Do you mind letting me know your thoughts on the video? What might be your next step?

cynthiapotter | @cynthiapotter | Jan 28, 2023

@kazeiler my heart went out to you reading your posts. I'm new to this group, and I have to say everyones reply to you is so comforting.

lgumerman | @lgumerman | Jan 28, 2023

In reply to @lindes "Abby, I feel so sorry for you, and I hope you have a chance to see..." + (show)

What does Mayo allow for pain relief?

lindes | @lindes | Jan 28, 2023

In reply to @lgumerman "What does Mayo allow for pain relief?" + (show)

They use multiple approaches depending on the pain and it's location. I have a spinal nerve simulator implanted to take care of my lower back and leg pain.